Nootropics and Brain Wave Biofeedback for Optimal Brain Health
Ordinarly, there’s more hype than substance in claims about vitamins. As part of a presentation on brain health and Alternative Medicine this past September at Sovereign Health in Orange County, I discussed the many alternative medicine modalities under Alternative Medicine and CAM(Complimentary and Alternative Medicine). In my analysis, I felt there was great promise in alpha-theta brain wave biofeedback and in Nootropics vitamins for the brain. Nootropics have been around for some time. But it’s only been in the last 10 years that neuroscience has been able to corroborate the claims. Many studies today corroborate which portions of the brain are responsible for which behaviors and skills.
I am personally pretty good about taking vitamins and more recently purchased a few of the vitamins in the class termed, “Nootropics,” or vitamins for the brain. Nootropics time has finally come, and I feel their interest is also fueled in part today by energy vitamins such as 5-hour Energy, and ADHD stimulant prescription drugs like Adderall.
One of the Nootropics pioneers is TruBrain who produces a popular brain performance concoction under the same name (www.Trubrain.com) that has garnished good reviews. There’s no hype to this product. It really does boost brain performance. But, it will run you upwards of $80-$125 per month.
Then I came across two blogs (inverted below) that discuss the individual Nootropic components in TruBrain. The 2nd blog even gives a detailed costs breakdown and finds there is about a 50% markup when buying TruBrain over the individual Nootropics when purchased separately.
I examined the breakdown of components in TruBrain and noticed that it did not include ALL available recognized Nootropics. In particular, what are missing are Mucuna, 5-HTP, GABA, and L-Phenylalanine. I’ll get back to this later. The next step is in determining which Nootropics will be most beneficial to you.
How to Determine your Needed Nootropics
To understand your own needed Nootropics, I felt it critical to examine the various neurotransmitters or neurochemicals (as they are interchangeably called) and their role in brain function and brain performance. I’ve inserted a slide below that identifies ten (10) recognized neurotransmitters. I’m not convinced of its entire accuracy as it appears dated. But it provides a good overview. There’s also plenty of information available on web sites and vitamin pages (with detailed reviewer comments) such as Amazon.com. Amazon sells vitamins at some discount compared to my area Mother’s Market store. But, do your own comparison shopping.
I examining the individual neurochemicals of the brain, you should begin by making a list of known medical conditions for which you are currently receiving treatment, or have received treatment for in the past, plus a list of associated symptoms and complaints. Now look these complaints up on the “Neurotransmitters and their Effects” slide below, or one by one look up the various Nootropics on Google, or Nootropic product information/uses on Amazon.com, and write down the Nootropics you find may be connected to any medical conditions or deficiencies you have. Label this Critical Nootropics.
Next, make a list of brain performance characteristics you would like to improve about yourself. This could be performance qualities related to a job, or sports, or your personal life. Label this list Optional Nootropics.
Next, assemble a list of your current medications, and look up their contraindications and clashes with vitamins on this Drugs.com page. Write down any vitamins listed as having a possible conflict or contraindication on your medications.
Below is a link to neurochemicals (neurotransmitters) on wikipedia:
In deciding which Nootropicsto individually buy, look up the Critical Nootropics on your list online say at Amazon.com. Amazon makes it very easy to navigate from Nootropic to Nootropic by clicking on the “Buyers also Bought” or “Similar Products” recommendations under each Nootropic, and write down a few words on each along with costs and dosage information. You can read reviews now, or wait til later. All you want to do at this phase is find your critical Nootropics, and get an idea of the typical strength, cost, and popular manufacturers.
Next, do the same for your Optional Nootropics. Now look over list of contraindicated vitamins and write an “X” over any that appear on either of your Nootropics list. The next challenge for you (as is for many of us) is which one’s can you afford? I think if you took all available Nootropics, you’d be shelling out upwards of $140 per month. The costs analysis blog by John Backus gives a nice breakdown and costs of the Nootropics in TruBrain, and then you can add the others I identify further below.
As a guide, the two most commonly supplemented neurochemicals are seratonin (for daytime mood & brain performance) and dopamine (your natural pain killer/mood tranquilizer). After these, come endorphins and cannabinoids which are produced during exercise, but can also be supplemented. Cannabinoids are reported to be found in different strengths of medical marijuana.
Now the typical reason(s) for taking Nootropics is to aid cognition, pain management, mood and happiness, sleep, and management of stress. It is refreshing to see true facts about vitamins. No need to hype. Nootropics do really work!
Best Nootropics for Brain Health
I have been taking a handful of Nootropics over the last few months along with good multi-vitamins without much noticeable benefit or change in my complaints. This included L-Glutamine, Acetyl L-Carnitine, L-Tyrosine, Turmeric, and COQ10.
The TruBrain blend contains: Piracetam, Choline (Citicoline), Acetyl L-Carnitine, EPA & DHA, Magnesium, Pramiracetam, L-Theanine, and Tyrosine.
I recently began taking Mucuno and 5-HTP – and noticed these helped mental clarity and acted as a mood enhancer/pain management. Next, I will add either of Citicoline or Piracetam (also taken with Pramiracetam) to help with cognition and memory.
Mucuna is reported to aid dopamine production (your brain’s natural pain killer), and 5-HTP is reported to aid the production of seratonin (critical in daytime brain function & mood). Citicoline, Piracetam, and Pramiracetam are reported in medical studies to aid cognition, mental focus, and memory.
If you Google any of these Nootropics today, you will find supporting studies from recognized medical institutions, something that has only come about in the past 1-2 years. Ginko Biloba is now moot today as a memory enhancer. And Omege-3s were reported to no longer prevent brain aging and dimentia. I’m not exactly sure what’s recommended now to ward off the effects from aging. Perhaps EPA and DHA as they are fatty acids.
Now the challenge is in determining which Nootropics you need versus what you can afford. For me, Mucuna and 5-HTP provided an excellent mood, pain relief, and energy boost. But I know that I must take a cell foundation Nootropic such as Acetyl L-Carnitine, and a cognitive enhancer Piracetam or Citicoline, or both. Tyrosine and Theanine are also foundation Nootropics and aid dopamine production, as does L-phenylalanine, which also aids dopamine and tryptophan in seratonin production. But use caution with L-phenylalanine as it is a strong stimulant and mood enhancer. The two protective Nootropics thought to replace Omega-3s in brain health are now EPA & DHA. Two more Nootropics involved in the production of neurochemicals are Taurine and Glutamine. And Turmeric & CoQ10 are particularly helpful if you suffer from problems or disorders with nerve cells or inflammation.
The Nootropics SAM-e and St. John’s Wart are used for depression. However, I would try the above core Nootropics first. Then, speak to a physician about using the anti-depressant vitamins.
Nootropics are available at a variety of online sites, including, Amazon.com and e-Bay. You should also take a good multi-vitamin, and hydrate, and get regular exercise. If you’re like most of us, costs will be an issue. So take some foundation Nootropics, and then those that support your defficiencies or particular needs. And if costs isn’t an issue, I recommend taking all of the above. Next, I discuss “rhythm” activities and “biofeedback” you should undertake to optimize your brain waves, which play a mjor role in behavior, mood, cognition, pain management, and health and wellness.
Alpha-Theta Brain Wave Biofeedback thru Drumming
In my work as a drum circle facilitator, I put on drumming workshops to aid brain function, general health and wellness, team-building, and exercise and fitness. And I speak on drumming and the brain, and how it can be used in a variety of settings.
Guns vs. Drums: Which is better for your mental health?
There’s been another mass shooting in the U.S., and this time at a community college in Oregon. Like so many of the other shooters of these mass shootings, the shooter also suffered from a learning disability and likely related sensory processing disorder (SPD) and mental health issues. But why are these individuals and their families advocating the use of guns and related shooting activities say at gun ranges – as a form of MENTAL HEALTH THERAPY?
But unlike President Obama and so many gun control advocates (and zealots), I see this from a different angle. I see it from the perspective of misguided practices across the U.S. for persons with developmental, learning, and mental health disorders – whose families believe that gun recreation & shooting is the right THERAPY for their brain health challenges.
Now I know a lot about brain health as I have been living with the disorder, hydrocephalus, since a 1992 auto accident, and became a neuroscientist and drum circle facilitator as a result of challenges I and so many others face today. I put on drumming workshops for a wide variety of brain disorders. I see with from a different angle, and I see firsthand how engagement activities can help, or hurt the affected individual.
My heart goes out to the families with children with developmental and mental health disorders as they’ve been looking for activities and outreach for their children for many years. I see the parents’ fear and exhaustion when they bring their adult children to my workshops. But in the case of so many of the mass shootings in the U.S. over the past 20 years, it appears many were carried out by individuals with development or brain health challenges, and it was their parents that got them into gun recreation – thinking it will bring them peace and help them better integrate into society. But, what we’re finding in these shootings, is that they are mis-using the guns to act on “untreated” brain health issues. And in these cases, other activities and therapies need be undertaken.
There is actually a lot of similarities in the sensory and personal qualities of guns vs. drums. In each, it is the vibration and sounds that provides a brain “buzz” of sorts. Both also give the individual an enhanced feeling of importance. But that’s where it ends!
Affected individuals are often drawn to activities like guns, drums, and even auto racing for the sensory “highs” they provide, much like a drug. Parents often feel gun recreation and therapy helps maintain calm, and ward off mental health and SPD meltdowns. But the brains of many of these individuals are often not high functioning enough to know the difference between right vs. wrong – and with a gun, automobile, or other deadly device, it can be a lethal combination. And the vast majority of affected individuals also face challenges in cognition, sensory processing disorder, and cognitive accessibility. In medical terminology, I would call ill-advised recreation with guns “contraindicated.” And as for alternatives, there are many!
I have been involved with drumming, or drum circles, for 11 years now, and I put on a variety of drumming workshops for the brain, and with excellent results.
The sound & vibration of the drums effects one’s brain waves, and its group activity qualities allow for team building, leadership, and creative expression. On a therapeutic level, drumming acts as neurofeedback, sensory, and occupational therapy all in one, and helps to normalize associated cognitive, behavioral, and sensory complaints in these disorders.
My web site and blog links below detail health science information drumming, basketball, and alternative medicine modalities
Again, to me the bigger issue is WHY parents are advocating the use of guns & gun recreation in unstable children with mental health disorders? There are so so many recreational and outreach activities far more ideal for these children, many of whom are now adults.
On a political level, it seems the Obama administration is more concerned with gun control, and the plight of illigal immigrants and refugees from Syria, than the plight of Americans and American families with children with developmental and mental health disorders.
In my view, these shootings are not so much a problem about guns, but a problem about the lack of understanding of mental and developmental health, and how to best care for these individuals as adults. Sixty years ago, many of these shooters might have been institutionalized. We’ve moved away from that, but we’ve failed to modernize our practices. This has been an evolving crisis for many years!
In my addiction blog above, I detail the science of many of these disorders, and share results from many alternative and sensory therapies. In addiction disorders, both mental health and learning disorders often occur together as “dual disorders.” I recently spoke on this new area of brain science at Sovereign Health. I am involved with drumming and drum circles for these disorders, and have seen great results.
Complementary and Alternative Medicine Methods in Addiction Treatment
Stephen M. Dolle
CEO, Dolle Communications
Neuroscientist, Drum Circle Facilitator, and Hydrocephalus Survivor
Presented Sept. 9, 2015
Sovereign Health, San Clemente
Presentation on CAM in Addiction
Overview of Addiction
Medical Sequela in addiction
Prospects in Managing Health Complaints thru mHealth
Cognition and Addiction
Sensory Processing Disorder (SPD)
Neurotransmitters of the Brain
Brainwave States of the Brain
Types of CAM/Alternative Medicine Therapies
Alternative Therapies in Addiction Treatment
Most Promising CAM Therapies per my Research
There are many types of addictions, and many different approaches to the physical and psychological needs of individuals affected by addiction. In this presentation, I examine complementary and alternative medicine and CAM methods in drug & alcohol and other addiction treatment. Sovereign Health is a full service addiction treatment organization serving Orange, Los Angeles, and San Diego Counties.
My affiliation with addiction treatment is mostly through my work as a drum circle facilitator, where group drumming, or drum circles, is used as an efficacious method of treatment, and with very good success. My other connection is in living with the condition, hydrocephalus, where I share similar cognitive, sensory processing, and chronic fatigue complaints to addiction.
One of the notable neurological sequela is sensory processing disorder, or SPD. It is often secondary to many neurological and learning disorders. I discuss how alternative modalities might bring relief to SPD complaints in addiction, where I have had very favorable outcomes with drumming and drumming therapy. I am hoping a new detailed look at these modalities might reveal some new prospects.
Cognitive dysfunction in addiction (and neurological disorders) raises additional challenges with cognitive accessibility and intolerance to sounds, lights, scents, and motion, and difficulty understanding instructions, web pages, and product labels. A myriad of protections are possible in mitigating adverse exposure, and in rendering instructions, web sites, and facilities more understandable, and thus accessible.
Complementary and Alternative Medicine, or CAM, is the term designated by the National Institutes of Health (NIH). It generally refers to the array of modalities used in adjunct to traditional or Western medicine. Other terms such as alternative medicine, mind-body medicine, and healing medicine, are then used more broadly. I have followed and adopted a number of alternative medicine methods since my early years in mindfulness study (1973). I was influenced by early books from Dr. Wayne Dyer and Norman Vincent Peele, articles about nutrition, philosophy, and spiritual healing.
My Conclusions found the following offer the greatest potential as adjunct treatment:
2. Alpha Theta Brain Wave Therapies
3. Spirituality, Faith & Belief
4. Psychotherapy guided sensory & movement therapies
5. Therapies (drumming, basketball) coupled with EEG biofeedback*
6. Neurotransmitter (nootropic) supplements
I did not review and discuss supplements and homeopathy. But will be adding these as separate blogs in the coming months.
Current studies report very favorably on meditation and alpha-theta brainwave biofeedback methods – as it allows participants to lower brainwave states into the alpha phase (8-15 Hz), where improved recall of memories necessary for processing trauma & healing is possible.
Favorable results are reported in movement, sensory, and touch (massage) therapies, particularly when a practitioner interacts with dialog and affirmations. This helps to overcome trauma and negative emotions about an illness. It includes EMDR therapy.
The increased availability of EEG reader technology coupled with mobile phones and tablets can be added to therapies and allow enhanced biofeedback in alpha brainwave states. I am excited to try adding EEG wave assessment to basketball and drumming. I currently only track eye and body movements as an estimate of brainwave states.
Nootropic supplements of neurotransmitters is intriguing today with what we know about brain science and the 8-10 neurochemicals at play in behavior, cognition, mood, and energy levels. What is often difficult to ascertain, is determining which neurotransmitters an individual might be deficient in. Nootropics offer consumers the ability to supplement these for improved brain health and performance. An mHealth app might further this assessment to more strategically target low levels.
I’ve practiced spirituality, faith, and belief methodologies since the 1970s with good outcomes, while also witnessing some in my earlier nuclear medicine work. Faith/belief, like so many alternative modalities, can be difficult to corroborate due to user bias to a particular doctrine, practitioner, or technique. Still, my experience and studies report favorable some very outcomes with faith healing. The specific faith or belief is one of personal preference. Between 1981-1992, I interviewed several thousand patients on illness and belief, and channel that into my mindfulness methods in drumming today.
Photo at Top: The image, while it appears to be from a 1960s record album, is actually created from one of my MRI brain images. I created it as a tribute to EMI Records (record label for The Beatles & Frank Sinatra), who funded the development of the first CT brain scanner in 1971, that garnered the Nobel Prize. It was a testament to innovation!
On November 13, 2015, I published this blog on Nootropics Supplements:
Array of neurological complaints, incl. balance & sensory
Dual diagnosis mental health disorders
Co-occurring general health lung, liver, GI, and other disorders
Dual Diagnosis vs Co-occurring Disorder Influences
More than 1/3 of people with mental illness also have substance abuse problems. More than 1/2 of drug abusers also report experiencing mental illness.
Individuals living with a substance abuse disorder, often have one or more physical health problems such as lung disease, hepatitis, HIV/AIDS, cardiovascular disease, and cancer, plus mental health disorders. Great site
Underlying brain pathology is so common and often difficult to detect, and can include undiagnosed prior brain injury, concussion, genetic & environmental disorders. These can occur both as dual and co-occurring disorders, and contribute to cognitive and sensory dysfunction, and can markedly diminish outcomes and likelihood of relapse. Identification of these is often limited by sensitivity & specificity of the diagnostic procedure, competence of medical staff, and practices in the field, i.e. politics of sensory processing disorder (SPD). Dolle recommends your treatment approach should account for underlying hidden pathology. Stephen M. Dolle, online writings; Addiction and Cognition, Thomas J. Gould Ph.D., Dec 2010
Management of Complaints and Co-occurring Disorders thru mHealth
I designed an earlier mHealth app for hydrocephalus, and write about mHealth apps today for the care of neurological disorders. Some of these Apple & Android apps include PTSD, migraine, sleep, pain management, diaries, diabetes & asthma, etc. Some are discussed on the blogs and web pages below.
Drug addiction manifests clinically as compulsive drug seeking, use, and cravings that can persist and recur after extended periods of abstinence. From a neurological perspective, addiction is a disorder of “altered cognition.”
The brain regions and processes that underlie addiction overlap with those involved in essential cognitive functions: learning, memory, attention, reasoning, and impulse control. Drugs alter normal brain structure and function, and produce cognitive shifts that promote continued drug use thru maladaptive learning.
First Stage: drug use increases and becomes uncontrolled, resulting in drug-induced deregulation of the brain’s reward system (Feltenstein and See, 2008). Normally, dopamine is associated with pleasurable feelings, activities, and sex. Drugs hyperactivate this system and trigger abrupt increases in dopamine and sensations, cueing the user to take more, and promoting a new maladaptive drug association (Feltenstein and See, 2008).
Second Stage: the addictive process poses new clinical symptoms, withdrawal, vulnerability to relapse, with alterations in decision making and cognition. Kalivas and Volkow (2005) reported that drug-induced alterations in signals by the neurotransmitter glutamate from the brain area associated with judgment, the prefrontal cortex, which disrupts cognitive and other processes needed for abstinence.
Drug use causes changes in the brain and cognition, affecting the striatum, prefrontal cortex, amygdala, and hippocampus (Jones and Bonci, 2005; Kalivas and Volkow, 2005; Kelley, 2004; Le Moal and Koob, 2007). These regions underlie declarative memory, which are key in maintaining a concept of self (Cahill and McGaugh, 1998; Eichenbaum, 2000; Kelley, 2004; Setlow, 1997). Research suggests drug use impact on cognition is far-reaching.
These drugs increase cognition in the first stage: amphetamine, nicotine, and cocaine. (Del et al., 2007; Kenney and Gould, 2008; Mattay, 1996).
The increase can also be a reversal of withdrawal. (Swan and Lessov-Schlaggar, 2007). Cocaine produced similar effects in a study of rats (Devonshire, Mayhew, and Overton, 2007).
Studies show many drugs reshape the communication pathways between neurons (synaptic plasticity), which can contribute to the formation and persistence of maladaptive drug-stimulus associations.
Cocaine and nicotine induce one form of synaptic plasticity, strengthening neural connections via long-term potentiation (LTP; see Learning in the Mind and Brain on page 8 and Table 1) (Argilli et al., 2008; Kenney and Gould, 2008). Amphetamine can enhance LTP (Delanoy, Tucci, and Gold, 1983).
Marijuana activates the endocannabinoid system, resulting in inhibition LTP and long-term depression (LTD), a form of synaptic plasticity in which connections between neurons become less responsive (Carlson, Wang, and Alger, 2002; Nugent and Kauer, 2008; Sullivan, 2000). Ethanol consistently disrupts LTP while enhancing LTD (Yin et al., 2007).
Morphine inhibits LTP of neurons that exhibit inhibitory control of neural activity via the neurotransmitter gamma-aminobutyric acid (GABA) (Nugent and Kauer, 2008). Inhibition of GABA activity can lead to an increase in neural activity throughout the brain, stronger associations, and maladaptive drug-context associations.
Drugs produce cognition-related withdrawal and makes abstinence more difficult
cocaine—deficits in cognitive flexibility (Kelley et al., 2005);
amphetamine—deficits in attention and impulse control (Dalley et al., 2005);
opioids—deficits in cognitive flexibility (Lyvers and Yakimoff, 2003);
alcohol—deficits in working memory and attention (Moriyama et al., 2006);
cannabis—deficits in cognitive flexibility and attention (Pope, Gruber, and Yurgelun-Todd, 2001); and
nicotine—deficits in working memory and declarative learning (Kenney and Gould, 2008).
These cognitive deficits with withdrawal are often temporary, but long-term use can lead to lasting cognitive decline, depending on the drug, the environment, and the user’s genetic makeup (see Genes, Drugs, and Cognition on page 11).
Long-term cannabis use causes impaired learning, retention, and retrieval of dictated words, with both long-term and short-term users showing deficits in time estimation (Solowij et al., 2002).
Chronic amphetamine and heroin users show deficits in verbal fluency, pattern recognition, planning, and the ability to shift attention from one frame of reference to another (Ornstein et al., 2000).
Prenatal alcohol exposure is the leading cause of mental retardation in the United States (Centers for Disease Control and Prevention, 2009). Fetal alcohol exposure increases susceptibility to later substance abuse (Yates et al., 1998).
Prenatal drug exposure can have significant effects on cognition and behavior in a developing child.
Nicotine use is strongly associated with ADHD, where cognitive symptoms are similar to those during nicotine withdrawal, and both have alterations in the acetylcholinergic system (Beane and Marrocco, 2004; Kenney and Gould, 2008). Acute nicotine use can also reverse some ADHD attentional deficits (Conners et al., 1996).
Genetic makeup also influences the way a drug alters cognitive processes.
FDA has approved three newer medications for treatment of substance abuse:
a) buprenorphine to treat opioid addictions in 2002
b) acamprosate to treat alcohol addiction in 2004
c) extended-release naltrexone to treat alcohol addictions in 2006 and opioid addiction in 2010.
Sensory Processing Disorder
First defined by occupational therapist Anna Jean Ayres in 1972 as the neurological process that organizes sensation from one’s body and environment, sensory processing disorder makes it difficult to use the body effectively within the environment.
WebMD: Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses. It used to be called sensory integration dysfunction.
Article explores the convergence between two fields: clinical field of sensory integration, and a branch of neuroscience that uses the term to describe specific types of sensation disorders.
Newer technology has allowed a new focus on multisensory integration (MSI), which studies the interaction of two or more sensory modalities.
SPD today includes a variety of subtypes depending on the senses involved and functional impairment.
The clinical field is not unified on the subtypes, one group proposes six subtypes (Miller, 2006; Miller et al., 2007), but individuals may also have a combination of subtypes (R. Picard and E. Hedman). Miller proposes three main categories:
A. Sensory Modulation Disorder (SMD): difficulty regulating responses to sensory stimulation. Three subtypes are proposed:
1) Sensory over-responsive (responds too much, for too long, or to stimuli of weak intensity)
2) Sensory under-responsive (responds too little, or needs strong stimulation to be aware of stimulus)
3) Sensory seeking/craving (responds with craving for more or stronger stimulation). All three modulation subtypes have in common difficulty grading or regulating responses to sensory stimuli.
B. Sensory Discrimination Disorder (SDD): Sensory discrimination disorder refers to difficulty interpreting the specific characteristics of sensory stimuli (e.g., intensity, duration, spatial, and temporal elements of sensations; Miller, 2006; Miller et al., 2007a).
Sensory discrimination disorder can be present in any of the seven sensory systems (i.e., vestibular, proprioceptive, and the five basic senses).
C. Sensory-based Motor Disorder (SMD): Within sensory-based motor disorder, two subtypes are proposed:
1) Postural disorder, which reflects problems in balance and core stability, and
2) Dyspraxia, which encompasses difficulties in motor planning and sequencing movements.
I became very involved in sensory processing disorder in the years following my treatment of hydrocephalus. My initial complaints were vestibular, and sensitivity to sound and light, especially real chaotic sources. As you will read from my efforts below, I had already been doing research with medical devices and cognition when I became involved in music therapy. I also recall in the first few years following my initial surgeries, doing tai chi, yoga, swimming, chiropractic, and trying a variety of supplements. But, I was very involved in alternative medicine and healing back in the 1980s. And in 1981 while working as a nuclear medicine technologist, I serendipitously developed skills as a medical intuitive. SEE more about my past efforts in alternative medicine in this 2012 blog.
In 2002, I undertook my first study of sensory integration, and two years later, I became involved in drumming, or drum circles. You will read in the following paragraphs of my extensive efforts in sensory processing, and my efforts today in its future of “cognitive accessibility.”
I view sensory processing disorder as a group of neurological (sensory) complaints, or sequela, associated with dysfunction of the brain & body sensory centers as described by Miller et.al. The specific sensory center involved then determines the type of functional limitation the patient will suffer. But, sensory processing also involves balance & movement, verbal & non-verbal communications, social integration, and independence.
In my experience, the three most common SPD sub-types are: sensitivity to sound, light, and motion. And, it is environmental “triggers” of these affected senses that can put you in an SPD crisis. Learn to be aware what your specific triggers are, and the levels needed to affect you. You can keep written notes, or there are PTSD and pain management mobile apps today that can serve as a journal.
Common complaints typically triggered by susceptibility to SPD include:
•irritability/ behavioral challenges
•nausea & vomiting
•loss of balance, disorientation
•inability of function
Disorders commonly associated with SPDs include: post-concussion, post TBI, hydrocephalus, migraine, autism, PTSD, ADHD, post tumor, dementia, and varying degrees of drug & alcohol addiction.
I have had limited exposure to SPDs in drug & alcohol addiction. But I know they are somewhat common thru addiction’s long term connection with PTSD. But there’s not much published about it. In fact, there are few studies on SPD outside of PTSD and autism.
I estimate SPD today affects about 1 in 5 Americans, when you include seniors with varying degrees of dementia. The challenge is in raising the level of research and awareness that can lead to new treatments. Over the years, I developed my own methods in warding off the effects of SPD as best I could. And in hydrocephalus like in many of the disorders, SPD seems to be more problematic when migraine and other neuro complaints are at their minimum.
6. Play or listen to music, learn compensatory methods to your triggers
Learn how to engage/focus your attention on other things during exposure to triggers
My 2002 SPD study led to my becoming involved with music therapy, and later, drumming. After many years of research and efforts in SPD, I created a separate page on the Cognitive Neurosciences with the identified sub-pages.
The above link is to my 2002 study of SPD I undertook with the metronome on this Boss Recording unit. I confirmed that it is the lack of rhythmic pattern that renders sound much more problematic. I also affirmed that melodic patterns of the same sound were more pleasing, as was also reported in the Mozart Effect. SEE also my blog and web page on sensory processing in football where stadium levels can become problematic.
Myself and others have worked to explain sensory processing disorder or SPD. The next step is in protecting cognition in one’s environment, and the “triggers” that make one ill.
It is my contention that specific disability accommodations are protections from triggers and should apply to individuals with SPDs by virtue of a disability, and moderation of known triggers like adverse sounds, lights, scents, etc in public place, affects the individuals use of facilities. Therefore, accommodations via management of adverse triggers should come under the American’s with Disabilities Act (ADA) and Section 508 of the Rehab Act. Loud TV commercials and sound exposure in one’s home should also be regulated, just as is wheelchair and visual accessibility. Cognitive accommodations should apply to web sites, buildings, and user instructions for a wide range of products. Examples of noise exposure protections are identified below.
Reasonable SPD Accommodations
1. Protection from sudden load audio of TV commercials & programs
2. Construction noise at home, work, and school.
3. Loud music & machinery noise in public places, buildings, health clubs, restaurants, etc.
From 1950-1980, while there were no efforts to make information and technology more user friendly for cognitive accessibility, there were established information practices as a “courtesy” so the user wouldn’t get stressed wondering what was happening to their TV set. This was a common image broadcasters displayed on your TV screen in the event of a problem. Today – you get nothing of the sort. It’s more your problem. Figure it out.
Of course, screen ads like the Yelp screen image below is a common accessibility issue today. Such ads diminish accessibility of a web page, and I hope they cease.
Or if you have a cognitive disability and are out shopping for toothpaste, and come across a busy aisle like that below, with similar packaging – prepare to be in that aisle for a while. Hopefully in the future, stores will better organize these displays.
This cognitive accessibility organization is affiliated with the U.S. government and offers the most up to date information in web design and issues with the internet
There is a tremendous amount of disinformation in SPD, which seems more about politics and insurance reimbursement, than science. I suspect it originates from earlier claims of PTSD from combat, and in children with autism. The way to offset this is with public awareness, activism, and research.
Problematic PR in Addiction, Mental Health, and Neurological Disorders
-the need to turn the image around (esp for cog access), turn a negative into a positive
-compare what Viagra & Sen. Bob Dole did for the embarrassment of ED (erectile dysfunction)
Portugal dramatically improved its ability to encourage drug addicts to avail themselves of treatment. The resources previously devoted to prosecuting and imprisoning drug addicts are now available for treatment programs. Portugal now has the lowest rates of marijuana usage (10%) in people over 15 in the EU. Drug use of all kinds declined.
Neurotransmitters of the Brain
The article below discusses 7 key neurotransmitters or molecules of the brain and their role in cognition, happiness, sleep, etc. The author writes on sports psychology. I’ve pasted in a few key paragraphs from the article.
1. Endocannabinoids: these molecules work on the CB-1 and CB-2 receptors of the cannabinoid system. Anandamide (from Sanskrit “Ananda” meaning Bliss) is the most well-known endocannabinoid. There are at least 85 cannabinoids that have been isolated from the Cannabis plant. It is felt that each of these alters perception and states of consciousness in various ways. It is likely we self-produce many variations of endocannabinoids.
Endocannabinoids act to control neurotransmitter release in a host of neuronal tissues, including the hippocampus, amygdala, basal ganglia, and cerebellum.
A recent study at the University of Arizona published in April 2012 suggested that endocannabinoids are most likely the source of “runner’s high.” The study showed that humans and dogs significantly increase endocannabinoids following sustained running. It not address the potential role of endorphins in runner’s high. Other research has focused on the blood–brain barrier (BBB), which reported that endorphin molecules are too large to pass freely across the BBB, and are probably not responsible for the blissful state in runner’s high.
This latest study offers a more definitive connection with this neurochemical. You have the option to read or download the full study.
2. Dopamine: it is a reward-driven neurotransmitter for pleasure. Every type of reward that has been studied increases the level of dopamine transmission in the brain.
Dopamine plays a key role in the limbic system, which is involved in emotional function and control. It also plays a part in movement, alertness, and sensations of pleasure.
Many addictive drugs, such as cocaine and methamphetamine, act directly on the dopamine system. Cocaine blocks the reuptake of dopamine, leaving these neurotransmitters in the synaptic gap longer. There is evidence people with extraverted, or uninhibited personalities, tend to have higher levels of dopamine than those with introverted personalities. Try and increase your levels of dopamine naturally by being a go-getter idea person.
3. Oxytocin: “Bonding Molecule” (hormone) is directly linked to human bonding, social trust, and loyalty. High levels of oxytocin correlate with romantic attachment in men. When a couple is separated, the lack of physical contact lowers oxytocin and drives the feeling of longing to be with that person again. Oxytocin levels are typically higher in women. In men, vasopressin (a close cousin to oxytocin) may be more the “bonding molecule.” It is said that those who engage in philanthropy and volunteerism have higher levels of oxytocin.
The strong emotional bonding between humans and dogs may have a biological basis in oxytocin too. And is likely why seniors and widowers live longer happier lives when they keep a dog. If you don’t have a partner to offer you affection and increase oxytocin, pets, dogs and cats fill a key void.
Oxytocin is involved in the control of maternal behavior. A large amount of oxytocin is made in the hypothalamus, transported to the posterior lobe of the pituitary and released into the blood.
4. Endorphin: Resemble opiates in chemical structure, and have analgesic properties too. Serum β-Endorphin is an endogenous opioid neuropeptide found in the neurons of both the central and peripheral nervous system. It is one of five endorphins found in humans, the others of which include α-endorphin, γ-endorphin, α-neoendorphin, and β-neoendorphin.
β-Endorphin release in response to exercise has been known and studied since at least the 1980s. Studies have demonstrated that serum concentrations of endogenous opioids, in particular β-endorphin and β-lipotrophin, increase in response to both acute exercise and training. The notion of β-endorphin release during exercise is colloquially known in popular culture as a runner’s high.
Research has shown that acupuncture needles at specific body points can trigger the production of endorphins. In another study, higher levels of endorphins were found in cerebrospinal fluid after acupuncture.
5. GABA: “Anti-Anxiety Molecule” is an inhibitory molecule that slows the firing of neurons and creates a sense of calmness. You increase GABA naturally by practicing yoga, meditation, relaxing activities. Benzodiazepines, such as Valium and Xanax, are sedatives that increase GABA. But these drugs have side effects and pose risks of dependency.
A study in the “Journal of Alternative & Complementary Medicine” found a 27% increase in GABA levels among yoga practitioners after a 60-minute yoga session, compared to participants who just read a book for 60 minutes. Meditation also lowers beta brain waves to theta waves, reported to aid calm and clear recall of memories.
6. Serotonin: Plays many different roles in the brain. High serotonin aids self-esteem, feelings of worthiness and a sense of belonging (salience). For this reason, serotonin is mimicked in drug and alcohol addiction, and also in prescription drugs for depression, where they are termed Serotonin-Specific Reuptake Inhibitors (SSRIs). Drugs include Prozac, Celexa, Lexapro, and Zoloft. The main indication for SSRIs is clinical depression, but SSRIs are frequently prescribed for anxiety, panic disorders, obsessive compulsive disorder (OCD), eating disorders, chronic pain, and post-traumatic stress disorder (PTSD). Serotonin also helps regulate sleep.
SSRIs got there name because it was once thought they worked by keeping serotonin in the synaptic gap for longer and make people happier. However, some people never respond to SSRIs. But they do respond to medications that act on GABA, and dopamine or norepinephrine.
7. Adrenaline: real name is epinephrine, and plays a key role in the fight or flight mechanism. The release of epinephrine creates a big surge in energy. It increases heart rate, blood pressure, causes less important blood vessels to constrict ,and increasing blood flow to larger muscles. An “Epi-Pen” is a shot of epinephrine used in the treatment of acute allergic reaction.
An adrenaline rush comes at times of distress or facing fear. It can be triggered on demand with activities that terrify you, or a situation that feels dangerous like a movie. You can also aid an adrenaline rush by taking short rapid breathes and contracting muscles, as weightlifters and athletes often do. The jolt is healthy in small doses.
The chart below list the key neurotransmitters and their role in the human body. I’ve also shared some information from Wikipedia further below.
Glutamate is the most common neurotransmitter. Most neurons secrete glutamate. Glutamate is excitatory, meaning that the release of glutamate by one cell usually causes adjacent cells to fire an action potential. (Note: Glutamate is chemically identical to the MSG commonly used to flavor food.)
Acetylcholine assists motor function and is involved in memory.
Nitric oxide also functions as a neurotransmitter, despite being a gas. It is not grouped with the other neurotransmitters because it is not released in the same way.
Eicosanoids act as neuromodulators via the Arachidonic acid cascade.
The table below discusses the effect of drugs & alcohol on brain neurochemicals:
Brainwave States of the Brain
The human brain elicits brain wave signals across neurons which, along with neurochemicals and oxygen blood flow, helps carry out the various functions of the brain. Historically, these brain waves were studied by EEG medical instruments in patients suffering seizures. But today, it has been shown that certain brain waves are most optimal for specific types of activities. Ordinarily this was not something that we could control. But with more recent brain wave research in areas like yoga, music and drumming therapy, EEG biofeedback, and mindfulness, practice has shown that you can execute more control over your brain waves to be happier, healthier, and more productive. Still, brain wave science serves important roles in health and addiction disorders, where along with abnormalities in neurochemicals and behavior, abnormalities occur in brain waves which can be treated with a variety of biofeedback, meditation, music, and other therapies, which I cover in later sections.
Below, is information on the four (4) primary brain wave states recognized today. The chart (further below) identifies additional brain waves on the upper and lower ends of the range. The chart identifies brain waves associated with the primary neurotransmitters.
Beta Waves: frequency range between 12 and 30 Hz. They awaking awareness, extroversion, concentration, logical thinking, active conversation.
Alpha Waves: frequency range of 8-12 Hz arising from synchronous and coherent (in phase / constructive) electrical activity of thalamic pacemaker cells in humans. They are also called Berger’s wave in memory of the founder of EEG. They place the brain in states of relaxation times, non-arousal, meditation, hypnosis
Theta Waves: 4-8 Hz. Day dreaming, dreaming, creativity, meditation, paranormal phenomena, out of body experiences, ESP, shamanic journeys. A person driving on a freeway, who discovers that they can’t recall the last five miles, is often in a theta state – induced by the process of freeway driving. This can also occur in the shower or tub or even while shaving or brushing your hair. It is a state where tasks become so automatic that you can mentally disengage. The ideation that can take place during the theta state is often free flow and occurs without censorship or guilt. It is typically a very positive mental state.
Delta Waves: high amplitude brain waves between 0-4 hertz. Delta waves associated with deepest stages of sleep (3 and 4 NREM), known as slow-wave sleep (SWS), and aid in characterizing the depth of sleep.
Meditation increases activity in the left prefrontal cortex. The changes are stable over time. If you stop meditating for a while, the effect lingers.
In my work as a drum circle facilitator, I have been actively involved in altering brain waves since 2010. In group drumming, there is a group “brain wave entrainment” or BWE, where the brain waves of members of the group can act alike, in as little as 8-10 minutes of drumming. BWE in drumming was first identified by Dr. Barry Bitman et. al.
My 2015 blog (and web page) on Drumming in the Workplace describes how drumming can alter brain waves and lead to increased productivity, less stress, and healthier employees at work. The article below discusses how brain waves affect mental health.
Neuroscientists have made a correlation between an increase of alpha brain waves—either through electrical stimulation, mindfulness, or meditation—and ability to reduce depression & increase creative thinking. The issue is too much Beta wave activity esp related to stress. SEE brainwave feedback info on altering these waves.
(Wikipedia) Binaural tones are auditory processing artifacts, or apparent sounds, caused by specific physical stimuli. This effect was discovered in 1839 by Heinrich Wilhelm Dove and earned greater public awareness in the late 20th century based on claims coming from the alternative medicine community that binaural beats could help induce relaxation, meditation, creativity and other desirable mental states. The effect on the brainwaves depends on the difference in frequencies of each tone: for example, if 300 Hz was played in one ear and 310 in the other, then the binaural beat would have a frequency of 10 Hz.
The brain produces a phenomenon resulting in low-frequency pulsations in the amplitude and sound localization of a perceived sound when two tones at slightly different frequencies are presented separately, one to each of a subject’s ears, using stereo headphones. A beating tone will be perceived, as if the two tones mixed naturally, out of the brain. The frequencies of the tones must be below 1,000 hertz for the beating to be noticeable. The difference between the two frequencies must be small (less than or equal to 30 Hz) for the effect to occur; otherwise, the two tones will be heard separately, and no beat will be perceived.
Binaural beats are of interest to neurophysiologists investigating the sense of hearing.
Binaural beats reportedly influence the brain in more subtle ways through the entrainment of brainwaves and provide other health benefits such as pain relief.
Types of CAM/Alternative Medicine Therapies
The National Center for Complementary and Integrative Health (CAM), a Division of NIH, provides the following:
Complementary and Integrative Health or CAM is the term created by NIH to identify alternative medicine therapies used together, or in adjunct to, traditional Western medicine.
The above list the most recognizable modalities. For modalities outside of NIH and Western medicine, more can be found under alternative or mind-body medicine. You can sign up for emails at: NCCIH@public.govdelivery.com
Western medicine has been critical of alternative modalities, offering very limited support to reports of effectiveness. But a few, they do endorse, namely meditation, biofeedback, acupuncture, music therapy, and some movement and proprioceptive therapies, i.e. equine or horse therapy. As much as I like Wikipedia, they exhibit a bias against alternative medicine, though perhaps some modalities deservingly so.
The major rhythmic disruption in PTSD and complex trauma is circadian rhythm; the 24 hr. sleep/wake cycle that follows the dark/light cycle of the sun’s rising and setting.
Types of Alternative Therapies in Addiction Treatment
The list of alternative medicine therapies below is a comprehensive list from AddictionRecoveryGuide.org – a very intriguing site. I cannot speak to the effectiveness of many of these in addiction treatment. Still, they are therapies that are in use in the treatment of addiction, and must have some effectiveness.
Auricular therapy – Auricular therapy is a healing practice dating back to the third century where the practitioner uses needles at acupuncture points on the outer ear that correspond to specific parts of the human body.
Breath Therapy – breathing techniques to help reduce stress, get more energy, feel better, and lose weight.
Creative Arts Therapy
Massage & Bodywork
Spirituality/Faith & Belief
Psychodynamic & Educational groups
Equine Assisted Psychotherapy – (EAP) incorporates horses for mental, behavioral health, and personal therapy. It is a collaborative effort between a licensed therapist and a horse professional to address treatment goals.
Step curriculum is designed to build competencies in four key areas recognized as vital to professional success.
Leadership & Management: Identify, communicate, and influence future outcomes, risks, and impacts. Recognize opportunities for yourself and for others. Implement successful organizational processes in areas such as planning, budgeting, and performance management.
Communication & Relationship Building: Assess situations, identify meaningful solutions, and communicate these solutions to others. Create collaborative environments and offer constructive feedback to help a team achieve its goals.
Personal & Professional Management: Apply self-management techniques to achieve career and personal goals using the process of life-long learning, self-development and managing behavior.
Entrepreneurialism: Identify professional surroundings as a potential marketplace. Acquire the tools to take advantage of one-of-a-kind opportunities within that marketplace, whether as an employee or an individual starting a business.
RESULTS: Available evidence suggests that music-based interventions may have a positive impact on pain, anxiety, mood disturbance, and quality of life in cancer patients. Advances in neurobiology may provide insight into the potential mechanisms by which music impacts these outcomes.
The somatosensory systems inform us about objects in our external environment through touch (i.e., physical contact with skin) and about the position and movement of our body parts (proprioception) through the stimulation of muscle and joints. The somatosensory systems also monitor the temperature of the body, external objects and environment, and provide information about painful, itchy and tickling stimuli.
Acupuncture – Auricular, or ear, s based on points in the ear are associated with specific parts of the body. Thus acupuncture needles placed in the ear can achieve a therapeutic effect anywhere in the body. Acupuncture is often used to reduce symptoms related to withdrawal and detoxification and may also have a role in relapse prevention by reducing anxiety, craving, irritability, the inability to focus, and muscle aches.
RESULTS: One patient did not complete treatment due to a major operation, the remaining 9 (90%) completed treatment. All patients (100%) completely stopped use of any street drugs and results remained stable for 6 months after end of treatment. Two years after end of intervention, 7 out of the 9 (78%) remained clean of use of heroin, but 2 (22%) returned to partial use; 6 (67%) of the patients returned to partial use of benzodiazepines, none (0%) showed permanent use of marijuana or cocaine.
Neurofeedback mimics Zen monks (meditation increased alpha, reduced to theta).
Dr. Thomas Budzynski found theta states made subjects ‘hyper-suggestable’ (as if in a hypnotic trance) to suggestions for positive changes to behaviour and attitudes.
Brain Wave Biofeedback* (neurofeedback) – Patients learn to alter their brain wave patterns. Training involves restoring a normal pattern of alpha and theta waves disturbed by long term substance abuse. Brainwave biofeedback has shown dramatic success in several studies to prevent relapses from drug and alcohol addiction.
Alpha-theta Biofeedback: “Peniston Protocol” – great results, uses EEG
The bulk of literature to date regarding EEG biofeedback of addictive disorders is focused on alpha-theta biofeedback. The technique involves the simultaneous measurement of occipital alpha (8–13 Hz) and theta (4–8 Hz) and feedback by separate auditory tones for each frequency representing amplitudes greater than pre set thresholds. The subject is encouraged to relax and to increase the amount of time the signal is heard, that is to say, to increase the amount of time that the amplitude of each defined bandwidth exceeds the threshold. A variety of equipment and software has been used to acquire, process, and filter these signals, and there are differences in technique inherent with equipment and software.
The protocol described by Peniston at the Fort Lyons VA is similar to Twemlow and Elmer Green at the Menninger Clinic, with two additions, i.e., (1) temperature training and (2) script. Peniston introduced temperature biofeedback training as a preconditioning relaxation exercise, along with an induction script to be read at the start of each session. This protocol (described as follows) has become known as the “Peniston Protocol” and has become the focus of research in subsequent studies. Subjects are first taught deep relaxation by skin temperature biofeedback for a minimum of five sessions that additionally incorporates autogenic phrases. Peniston also used the criteria of obtaining a temperature of 94° before moving on to EEG biofeedback. Participants then are instructed in EEG biofeedback and in an eyes closed and relaxed condition, receive auditory signals from an EEG apparatus using an international site O1 single electrode. A standard induction script employing suggestions to relax and “sink down” into reverie is read. When alpha (8–12 Hz) brainwaves exceed a preset threshold, a pleasant tone is heard, and by learning to voluntarily produce this tone, the subject becomes progressively relaxed. When theta brainwaves (4–8 Hz) are produced at a sufficiently high amplitude, a second tone is heard, and the subject becomes more relaxed and according to Peniston, enters a hypnagogic state of free reverie and high suggestibility.
Applied kinesiology use the principle of muscle strength to evaluate subconscious thoughts, body energy, and meridians for signs of manifesting physical and mental health disorders. Seems to also access meridian & hypnosis mechanisms.
*critical of AK per American Academy of Allergy, Asthma and Immunology
Definition: A manual muscle test in AK is conducted by having the patient resist using the target muscle or muscle group while the practitioner applies a force. A smooth response is sometimes referred to as a “strong muscle” and a response that was not appropriate is sometimes called a “weak response”. This is not a raw test of strength, but rather a subjective evaluation of tension in the muscle and smoothness of response, taken to be indicative of a difference in spindle cell response during contraction. These differences in muscle response are claimed to be indicative of various stresses and imbalances in the body.
The mind can only really think of one thing at a time. When you concentrate your attention on one thing, you inevitably engage the parallel act of ignoring other things.
The February 2015 study “Attention Drives Synchronization of Alpha and Beta Rhythms between Right Inferior Frontal and Primary Sensory Neocortex,” was published in the Journal of Neuroscience.
The researchers at Brown identified how the brain achieves optimal inattention by changing the synchronization of brainwaves between different brain regions. The researchers hope that by harnessing the power to ignore, that people with chronic pain will have new cognitive tools for reducing pain.
People can learn how to manipulate their alpha rhythms in the somatosensory cortex as they switch their attentional focus though mindfulness training. The results of their latest research expand our understanding of how mindfulness might possibly operate using the mechanism of redirecting attention via control of alpha rhythms in the brain, which can help people ignore depressive thoughts.
Two opposite ways to forget bad memories. During memory suppression, a brain structure called dorsolateral prefrontal cortex inhibited activity in the hippocampus, a region critical for recalling past events. Understanding these mechanisms may help understand disorders of memories, such as post-traumatic stress disorder.
If suppression doesn’t work, you might want to put on your “rose-tinted glasses” and try substitution by using your imagination to pretend you’re in a different place or experiencing something else.
The researchers at Cambridge found that memory substitution was supported by caudal prefrontal cortex and midventrolateral prefrontal cortex. These are two regions typically involved in bringing specific memories into awareness in the presence of distracting memories.
Meditation significantly improved functional connectivity in the brain’s network active during introspective thought such as retrieving memories. They also observed trends of less atrophy in the hippocampus.
Fadel Zeiden is exploring the specific brain mechanisms that influence meditation’s ability to reduce perceptions of pain and the experience of anxiety.
Best CAM for Pain Management
Yoga, Acupuncture, EEG biofeedback, Massage Therapy, Tai Chi, Deep Tissue Massage
A new analysis of data from the 2012 National Health Interview Survey (NHIS) has found that most American adults have experienced some level of pain, from brief to more lasting (chronic) pain, and from relatively minor to more severe pain. The analysis helps to unravel the complexities of a Nation in pain. It found that an estimated 25.3 million adults (11.2 percent) experience chronic pain—that is, they had pain every day for the preceding 3 months. Nearly 40 million adults (17.6 percent) experience severe levels of pain. Those with severe pain are also likely to have worse health status.
23.4 million adults (10.3 percent) experience a lot of pain.
126 million adults (55.7 percent) reported some type of pain in the 3 months prior to the survey.
Pain is one of the leading reasons Americans turn to complementary health approaches such as yoga, massage, and meditation—which may help manage pain and other symptoms that are not consistently addressed by prescription drugs and other conventional treatments.
Reduced gray matter volume can lead to memory impairment, emotional problems, and decreased cognitive functioning. Hyper-connectivity of white matter tracts between brain areas associated with negative emotions and pain perception can hardwire these corresponding states of mind.
The researchers used diffusion tensor brain imaging to analyze gray matter volume and the integrity of white matter tracts. Bushnell hypothesizes that increased size and connectivity of the insular cortex is probably the most important brain factor regarding changes in an individual’s pain tolerance and thresholds.
Yoga appears to bulk up gray matter through neurogenesis and strengthen white matter connectivity through neuroplasticity. After assessing the impact of brain anatomy on pain reduction, Bushnell believes that gray matter changes in the insula or internal structures of the cerebral cortex are the most significant players involved in chronic pain.
Rest & recreation – many of the massage therapies plus eg. reading, fishing
Social Integration – BWE, help love & trust
Movement Therapy, proprioception, athletics, Tai chi, basketball (adding rewards, fun sounds to baskets)
Bright light therapy is the treatment method most often recommended for patients with Seasonal Affective Disorder (SAD), a form of depression that occurs as a result of reduced exposure to sunlight in the fall, winter and spring.
I am a neuroscientist and basketball fanatic and spent the last seven years trying to understand “where” the basketball shot comes from. Is it from the body? Is it from the mind? Is it from some place outside of this world? The answers are a mix of science, mindfulness, faith & belief, mythology, and perhaps even shamanism. Sports science and brain science, in my opinion, does not fully explain what we see in some sports and in basketball. Perhaps there are outside influencessuch as from God, myths surrounding the basketball court, the spirit of Shamans? It is my work with drumming, athletics, healing, and brain science that led me to explore the “unseen influences” in basketball.
For fun, I’ve included some of my own mythology on super-human abilities made possible by the geometric shapes of the modern basketball court, and speculation that the court may have been designed by “celestial powers.” Well, it’s fun to consider!
Basketball is unique in that it encompases both sophisticated sport kinesthetics, and team brain science, which then allows the total effort to be greater than the sum of the individual contributions by players. This opens up incredible possibilities in teambuilding, leadership, personal growth, trance heightened (super brain) states, and team performances. So, where does the shot come from?
In a few words, it comes from the rhythmic progression (and memory) of the proper movements in your successful shot, and from belief and connectnessto your higher power. As basketball is a team sport, it also requires each player to connect with each other at the highest levels, termed brain-wave entrainment(or BWE). BWE is the brain to brain telepathic connection we experience that allows anticipation of passes & plays from team-mates, and your feelings and thoughts during play. It is a group effectthat influences each player’s belief in their higher power, critical during shooting and winning.
It is in these regards that I believe my work with drumming, the neurosciences, and rhythm & movement, can help basketball teams win. Group drumming is a form of group hypnosis that changes mindsets, connectedness, and one’s belief about a group such as a basketball team. Basketball parallels drumming in many ways thru its timing, coordination, anticipation, and syncopation. It is a great combination for winning!
Basketball is played today all over the world, and for a variety of reasons. In this blog, examine the mechanisms that lead to successful basketball play, some epic performances by top athletes, and attempt to explain it and provide methods that can be adopted by players and teams. In basketball, we seem many seemingly impossible shots. We see this in all sports. But it just seems more prevalent in basketball. Why is that?
In this blog, I also discuss playing basketball for health & fitness (as I do), and combining drumming with basketball – that can improve ball handling, shooting, timing of movement, and on-court communications. I also recommend basketball drills (and drumming) for short and long term management of concussion, brain injury, and neurological disorders.
Health & Science Topics covered in this Blog
1. Sports Science of Basketball
2. Brain Science of Basketball
3. Mindfulness of Basketball
4. Drumming with Basketball
5. Basketball for Health & Fitness
6. Mythology in Basketball
7. My Journey into Drumming & Basketball after Brain Injury
8. Use of Drumming & Basketball in the Treatment of Concussion
9. Sports Science Analysis: Who will win the 2015 NBA Finals
I became a neuroscientist following a brain injury in 1992. It led to my research with cognition, music therapy, balance & movement, and drumming or drum circles. By 2008, I had begun to apply my methods to basketball, initially with just balance & movement. But by 2010, this evolved into mindfulness and my search for “where” the shot comes from. My neuroscience study now spans learning, cognition, sensory processing disorders, movement & balance, mindfulness, brain wave entrainment (BWE), and shamanism. I’ve also been involved with medical devices, mHealth technology, and assistive technology.
In consideration of the 2015 NBA Finals between the Golden State Warriors and Cleveland Cavaliers, I wrote up my sports & brain science analysis of who I think will win the series. This analysis appears further down towards the end of this page.
Basketball was first introduced in 1891 by James Naismith, a physical education instructor for the YMCA. But the game and basketball court have evolved considerably since its early inception. The ball today measures 9.55 inches in diameter (WNBA 9.23 inches), while the basket measures 18 inches in diameter. At times, the basket appears quite large enough to accommodate the ball. While at other times, the hoop just seems far too small. There are quite a few measurements that govern the different sections of the court. There likely isn’t another sport and playing court with as many sections with separate rules governing each.
There is considerable sports science in basketball as the sport has been around for over 100 years. Below, is a list of the brain & sports science skills involved in basketball.
The Sports Science & Brain Science of Basketball includes
1) proprioception of movement, dribbling, passing, shooting, rhythmic progressions 2) shooting the ball, ball angles, trajectory 3) tactile senses handling the ball, and movement of the body 4) spatial awareness of oneself, and others on the court 5) physical strength, conditioning, and endurance of play (kinesiology) 6) on-court (mostly non-verbal) communications 7) team rhythm and brain wave entrainment (BWE) 8) defending of shots, strategy, interpreting intent of opponents 9) mentally execution of plays, improvising adjustments 10) mental mistakes, mus0cues, personal fouls 11) team and player analytics 12) design of the basketball court
Sports Science of the Basketball Court
Basketball has undergone numerous changes since 1891, and today holds few similarities to the original game. The Swish and BRAD slide below identifies the optimal sports science shooting arcs, while the adjacent slide reveals analytics of shooting by court section for the Miami Heat’s 2012 playoff run.
Basketball’s 2014-15 season sensation and league MVP, Stephen Curry, is getting all kinds of sports science coverage now for his 3 point shooting style. Not only does he utilize a high shooting arc, but he has a very quick release. He has already broken 3-point shooting records this post-season, with at least 4 games still to play. He is being described as the best pure shooter the game has ever seen, and I am particularly interested in his mindfulness and related brain science disciplines. These methods will help in further development of skills and health applications for basketball, and in my work with drumming for basketball. The sport science slides below depict Stephen Curry’s shooting technique.
This last sports science slide is on the bank shot and best shooting angles, as if you didn’t already know. Hit the correct spot on the back board, and the ball gets deflected into the basket.
In 2013, Muthu Alagappan, a medical school student at Stanford, got the sports world’s attention when he came up with analytics to help in preparing a roster that optimizes offense and defense on the court. Some of his concepts I think appeared in the movie, Money Ball. Alagappan thinks we need new definitions he calls, “Revealing Basketball’s 10 Hidden Positions.”
Muthu Alagappan’s 10 Basketball Positions
1.Jump Shooting Ball-handler (Stephen Curry) Handles the ball while being a focal point of the offense through deadly jump shooting. 2.Two-way All-star (Kobe Bryant) Elite offensive and defensive player, who can dominate the game on both ends of the court. 3.Inside Outside Scorer (Chandler Parsons) Avoids the mid-range but scores often in the paint and from the three-point line. 4.Mid-range Big-man (Al Jefferson) Skilled rebounder and paint defender who also has midrange jump shooting ability. 5.Defensive Ball-handler (Kyle Lowry) Ballhandler that applies defensive pressure and looks to get his teammates involved on offense. 6.3-Point Ball-handler (Klay Thompson) Ballhandler who features an offensive arsenal highlighted by 3-point shooting. 7.3-Point Specialist (Shane Battier) Role player who’s offensive role is almost solely to shoot 3-pointers. 8.Low-usage Ball-handler (Courtney Lee) Ball-handler who can fit in to various roles on a team but lacks a clear identity. 9.Paint Protector (Larry Sanders) Menacing interior defender that protects the rim and deters opponents from driving to the basket. 10.Scoring Rebounders (Tim Duncan) Big man who serves as a team’s primary scorer and also rebounds with consistency.
Muthu Alagappan has become a consultant to a couple of NBA teams with his methods, which I find well founded in science and mathematics. His conclusions are supported by game analytics, as are the declining analytics of players attempting successful 2nd and 3rd consecutive 3-point shots.
The Physical Science of Dribbling, Moving, and Shooting the Basketball
The handling, dribbling, passing, and shooting of the basketball integrates tactile skill of the hands and fingers with kinesiology of skills training, with proprioception of physical memory and recall of the shot (and related court movements).
Tactile skillis the sensation of touching the ball with your hands and fingers, and integrating this with the spatial awareness of your feet and body. This sensation also helps with balance and coordination, as we use our fingers and hands in body movements, i.e. hand/finger movements sprinters use as they run, wrestlers during a takedowns. Tactile sensation during movement is also important as we age, and after a neurological events (as happened to me) affecting one’s balance or movement.
I intuitively developed new methods in tactile movementfollowing my 1992 brain injury. In 2004, when I became involved in hand drumming, these tactile methods evolved to include “rhythmic” movement. My hand and finger movements significantly help my short term memory, balance, and initiation of movement. I feel these methods can not only be applied to basketball, but also to aid balance, cognition, and movement in everyday life.
Kinesiology is more a macro science of movement and spans physiological, psychological, and mechanical mechanisms. It encompasses physical and psychological training, on court body mechanics for optimal movement, and techniques to help avoid injury and keep players conditioned.
Proprioception is more the micro science of movement, defined as the sense of relative position of different parts of your body during movement, and spans memory/recall of specific body movements such as dribbling, sprinting, passing, and shooting. It is also referred to as “muscle memory,” as it defines the network of sensors in our joints, tendons, muscles, and ligaments which remember specific task movements. It allows a player to dribble, pass, and shoot with considerable accuracy. Proprioceptive movement also involves key portions of the brain as the slides indicate.
Keen tactile skill, kinesiology, and proprioception no doubt play and integral part in a player’s skillset and success on the basketball court. I am particularly intrigued by the skillsets and shooting capabilities of finesse players like Kevin Durant and Stephen Curry, pictured below. Each has majestic type shooting mechanics and have scored over 50 points in a game.
Sports Science vs Mythology: Where does the Shot come from?
There are no doubt scientific factors responsible for players having super-skills on the basketball court. I hope that Stephen Curry & LeBron James can help us answer some of these questions in this 2015 NBA Finals. But, what I am referring to, is beyond sports science. Beyond what we can fully prove. It is the unseen influences in the human condition that is so prevalent sports, and especially so in basketball. It can be viewed in terms of psychology, mindfulness, faith & belief, shamanism, trance states, or perhaps the celestial design of the modern basketball court. Let’s start with the design of the court.
The arc of the 3-point line, where much of the play takes place, appears to resemble the curvature of the earth. The basket is situated at the base of the arc, much like either the sun or the core of the earth. As players move about on the court, they seek to know their orientation to the basket, much as we seek to orient ourselves to the sun and core of the earth. The players’ knowing of their orientation allows them to make accurate shots in the basket. The current field goal shooting space inside the arc was traditionally where the game was played. But in more recent years, it has been expanded beyond the arc in 3-point shooting.
This space beyond the arc is where players yearning to become celestial godsdare to shoot. The space inside the paint is where mythical players look to defy earthly gravity. This court design seems to invite individuals with unique skillsets to try and master these spaces. Many try. But only a select few succeed. The game and court seem perfect! If you look at the geometric shapeson the court, you can see how they mirror the shapes of our planet’s magnetic and gravitational fields. And this gives rise to mythology in basketballand speculation that there is a link between the court and the super-skillsof players. Note the shapes of the images in the earth’s magnetic and gravitational fields.
As a scientist, drummer, and multi-sport athlete, I can attest to something occurring in the brain during your mental preparation, and into your rhythmic progression of the athletic maneuver. I think it closely resembles mindfulness visualization. Coach Phil Jackson wrote extensively on mindfulness. As a scientist, I can say that athlete super-skills would likely occur either as faith and belief based hypnosis, trance states, or shamanism. Super-skills have been scientifically confirmed thru study of “trance heightened states” on fMRI brain scans of individuals. I suspect this would also occur in athletes.
Proprioception and Rhythmic Progression of the Basketball Shot
We’ve discussed sports science, shooting angles & trajectories, tactile skill, kinesiology, and mythology. But where really does the shot come from?
During shooting, you have your own unique rhythmic progressionthat allows you to store & recall your shot – albeit through proprioception. During a game, there are also opponents pushing and bumping into you, and it disrupts timing and a good “look” of the shot. But it is the exceptional shooter who can alter the mechanics of the progression and shot, and fit it into the tighter spaces created by the defense.
It is your body’s proprioception that allows you to execute these movements with very limited conscious thought, part of your “somatic” nervous system, where movements of your arms, legs, and body can be pre-programmed to rhythmic cues. Rhythmic movementalso aids our memory in doing every day tasks like brushing your teeth, washing dishes, and driving your car, which are integrated into your broader tactile awareness and complex movements.
Rhythmic progressions are become a pivotal part of all sports play, plus are found in repetitive activities like drumming, hammering, and most skill trades. I found hand drumming to be uniquely helpful with tactile perception of the hands and fingers, and it can be applied to basketball and activities in everyday life. In addition, rhythmic sports like basketball invoke team brain wave entrainment, or BWE, the same principles found in drumming, or drum circles.
BWE is a mirroring of “brain waves” between members of a group in a heightened and connected similar activity. Brain waves normally occur in five (5) frequency ranges: delta, theta, alpha, beta, and gamma, as measured by EEG instruments and brain wave sensors available for mobile devices. BWE determines in part how we learn in a classroom, and how we communicate and influence one another in life. BWE is also involved in why women who live or work together tend to synchronize their menstrual periods to the same times. For more on BWE, see my blog on use of “drum circles” in the workplace.
BWE methods help with “brain wave” control in movement, timing, attentiveness, communication skill, and stress reduction. The methods actually date back thousands of years. But only more recently, have they been understood. Below, Charles & Kenny do a little drumming during their TNT coverage of basketball.
The Role of the Mind & Belief System in Basketball
I find basketball to have many similarities to gymnastics in that the trick or shot is actually done in your head, before you execute the shot. This requires that you visualize, believe, and execute a specific rhythmic pattern to carry out this vision. And the more positive you are about the shot, the higher your accuracy. The above photo caught the sun’s morning rays in a precise covering of the ball, suggesting the role of spirit and belief in the basketball shot. These prospects further drive fans to the game to watch players try and achieve out of this world performances.
In his book about mindfulness in basketball under the title, “Sacred Hoops,” Coach Phil Jackson says these methods were largely responsible for his success as a coach.
During the 1970s and 1980s, I was particularly engaged and changed by a number of books on the mind and philosophy. At 30 and at 6’2”, I became involved in gymnastics so I could explore visualization and mindfulness. These principles are pivotal in basketball and sports play according to the great players.
This IS where the basketball shot comes from…. BELIEVING! Remember the Disney movie, “Peter Pan?” How did he fly? Happy Thoughts! But, he had to first BELIEVE.
The science of BELIEVING is that you must first KNOW. And KNOWING — comes from DOING! So you must practice the fundamentals to learn your craft, albeit flying, gymnastics, or basketball. Do these things, and somewhere along the way, you will come to KNOW and to SEE what you need in order to BELIEVE.
On the subject of believing, I share this powerful blog on my many years of experience in healing, mindfulness, and preventing injury.
I suspect this is how Stephen Curryand other top shooters achieve high skill brain states. In addition, it requires a vision and BELIEVING, as seen in players like LeBron James in leading other players to greatness. It is a philosophy, a practice, and way of life.
In my personal experiences in shooting on the court, I’ve found a “communion” of sorts in following my higher power’s “direction” in selecting the spots & mechanics for each shot. Even for a very difficult shot. When you follow that “direction,” something magical happens. It’s as though there are “forces” that govern which shots allow the ball to pass thru the basket. You must be in communion. Might it be tied to astrology? I can’t say.
Exceptional players like Michael Jordan, Magic Johnson, LeBron James, Kobe Bryant, and Stephen Curry have evolved into mythical figures. Bryant as the Black Mamba. James as the Chosen One. Curry as the Golden Boy. I can only speculate on their brain, spiritual, and physical mechanisms on the court.
Another mindfulness practice I am intrigued by is how some athletes are able to compartmentalize pain from injury, and not let it be a distraction during play. This is counter to what we know of pain and its impact on mental focus and performance.
I have personally had several instances of “spontaneous healing,” where all signs and complaints with an injury or illness would immediately disappear. The 1998 photo below is from one of my brain shunt surgeries, where I used mindfulness to help manage pain.
In 1988, Isiah Thomas had his best quarter of basketball ever when he shot 14/15 (or something near that) in a game against the Lakers, with a sprained and swollen ankle that hobbled him on the court. It requires mental focus to make difficult shots. Pain would normally be a significant distraction in shooting accuracy. Just look around the NBA and other sports on why players are out. But Thomas played his best basketball ever on one foot. It’s unfounded in sports. How was he able to do this? Mindfulness/hypnosis? Spirituality? Shamanism? Trance heightened states?
We each choose our own discipline(s) to try and attain excellence in basketball and in life. Some of us are blessed with “genetic predispositions” which allow us to excel. Most must learn these. I regularly see the emergence of genetic predispositions in my drum circles. No doubt it occurs in other therapies as well. Below, I am interviewed and discuss how a drum circle is used to bring change to your life.
My Brain Science Work: From Drumming to Basketball
My 23-year journey from my 1992 brain injury has become a personal journey and mission. Many of the re-learning, balance, and movement methods I’ve used have come to me “intuitively.” In my initial neuropsych testing in 1993, the UCLA neuropsychologist was amazed at how in just 6 months I had created compensatory strategies to help address my challenges – without any therapy. In the years that I followed, my methods grew to include cognition and memory, integral in the 1997 design of my DiaCeph Test app for hydrocephalus, and methods in balance and movement. In 2004, drumming began to enable new intuitive, or shaman, type skills where I added rhythmic cues to movement and cognitive actions. Then, armed with new neuroscience research, I began to explore methods and insights into BWE, or brain wave entrainment, and human behavior.
Within a few years of my brain injury, unbeknownst to me, I began using finger movements and would tap on myself and on things around me, throughout the day as I moved about and initiated ordinary tasks. I initially did this while driving to help concentrate while at busy intersections. Then eventually I was doing this throughout the day to cue everyday task and movements, without consciously being aware of it. I would do it when I got dressed, put on trousers. I do it at the counter in the kitchen, while brushing my teeth, and as I prepared to drive off in my car. I would do it all day long. The cues allow me to think and move about much easier.
On the basketball court, I use these cues to direct my step, dribble, turn, and shoot to deliberate patterns. These “cues” allow me to move about and shoot more effortlessly. Off the court, I have some balance problems and am often in a lot of pain, and am dependent on my hand and finger cues. When I play hand percussion in drum circles, I often play Afro-Cuban rhythms I’ve never studied. I play what comes to me, a lot like the cues.
In everyday life, I utilize hand-finger movements to boost mental focus & cognition. It may seem a bit like gang signs found in hip hop music. But, I don’t follow hip hop. I have no idea where they came from, other than my brain’s compensatory adaptation. And even more unusual, the other day I found myself wanting to howl along with several dogs who were howling to nearby sirens at the super market. No doubt, this arose out of an increased sensitivity to things around me and wanting to be in BWE with the dogs.
The brain science of many of my compensatory methods can be found in scientific papers. Since 2008, I’ve also been using fasting and following calorie restriction methods on eating – to boost health, energy, and mental focus. Today, I also write about Nootropics vitamins for the brain.
My experiences might seem a bit like Ron Howard’s 1980s anti-aging movie, “Cocoon?” But this is real. Mindfulness, shamanism, and trance heightened states enable the brain to function at significantly higher levels. And it’s confirmed on fMRI brain imaging. It’s gifted me to write about and put on very innovative drumming events & workshops.
Today I shoot baskets for the body/brain fitness buzz, and it helps my balance, coordination, cognition, stress levels, and mental outlook.
Basketball’s health & fitness benefits are well known for children, teens, adults, and seniors. In addition, it can provide therapeutic benefits to persons with brain, spinal cord, and movement disorders.
From my experiences on the court and in drumming, I’ve created a program of basketball drills and a program for drumming. There is a synergy between basketball and drumming, as both involve rhythm, movement, syncopation, and brain wave entrainment (BWE). These photos demonstrate drumming’s benefits in tactile perception, rhythm, coordination, and team brain wave entrainment.
My Personal Basketball for Health & Fitness Methods
I’ve got more than seven (7) years of experience in basketball for health and fitness. Below, I share my shooting preparation, and drills and shooting on the court.
In order to be physically readyto shoot, I do a series of floor and rubber band stretches and mindfulness visualizations for 10-25 minutes. This helps to clear your head and prepare you physically for the demands you’ll be faced with in dribbling, moving, and shooting. It also helps get you “tuned into” your high power for direction on the court.
On the court, I begin with left and right hand, between the legs, behind the back, and closed space dribbling. I make sure my footwork matches anything I do with the ball.
Next, I do dribbling with shots from left to right under the basket. This helps address any stiffness or dizziness. And some days I require more turning and dribbling drills warm-up. I continue shooting under the basket, as I shift between right & left handed shooting. I am left handed. But, I will do as many or more shots under the basket with my right hand.
Next, are my bank shots, where I gradually move to further distances around the court. By this time, I am usually beginning to “feel” the shot and come off the ground a little as I shoot. I allow my body’s momentum to lift me off the ground. I rarely do jump shots as it reduces my shot accuracy.
Once I am fully warmed up, I move to field goals, where I enjoy moving about the court, shooting what my shots and rebounds give me. I listen to my body and to the basketball gods in deciding what my next shot & drills will be.
By now, I’m 20-25 minutes into my workout, and begin free throws, which as anyone knows, can become contentious and mentally challenging. I would like to do some training in psychology of free throws as I can struggle at the line. I know it is usually something on my mind that is interfering. So this often becomes free throw therapy! I mean, we all need some outside help!
Depending on how this goes will determine whether I do layups, or 3-point shots next. Both of these have become a little more difficult over the last year or two (I am now age 60). Still, I follow what my body gives me. Often times with 3-point shots, I’ll do shots inside the arc to warm up my shoulders for the further distances. Since free throws and 3-point shots can be contentious, I sometimes use really different techniques (and two handed) and shots to just stimulate my body and balance. When I can, I’ll let out a shout or two in frustration (which I think is very helpful). But I’m courteous to nearby neighbors.
On layups, I do standard, reverse, and under handed styles. I do as much as my body and mindfulness allows. I used to be able to sprint/dribble back to my house. But not in the past couple of years.
I’ve developed methods that allow me to become successful at being my own psychotherapist & physiotherapist on the basketball court. I listen to my body and mind, and pay close attention to my shots and mechanics on the court.
I find that opposite hand shooting helps to balance and calm me on the court. Scientifically, it means you’ve engaged both hemispheres of your brain in shooting. I always leave with a better buzz when I’ve done amply opposite hand and free throws. This becomes a lot about poise and balance. I suspect these drills and methods lends itself to some trance heightened state brain activity. But I’m only supposing.
I have on a number of occasions added hand drumming before, and after, shooting. Twice I was able to add some basketball to drum workshops I held, with excellent feedback. I am very interested in doing more drumming with basketball workshops.
Drumming with Basketball: Some Background
Drum rhythms define a very precise pattern and are remarkably similar to an athlete’s movement on the basketball court. If you play or shoot baskets for fun or fitness, you will experience rhythmic progressions in your shooting, passing, and dribbling. This can put you into an altered state of consciousness, or Nirvana of sorts. You might even enter a trance state. The main difference is with drumming, that you can enter into these mind states without being an expert drummer or musician. Trance states and rhythmic patterns are indigenous to us all. You need only find the right discipline. The children below put on a drum circle during half-time at a Bay area basketball game.
In basketball, passing, shooting, and on-court communications largely occur due to syncopation and brain wave entrainment. To aid syncopation, drums have been used in military training and battlefield maneuvers for hundreds of years. Drumming has a long history with African shamans. In some parts of Africa, drums are brought and played next to the basketball court. For these reasons, drumming is a great training tool in basketball.
Drumming and shamanism are very rooted in African culture, where mindfulness and trance heightened states are rooted more in Western civilization. They may be one and the same brain mechanism – arising from different cultures. These disciplines no doubt hold tremendous insight into future human development.
Drumming is an unusually good fit to basketball because of team play, rhythmic movements & beats, and brain wave entrainment or BWE. Drum beats and BWE can help synchronize plays and on-court communications in basketball. It can help in heightened awareness of ball movement and connectedness on the court.
Drumming and Basketball Methods
Drumming with basketball can be adapted both to health & fitness, and team play.
Health and Fitness
Split a group into (5) parts consisting of: sitting down hand drumming, standing shakers & bells, standing sound shapes, on court ball handling & shooting, standing playing (tapping) on your body. These play parts are about movement and syncopation. Playing and shooting is about moving every part of your body in a coordinated rhythm. Within several minutes, a group rhythm evolve and synchronize between all the parts of the group, and there will become a magical synergy that will aid both those playing instruments, and those with the basketballs.
1. Warm up with the above drumming for basketball fitness program
2. Next, 5 players take an instrument and spread out on the court in their respective positions as follows:
-center/power forwards on bass and large djembes
-shooting guards on mid-size djembes
-point guard on either shaker or bell
3. The objective is to communicate and synchronize sound and movement, and take turns leading by position. Each of the instruments offers a unique role in leading a drum circle, as does player roles/skillsets in basketball.
4. The role of the bench is to support the drum circle via misc small percussion, clapping, and vocal calls and chants from the sidelines, where the bench is given opportunity to lead the drum circle both from the bench, and once they enter the game, since their role in syncopation has already been established.
5. Lastly, the role of the basketball drum circle is to continue to play even when you fall out of rhythm, as your commitment to keep playing so as to re-establish your rhythm, is synonymous with staying on your game plan even when you’ve fallen behind and out of rhythm, because eventually you will re-connect. The drum circle and basketball play circle are both very similar and teaches players about team building, trust, believing, and staying together. And sometimes, you need to let it all go, to get your MOJO back!
Drumming & Basketball after Concussion (esp Football)
Drumming and basketball can be used in the treatment of concussion symptoms, and for long term management of concussion symptoms and neurological disorders. Athletes are advised to take it easy and not engage in substantial physical or sensory stimulation activity. Light physical rhythmic moving and shooting basketball meets the post concussion protocol criteria. Adding drumming to basketball helps players relax, and improves spatial awareness, physical coordination, and cognitive skill. The benefits are optimized when shooting or drumming outdoors in a park setting.
I’ve done some research with sensory processing disorder, or SPD, and with difficulty in cognition following brain injury and hydrocephalus. The spectrum of symptoms seen following concussion includes: sensitivity to lights, sounds, and scents (termed SPD dysfunction), migraine, problems with balance, awareness & disorientation, and irritability, which can trigger behavioral outbursts and irrational conduct. The symptoms can render an individual with challenges in cognitive accessibility in terms of reading and understanding written (user) instructions, web sites, mobile devices, and with sound intollerance in public places, and television and radio broadcasts (esp commercials).
This page I wrote for incorporating drumming into football programs. If you’re interested in using drumming for post concussion activities, or treatment of concussion along side NFL & NBA concussion protocols, please contact me directly for more information.
The 2015 NBA Finals offer a unique opportunity to analyze sports science and brain science of two basketball teams. I discuss the major differences between the Golden State Warriors and the Cleveland Cavaliers.
The Golden State Warriors are a rhythm & tempo teamwhose success relies on passing and movement to establish a fast up tempo BWE. As they do this, they become more synchronized than any team in the league. Their smaller guards, especially Stephen Curry, allow them to move quickly to perimeter positions, where they are very effective 3 point shooters. This up tempo BWE entrainmentalso allows them to steal a lot of passes. BWE states enable players to be more dialed in and this helps in passing and shooting, and in steals and rebounds. Their fast tempo and synchronization frustrates opponents, who get out of their game, positive believe, and synchronization. Golden’s States quick guards and power forwards give them good control of the perimeter. But their primary center, Bogut, can be a liability on offense. Their up tempo game, along with a deep bench of quality of players, makes them a powerful opponent.
The Cleveland Cavaliers strength, by contrast, lies in their physical dominanceof guards LeBron James, Shumpert, and Smith. They can be a good 3-point shooting team too. They are still trying to find their sync and BWE as a team, and were hurt when Love went down, as it threw off their scheme with role players – much as it would if a key piece or two of a drum circle left. They have also been playing without Irving for part of these series, which required further adjustments. Depite all this, Cleveland regrouped through the exceptional leadership and physical dominance of LeBron James. But will it be enough to defeat Golden State? I don’t think so. Not unless LeBron can pull another layer of shamanism or trance heighten states out of his arsenal. And James is capable of this.
Cleveland can be very dominant on defense. But their larger guards could also be a disadvantage up against Golden State’s faster offense. Cleveland can get into as good an offensive groove and BWE as any team in the league, and be difficult for Golden State to stop. They’ve done this in the last two series in spurts. If they can sustain this push and sync – then look out. I don’t think Golden State can contain Cleveland in one on one matchups. By contrast, Golden State has had more time with their personnel. Cleveland has only had part of a season. Cleveland would have to play at 110% for 5+ games, whereas, Golden State could play 100% for a couple, and cruise at 90%.
Who wins this series will be determined by which team can sustain their team BWE and style of dominance the best, and of course, also least affected by injuries. Golden State has the advantage with a deeper bench.
Because of the above, I give 65:35 odds to Golden State prior to Game 1.
Going into Game 3 in Cleveland, my how things have changed. The teams split the games in Oakland. But Cleveland outplayed & out hustled the Warriors in both games. With the Cavalier’s new found “faith” and team BWE led by LeBron James going into Game 3, the team has raised their level of play over the Golden State Warriors.
As I said in my sports & brain science analysis, the Warriors are an up tempo BWE team led by Stephen Curry. If Curry can’t get going, the Warriors will never get into rhythm. Unfortunately, neither Thompson nor Green can set the BWE for an entire game.
LeBron has lead his team thru the adversity of missing 2 of their best all star team mates. He is no doubt utilizing some type of Shamanism or trance states in these games. At home, he is even more connected tonight. His BWE & vision is driving his team. Curry, by contrast, has become “disengaged.”
Where does the basketball shot come from? Believing! Knowing!
Post Game 4 Thoughts:
The series took on new life last night as Steve Kerr inserted a small line up. I think Curry was told to come out shooting 3s & FGs even if he was missing, which he did. Cleveland was playing a big line up that worked in the opening minutes, but quickly changes once Golden State spread out and began shooting. It wasn’t long before these FGs began going in, which forced Clevelands bigger line-up to the perimeter – and they couldn’t keep up.
For Golden State in terms of tempo & BWE, the biggest change was in having Andre Iguodala start & take over the offense. It wasn’t long before Golden State responded to his up tempo presence and leadership, and took all the pressure for this off Curry (who had been caving with the pressure).
Cleveland began to tire by the end of the 1st Q, and their FGs & 3s were suffering as both James and Deli began cramping up. James’ crashing into the stands and suffering cuts to his head didn’t help either, and seem to become a distraction. The Cavaliers failed to utilize their bench sufficiently.
So I think that’s where this series stands. Cleveland must find a way to use their bench as Golden State stays small. Kerr will look for continued BWE leadship from Iguodala, a new team formula. Cleveland is yet to adapt to Iguodala’s (unexpected) veteran BWE leadership. Golden State responded well to him. So it’s Cleveland and James’ turn to counter. James must once again reinvent himself for these next two road games. I suspect they will grab one so that Game 7 comes back to Cleveland. This series rests on veteran BWE leadership and a supporting cast to match.
Where does the basketball shot come from? Trusting. Believing!
Post Game 5 Thoughts/Game 6 Preview:
Game 5 was either team’s game, despite Golden State going in with some momentum and new strategy. James established his dominence early, and JR Smith set the tempo with 3 pointers. For Golden State, it was Curry got off to a good start, and their bench contributed early on. Both teams went small.
With James playing guard, power forward, and some center, he (and his team) ran out of gas in the 4th Q, and Golden State ran away with it in the final minutes. Projecting these two styles of play and performance going into Game 6 in Cleveland, it’s still anyone’s series, though there’s a clear pattern of Cleveland tiring in the 2nd half.
My projections for Games 6 & 7 give the typical edge to the home team. But I think the bigger factor could be “strategy.” Each team has been able to exert dominance with their style of play. Cleveland has been able to contain Golden State with slower tempo and half court play, where Golden State’s best strategy has been to wear Cleveland down. Now it is up to coach Blatt to formulate an answer, such as inserting a rested Mozgov in the 4th Q, slow down the game, and control rebounding.
Stephen Curry has improved over the last two games in getting shots off very quickly with defenders all over him. This will be a big determinent for games 6 & 7. While he is making shots, I’m not convinced Curry has found his way in leading amid the storm of defense that Cleveland can apply. I look for Cleveland to go a little bigger in Game 6 and slow the game down, as it will force Curry into tighter spaces to shoot. Also, Curry was able to open up the floor and paint when Cleveland went small, giving him better looks at 3s. I look for Cleveland to win Game 6 and for a Game 7 back in Oakland. Who will win Game 7 would then be determined by best strategy & adjustments, and whether Cleveland has the stamina to finish the game.
How was Peter Pan able to fly? Happy Thoughts!
Post Game 6/Golden State Finals Championship Thoughts.
It was a great series. But it was obvious from the opening minutes tonight, that the Cleveland Cavaliers were gassed mentally and physically from being short in personnel. And it was obvious in the early turnovers that they weren’t connected and thinking well as a group. Still, they maintained composure. But it wasn’t enough, as Golden State got into a team rhythm, established a team brain wave entrainment (BWE), and never looked back throughout the entire game.
BWE is the wonder of neuroscience that allows a group to excel beyond the sum of its individual parts. Some even enter into “trance heightened states,” affording them incredible vision and super-skill that can drive the team to overcome significant odds, solve great problems, and attain remarkable accomplishments. In this series, Andre Iguodala & Stephen Curry had done this for Golden State.
Hats off to the Golden State Warriors as the 2015 NBA Champions.
Best wishes to the Warrior’s organization.
I can be reached in Newport Beach, California via my contact information below. CLICK & SAVE my JPEG card for future reference.
I am writing this post largely in response to the New York Times story on abuse of psychostimulant drugs like Adderall & Ritalin, which are used to treat ADHD and ADD learning disabilities. In recent years, however, college students and others under pressure to perform at work and meet deadlines, have leaned towards taking psychostimulant drugs to stimulate cognitive performance, overcome tiredness, and avoid brain drain. The problem is, as many have learned, is that what goes up, must come down. And now there are reports of many young college students and workers becoming “addicted” to psychstimulant drugs.
If you ask my opinion, I think the answer to optimum cognitive performance and brain health, is proper rest, proper nutrition, and learning how to engage your brain while undertaking various activities. Unfortunately the latter, is a lifelong adventure of many different types of learning methods, philosophies, and trial and error to see which ones serve you best. For me, the most effective ones were those that challenged my belief system and learning biases. Obviously, these fans below at the Ohio State foolball game were highly engaged, though likely also with the aid of alcohol (that helps get you out of your shell).
Rest is a must for optimal brain performance. Remember what your mother told you? Get some exercise, work hard, and you’ll fall right asleep in the evening. But today, there are a myriad of supplements like melatonin to help you sleep without prescription drugs. Exercise is critical because it improves blood flow in the brain, and helps lower stress. And a glass of (preferably red) wine and a boring TV program, or nice book, will help you get to sleep at bedtime.
On nutrition, I say don’t overeat. Don’t eat junk food. Don’t drink too much alcohol. And don’t smoke! Drink plenty of fluids. Spend some money on good vitamins, maybe $30-50/month. There are many designer brain vitamins today too such as fish oils. And don’t think you’re going to find a solution in one or two vitamins. You have to try different supplements, and possibly find one or several that really works for you.
Next, exercise is key in managing stress, boosting blood flow in the brain, and workplace wellness. And sex is very good for you too. If need be, find an XX budy or two to serve those needs, unless you are strong willed and spiritually minded enough to overcome these human drives. Aerobic exercises with “rhythmic” movement core are the best for bringing oxygen into the brain, and for relieving stress. “Rhythmic” activities like walking, running, swimming, tennis, DRUMMING – help to balance the forebrain & hindbrain brain waves, and reduce stress.
Now, what I can tell you from my experiences with engagement and learning, is that it is a skill that must be learned. Some people develop this at a very early age, and can excell in school. For me, it started in junior high and developed slowly thru high school and college. But, it wasn’t really until I was about age 30, when I reached a point, where I could read something once, and completely absorb it. I somehow learned how to learn efficiently. It’s like anything you do, it’s in the “technique.” For you, you will have to figure out your own course and best methods. There are workshops and courses to improve learning. I’d go for established workshops and courses that challenge your “belief system” and the manner in which you learn, espicially if you are struggling with learning. You need a change in your beliefs & biases.
For me, after my 1992 brain injury and development of hydrocephalus, life and learning took on an entirely different meaning, especially in navigating through all my various shunt malfunctions and changes in cognitive performance. I think mostly it was my new learning methods utilizing my intuitive reasoning, and then analytical reasoning, that eneabled me to overcome my learning challenges. Analytical thinking allows you to reason and recall based on the “probabilities” of the most likely answer. To access your intuitive reasoning, do this by not pressing for an answer, rather, calmly ask your brain for an answer, a give it little time. You can get some amazing results when you learn to use your intuitive reasoning.
As for stimulants, I took “No Doz” in college. And as an adult, I’ve used coffee, vitamin stimulants, and potions they sell at check out of most stores. One of my favorite stimulants I’ve come to like in recent years, has been Green Tea capsules by Jarrow. You just need to find the number of, and time frame, for the capsules to optimize your brain state.
And lastly, you must learn how to “jump start” your brain avoid “brain drain” while studying at home, or busy at work. The answer is a combination of optimum learning methods and employee engagement, where you “engage” your brain in activities that put you in the optimum “brain wave state” for performing your task at hand. There are several brain wave sensors available today that you can couple to your computer or mobile phone. But I’m not going to promote these here.
As for brain wave states and brain wave entrainment, there are certain times of the day, and specific activities, where certain states of beta vs. alpha brain waves are going to the most optimal for your task. You can actually alter your brain wave patterns thru music, drumming, rest/meditation, exercise, or any activity that allows you to synchronize your body movements and tempo to a given signal. The goal is to find the optimum brain wave state that will make you the most productive for any given task. And it also is denpendant upon time of day, and your state of mind/rest at that time. Brain wave readers can be helpful in letting you know your state. But you can also sort of sense this if you do it as an everyday practice. My concern with brain wave readers, is that you could end up getting neurotic over controling your brain waves. There is no simple solution. Companies must be more attentive today in workplace wellness, employee engagement, and any abuse of psychostimulants. The natural course of best learning methods, and learning to better use intuitive reasoning, and analytical reasoning, in solving complex challenges at work.
If you haven’t already done so, you should take a look at what I’ve written on the brain science of “basketball,” specifically relating to mindfulness. I have a good 7 years now utilizing basketball in this fashion, and I can attest it provides a tremendous buzz in mindfulness and stress relief.
The solution is to do ALL of the above, and develop a system for yourself and within your company that works best for you.
Below, is the New York Times article that appeared on April 18, 2015:
On March 16, 2015, as a neuroscientist and intuitve of sorts, and drum circle facilitator, I posted on my Facebook and LinkedIn Orange County Drum Circle groups that I’d like to organize some “Drumming for Rain” drum circles to help bring rain to California. On April 6th, I wrote this blog in support of the spiritual and cognitive neurosciences aspect of the proposal, and since added my supporting experiences. So, this blog has been a work in progress. I haven’t updated since June 2015. but wanted to enclose the links to the two OCDC groups where this began, and which would host content if this ever comes to fruition.
I am suggesting three or four coordinated drumming events in all, with the first one beginning as early as June 2015. I renamed this blog, and going forward, it will serve as a key piece of the project’s information platform.
I am reaching out to regional drumming groups, American Indian tribes, and other organizations with an interest in drumming for rain. The format will follow best available spiritual, physical, and entrainment methods in drumming for rain.
This idea originated this past January when I had a vision on how multi-site drumming events just might help bring rain to California, and end the drought we’re hearing so much about in the news. I thought it might become a fantastic idea, organizing groups, calling upon the spirits. Positive human energy! True intent!
I have had passion for various kinds of drumming for more than 10 years, but particularly, drumming with nature, animals, and spiritual causes, and I regularly utilize his spirituality in my drumming events and workshops. I’m following a “vision” on how this project should proceed. Since 2005, I’ve organized over 100 different drumming events, and I feel guided in organizing the various groups to bring this about, and bring rain to drought-ridden California. I was inspired in 2008 when churches in the Southeastern United States organized prayer groups to help bring rain to the five year drought that affected that region. I also written to Goerge Nouri over at Coast to Coast Radio to share these plans.
Some of my past experience in drumming for weather and nature includes a 2007 “Drumming for Snow” event outside the Stefan Kaelin Ski store in Newport Beach. The following morning, it began to snow, and it snowed for four straight days.
I have been playing in drum circles since 2004, and organizing drumming events since 2005. My drumming with nature and animals has included: drumming for snow, horses, birds, sea lions, whales and dolphins, neighborhood dogs, and many numerous eco, full moon, and solstice events.
My experiences with the spirit world date back to his youth with American Indian cultural activities in Ohio and Michigan. In high school, I was found to know things he had no way of knowing. This led to his reading books on the mind, philosophy, meditation, and healing. In 1973, I began college in pre-med and became fascinated with psychology. But, my heart was not in medicine per say, so I switched my major to nuclear medicine technology, a branch of medical imaging, where I could continue reading and spiritual interests.
In 1981, I developed the ability to sense illness in my nuclear medicine patients, now termed a medical intuitive. Between 1981 and 1992, while working as a nuclear medicine technologist at numerous facilities around Orange County, California, most of these years with my own company, Certified Nuclear Imaging, I interviewed hundreds of sick and dying patients who shared their inner most thoughts and fears about life and death. What I learned, would astound you. I took an oath not to breach their privacy. But where able to, I would share some key experiences and stories.
As part of this Drumming for Rain project, I’ve reached out to two American Indian friends who are percussionists for their input and guidance. And I am contacting others with experience in drumming for rain. Then I’ll write up the suggested format for the events, to be shared with interested groups. I anticipate anywhere from 5 to 25 or more drumming, American Indian, and other groups will join this project, and play “sychronously” at the set times. I feel the synchonicity and energy could help produce the needed spirit call for rain in California. The locations shall be determined in the next several months by the area groups. I’ll post it here, on my Facebook & LinkedIn groups, and share the various web site and groups who will be participating. Follow your spirit guide as to where to play.
Likely Dates: The 1st event could be as early as mid June 2015, with 2-3 others scheduled Sept-Dec to reach into the rainy season. Each location/group can then tailor the drumming format to their own drumming practices and level of familiarity. Follow your spirit guide as they say!
Below, I am seen playing to sea lions along the Pacific Coast near Carmel in 2014.
In the unusual 2009 photo taken at a large full moon drum circle, there are thought to be spirit images or animal spirits, in the flames of the bonfire. I would regularly attend and often lead this drum circle, and would channel my energies to heal others in the world and around us.
On numerous occassions, I’ve witnessed drummers leave their present state of mind enter into likely “trance heightened states.” There are documented medical studies of musicians, monks, people who fast, and others in disciplines where they can channel themselves into “trance heightened states.” SEE the Power Point from 2011 I delivered at Wright State University. I believe when athletes get “in the zone” and deliver amazing on field play, they too are in trance heightened states. Many credit God too!
My American Indian influences began as a young child growing up in Cincinnati, Ohio, where I became exposed and fascinated with American Indian culture, practices, and traditions as early as age 3. In the summers, I would travel with my family to Northern Michigan, where I was exposed to American Indian culture. Ohio and Michigan had very deep and positive American Indian historical connections. In the forest by where I grew up, we named a particular hill and lookout “Indian Flats,” and regularly hiked to this site. At Summer camp, I made Indian crafts and clothing. At night, I would wander about with my brothers and kids from the neighborbood, and this is really where I honed my nightime telepathic skills. Between ages 5 and 16, I spent a considerable amount of time in the forest. At 16, I had my first documented intuitive, or paranormal, experience of knowing things. By 21, I was able to call upon these abilities without outside assistance.
In the photo below, I am seen speaking at Wright State University in Dayton, Ohio, on drumming for the brain concepts in STEM3 education.
If you’re interested in drumming, you should start by taking a basic class or workshop in your area. There are plenty of instructors and stores which sell instruments today, and community drum circles to get started. Eventually, you might find yourself playing to the weather, to animals and eco events, on stage, or at a healing event or ceremony.
To learn more on my drum circles and drumming for the brain, visit my web site and web pages on drum circles.
My name is Stephen Dolle and that is me pictured in the photo two days after my 5th brain shunt surgery (Feb. 1998) for hydrocephalus which followed a 1992 auto accident. My ensuing brain shunt complications led to my becoming a patient advocate, neuroscientist, and inventor of the DiaCeph mHealth Test for hydrocephalus that I’ve used to co-direct my last 8 brain shunt surgeries, and provide consults and related patient care information around the world.
In 1996 I became involved in music therapy and related research. And in 2004, I became involved in “drumming,” or drum circles, and a year or so later became a drum circle facilitator. But in 2009, I began to experience unexplained muscle cramping that led to blood in the urine, and partial kidney failure on several occasions. A series of bizarre autoimmune complaints then ensued. And in 2015, an MRI brain scan revealed “dura enhancement,” and this was later diagnosed as “pachymeningitis.” The cause of my pachymeningitis has never been identified. So in March 2015, I posted my health challenge as a case study on my blog here, hoping it might lead to answers and a sort of “open source medical cure.” Further below is my 2015 CSF lab report, and MRI brain scans that evidence dura enhancement and pachymeningitis.
My hydrocephalus history spans 1992 to present with a total of (12) CNS shunt operations, or revisions. The shunt complications, poor outcomes, and confusion in my care during those first few years led to my doing field research, activities as a patient advocate, and then authoring of this important 1996 Food & Drug Administration petition on anti-siphon shunt devices that led to the 1999 FDA STAMP Conference in Bethesda, Maryland. In the interim two year period that FDA reviewed my petition, I researched and designed my DiaCeph mHealth Test shunt monitoring system, and was bestowed the title of “scientist” for my efforts without attending school again for a masters or PhD degree.
As for my medical patient experiences, along with 12 surgeries and hundreds of shunt malfunctions, accidental reprogramming of my shunts, and numerous embarrassing and personal challenges, I’ve also undergone about 70 brain scans, half or more of those being CT scans with the associated radiation exposure. I’ve also underwent 4 or 5 procedures where foreign substances (dye & radio-tracers) were injected into my shunt system that can lead to infection and CNS complications.
Unfortunately, I could never get the requisite funding or support for my DiaCeph Test and DiaCeph Inc. startup, which would have enabled early reporting and sharing of data on shunt devices. My company plans were to also pursue “brain apps” which I had been researching, and minimally available on PDAs at that time. Without availability of my DiaCeph Test, it took some of the best neurosurgeons 16 years (2008) and 6 revisions to get the swelling on my brain returned to normal. In 1998, I shared my DiaCeph Test to Dr. Eldon Foltz, chair of the Dept. of Neurosurgery at the University of California at Irvine. From 1998 on, I used the DiaCeph Test’spaper forms & instructions for pre & post surgical diagnostics and status assessment. Since 2009, I have been providing shunt monitoring consults to patients and families around the world. Today also health and safety failures with CNS shunts continues to be a considerable problem.
The state of living with hydrocephalus also suffers from poor advocacy, where discrimination of affected individuals is also common – as the photo on my shirt below intimates. The photo below with long hair was taken in 1973-74 when I was enrolled in the Pre-Med curriculum at the University of Cincinnati as I had planned to be a doctor. But the oppressive political times led me to lose confidence in the system change plans. Then in 1975, I switched my major to Nuclear Medicine Technology to graduate sooner and take more control over my life & career.
My primary health issue today surrounds a yet to be diagnosed autoimmune disorder and chronic meningitis. It may have been “triggered” by numerous invasive procedures and stresses of my shunt revisions. Or it may be a worsening of a childhood disorder tentatively diagnosed as a peripheral neuropathy in 1980. (SEE childhood images below). Without good health insurance, solving this riddle has been elusive. Since 2009, my complaints have worsened and become more systemic without any diagnosis or effective treatment or pain management. My present insurance is a United Healthcare managed care plan, and they have put up barriers to care, causing me to file (4) “grievances” between 2012-2015, and I have also put my privacy at risk in this case study.
Feb. 7, 2017 UPDATE:
In this most recent update, I share a new Rx order for a more detailed CSF (cerebrospinal fluid) lab test. I was given this order in early Dec. 2016, but am yet to undergo the labs due to uncertainty over discontinuing Adaptogens and Nootropics supplements which have brought some relief in my complaints in recent months. In late 2015, I authored this Blog on Nootropics from my research. My initial goal was to replicate the cognitive benefits I experienced in 2015 from the Exelon Patch drug. And secondly, to see whether Adaptogen herbs might bring relief to my pain and fatigue. And both did to some degree.
My recent improvement in late Dec. 2016 led to raising the pressure setting on my Certas hydrocephalus shunt valve – from a setting of “3” to “4.” This change is important as my shunt setting had earlier been down to “2” for 3-4 years due to low intracranial pressure (ICP) from the dura (brain) inflammation. I am yet to update my Nootropics blog with my latest findings, but I expect to over the next month. Below, are three images of my current supplements. The 2nd image also denotes via text: Modafinil, Prednisone, and Synthroid – which are drugs that produce “systemic” changes in the body. More recently, I’ve also added Alpha GPC to my daily Nootropics.
As much as the above supplements provided some relief in my complaints, I am uncertain which ones provided the benefit. I have also just learned that several of the Adaptogens, specifically Panax Ginseng and Ashwaghanda, also boost immune function, and this in turn diminishes the effect of my Prednisone. I could not get a definitive answer on Maca Root. I had noticed intermittent relief & worsening pain over the last 3 months. This new information by Natural Medicines then explains it. And I need to learn which of the above supplements I need to discontinue prior to this next round of CSF labs, and for how many weeks. And after this test, I need to decide what combination of Prednisone and supplements would be best. Should there be a definitive diagnosis, that will be very helpful.
Below, is the order slip for this next round of CSF labs. As I stated, it is unclear which supplements & prescription drugs I should be off, and for how long (Q1). This likely includes Prednisone, Panax Ginseng, and Ashwaghanda, and perhaps others. I have delayed this test due to these outstanding questions, and in transitioning off, and back on, these supplements. Perhaps I shouldn’t even be on them? I’d also like to know if there are additional CSF tests to add to this Rx list (Q2)? A CSF sample can be readily accessed thru my shunt reservoir under my scalp with relatively low risk.
This concludes my Feb. 7, 2017 status update. I am encouraged. The biggest abnormality in my CSF cell count (2015) is a low WBC count (lymphocytopenia). My protein level was also elevated. And I have had an elevated blood absolute eosinophils count and low “RBC” levels for much of the last 5 years. But my Oct. 2016 blood labs were in the normal range – after 10-12 months of supplements. I have also obtained and reviewed new autoimmune studies relating to dura inflammation and CSF testing which are applicable to my case history. Earlier in 2016, both my muscle biopsy & genetic tests (UCLA) were negative.
The history of my current neuromuscular complaints (beyond my earlier controlled peripheral neuropathy) arose in 2009 with hematuria (myoglobinuria) and subsequent kidney failure following a 4-hour drumming event, initially diagnosed as rhabdomyolisis. At that time, I had little neuromuscular cramping or pain other than in my back and lower legs that were well controlled with exercise. After this 2009 hospitalization, my cramping and extremity pain turned and global fatigue and affected the use of my hands and physical activities, with episodes of myoglobinuria and cramping occurring at lower thresholds of activity.
In late 2011 I was diagnosed with Hashimoto’s thyroiditis, thought secondary to an autoimmune disorder. And since 2012, my complaints have escalated to considerable global pain and cramping, fatigue, cranial nerve palsies, low intracranial pressure (ICP), and cognitive challenges beyond that of hydrocephalus. In late 2015, the dura inflammation was diagnosed as pachymeningitis (UCLA) esp after my positive response to Prednisone (SEE MRI below where ventricles collapsed after Prednisone). In my Oct. 13, 2016 update, I added photos and discussion regarding my childhood health issue, where drooping on the left side of my face/mouth can be seen as early as age 11.
I take a low dose Prednisone (2.5mg ea other day) that slightly helps with pain and cramping. Due to effect of Prednisone on my ventricle size (hydrocephalus), this has to be closely monitored with my DiaCeph Test & MRI brain scans, with adjustments in the pressure setting of my programmable Certas shunt, which has also been recalled and not yet revised. I need a mHealth app to sort this all out.
In January 2016, I hospitalized for a sepsis infection felt due to Methotrexate and Azithioprine I had been on for a few months. It did resolve much of the dura inflammation on MRI brain scan with Gadolinium, lending support to the pachymeningitis diagnosis. And in May 2016, I underwent a muscle biopsy with consideration of a mitochondrial disorder. However, the muscle biopsy was negative. There was some question if I was off Prednisone long enough.
In Oct. 2016, a brain tissue biopsy was proposed. But my neurosurgeon has advised against it. In my research, I focused on my abnormal CSF cell count, particularly my very low lymphocyte count seen in the image below. My other WBC counts are moderately elevated. Many CNS disorders today are identified in CSF counts. Please comment at bottom if you have familiarity with disorders that might cause this type of CSF count.
Here’s what I need as of Feb. 7, 2017:
In Aug. 2016 I was referred to an immunologist at UCI Medical Center. But my United Healthcare plan denied it, instead referring me a rheumatologist with Great Newport Physicians, who ordered a brain tissue biopsy and this new CSF lab tests. At this time I need: a) A list of medications & supplements to be OFF, and for how long for the CSF lab test. b) Recommendations of any additional tests that might help identify my disorder.
I would like access to medications like the Exelon Patch (memory drug) & pain medications that support quality of life. Trash-men, freeway workers, and government union workers can get these medications. Denying these medications to others in need is a form of inequality & discrimination.
I would like scientists and FDA to convene & expedite development of new safer CNS shunts, an ICP sensor and/or mobile app like my DiaCeph Test to monitor 24/7 CNS shunt function in hydrocephalus, and put an end to health and safety dis-information with CNS shunt technology.
I would like NIH to convene scientists and address the epidemic of PTSD (post traumatic stress disorder) and SPD (sensory processing disorder) – and make recommendations for testing, treatment, and accommodations in public places, and help mitigate the practice of loud audio media (TV/radio) in commercials – that affects 10-20 percent of Americans.
Exelon Patch memory drug by Novartis
Use of the Exelon Memory Patch really is an accessibility issue in the presence of neurological disorder or brain injury. I doubt any health plan would deny an accommodating aid to a blind person or individual confined to a wheelchair. But, brain disability, it has no voice!
As for my United Healthcare health plan, between 2012 and 2014, I had to file five (5) appeals & grievances in order to receive treatment, that led to unnecessary delays. I have also suffered a number of medical errors, the most significant recent one was misdiagnosis of dura inflammation on my Feb. 2012 MRI brain scan with gadolinium. The inflammation wasn’t discovered until February 2015. Then it took another six months for Prednisone to surprisingly collapse my ventricles. And then a ton of research and advocacy on my part for my UCLA neurologist to make the diagnosis of pachy meningitis. And it is only a partial diagnosis.
Pachy meningitis is inflammation of the brain usually secondary to another disorder, which, in most cases, is an autoimmune or neuromuscular disorder. It was my innovative mHealth efforts after the collapse of my ventricles (hydrocephalus, treated w/ CNS shunt) in June 2015 while on Prednisone, that led to the pachymeningitis diagnosis. I am hoping my case study blog can also become a teaching experience on mHealth.
March 21, 2016 Status Update
Currently, I am awaiting scheduling of a muscle biopsy for evaluation of myositis and mitochondrial disorder. However, it is being complicated by delays by my United Healthcare HMO plan who is issuing the authorization. This likely would have been done back in 2012. I am taking a low dose of Prednisone which helps with cramping and pain. But, I will have to be off this for 4-6 weeks before the muscle biopsy.
It was on Dec. 28, 2015, that I learned dura inflammation was present back on my Feb. 2012 brain scan – but was missed by the radiologist. It was serendipity and my innovative MRI mHealth method of brain scan images I exported to my Nook tablet, that helped make these discoveries possible.
My MRI/CT mHealth Method: Since 1999, I’ve gotten CDs of my CT/MRI brain scans. Prior to that, I obtained copies on film and would photograph them. As of 2016, I’d undergone about 60-70 brain scans, along with 12 brain shunt surgeries. It was about 2002 that I created this mHealth display method to feature my own brain scans in my Shunt Selection Study on my web site for hydrocephalus. This method allows for review of 1000s of CT & MRI images by placing critical images in a chronoligcal sequence for review. Use of these displays would also reduce interpretation medical errors.
I first create folders on my PC for each interested CT or MRI series. Then I export the images as JPEGs into the respective folders using the media software program included in the radiology CD disc. Next, I review, select, and label the relevant images and copy them into another folder, where they can be arranged in chronological series and be viewed side by side. This format makes interpretation more scientific, and minimizes the possibility of human (visual) error from misinterpretation.
This method is particularly important in hydrocephalus care – where it is common to have dozens of studies and 1000s of images to be reviewed. This mHealth display method benefit radiologists, neurologists, and neurosurgeons involved in hydrocephalus care. This method also allows for more detailed evaluation of shunt settings, shunt performance, and shunt malfunction. I have also put these mHealth advances to good use in my hydrocephalus consults and shunt monitoring services linked below:
Once I have assembled the critical MRI/CT Images Folders, I can easily sync and copy the folders onto my phone and tablet. Then when I see my neurosurgeon or neurologist, I’ve got all of my brain images neatly organized for review and discussion.
It was during my Dec. 28, 2015 visits to discuss my post Methotrexate & Prednisone MRIs, that each (serendipitiously) observed pachy meningitis was present on two Feb. 2012 MRI images w/ Gadolinium I had in the display. I included them when I published this blog in April 2015, but didn’t think the images were comparible as they were from different series. These specialists see these studies every day and picked up on the abnormalities right away. I’m just the mHealth inventor! But I regularly get asked to demo these displays.
I’ve really been deteriorating since 2012, haven’t been able to keep up with drumming and other responsibilities because of widespread cramping, pain, and fatigue. On many days, I did not get out of bed until 11 a.m. or noon, and other days I’d return to bed by early afternoon. I wasn’t able to share this for fear of losing the little work I was doing.
My neuromuscular challenges are in addition to challenges I’ve faced with my CNS shunts, where manufacturers were aware of safety issues, but failed tonotify FDA. I know this because I became a patient advocate in 1995 and keep abreast of shunt issues. Failing to report shunt safety issues has been the rule, which I discuss later in this blog.
Currently I am awaiting scheduling of a muscle biopsy for the progression of complaints that seem related to a neuro-muscular disorder for which a biopsy was done in 1980. I also seek answers in these Healing Arts (blog) and Alternative Medicine (blog). UCLA Medical Center has two healing arts centers: The Norman Cousins Center for PsychoNeuroImmunology and the Mindful Awareness Research Center.
My 1992 Auto Accident – Diagnosis of Hydrocephalus
The MRI brain scan below was taken one month post trauma and reveals very large ventricles suggestive of longstanding ventriculomegaly – which likely worsened with the accident and concussion. It’s speculated that I may have had a very small subdural bleed on my right side causing further ventricular enlargement because my right ear drum was “red” on exam one day following the accident. No brain scan was performed. It wasn’t until 4 weeks later, when I developed severe headaches and marked confusion (didn’t know what side of the street to drive on), that a brain scan was done (1992 below). This accident was caused by a 17 year who ran a red light, prior to mobile phones. I was returning home from volunteer duties at the 1992 Great American Raceawards banquet, where I had been on a chamber arts committee to raise money for Costa Mesa arts. As they say, “No good deed goes unpunished!”
Earlier in 1980, I had been diagnosed with an unspecified neuromuscular disorderthat had been causing me considerable pain and weakness in my legs and back, that I had been battling since my early teens. With a poor prognosis not offering much hope, I delved into the healing arts which proved to provide a great deal of relief. It even led to skills as a medical intuitive, corroborated in my clinical imaging work. This Healing Arts Blogdocuments these unusual 1981 healing experiences. I had a remarkable remission of this neuro-muscular disorder and managed it quite well until about 2009, when I began to develop unexplained hematuria/kidney failure with urine pictured below when I undertook rigorous exercise and hand drumming.
By 2012 these bouts had significantly worsened and were occuring at lesser levels of exercise and drumming. I would load up (hydrate) with water and Gatorade before, during, and after drumming and physical activities. But as you can see in the photo, sometimes I couldn’t overcome the effects of this disorder with hydration. On two occassions, I was hospitalized. On perhaps 12 or 15 others, I self treated at home with fluids, urine measurements, and photos like you see above for my records. Today, these complaints are thought connected to my pachy meningitis and Hashimoto’s thyroiditis via an anto-immune or metabolic disorder.
Dura Enhancement = Pachy Meningitis
In February 2015, a CSF culture was done and revealed marked abnormalities in WBCs suggestive of inflammation, but not for infection (SEE JPEG report further below).My neurosurgeon felt it represented chronic shunt overdrainage and intracranial hypotension. But neither my clinical history, nor above-sized ventricles on my brain scans, coincided with chronic overdrainage as reported in the medical literature.
My case study then seemingly began to surround these findings of diffuse dura enhancement – suggestive of either chronic non-infectious meningitis or chronic overdrainage syndrome. I began to do considerable online research to explain the dura inflammation and increasing pain, cramping, and fatigue.
Then in June 2015, a one month planned trial of Prednisone serendipitously helped to shape an explanation for the dura inflammation. This 13-day trial (10mg/day week 1; 5mg/day week 2), led to my ventricles draining out with my Certas CNS shunt valve set at “2,” where it had been for the past 3 years. The “2” setting is the 2nd lowest of 7 settings. I immediately discontinued the Prednisone, and my Certas valve was raised up to “3,” where previously it had caused me headaches and cognitive difficulty. Since about 2012, my ICP had also become lower. In Feb. 2015, it was measured to be “1” cm H2O.
In October 2015, the dura inflammation was formally diagnosed as pachy meningitis. Methotrexate and Azithioprine were then separately given, but led to a hospital admission in January 2016 of sepsis and atrial fib associated with my kidneys. This led to an order for a muscle biopsy, and I was instructed to stay off Prednisone and similar drugs until after the biopsy. However, my only substantive relief so far has been Prednisone. And I went back on a low dose in the interim until the biopsy is scheduled.
Where’s the mHealth?
On February 12, 2016 – my health plan added to the confusion when they issued an authorization for my muscle biopsy with a 14 day window. But I have to be off Prednisone for 4-6 weeks. And I’m concerned about the recovery time from a deep cut into my right thigh while having balance difficulties and muscle cramping. Where’s the mHealth? Here’s one on my blogs on Design & Best Use of mHealth Apps.
In light of my considerable efforts since 1992, many have suggested I write a book. More recently, others suggested I become a TED Speaker. I’ve also been very innovative with drums and rhythms for health and brain enhancement. In fact, it was drumming that helped me overcome many of my challenges with hydrocephalus.
Since about 1998, I have been providing global online information on hydrocephalus and CNS shunt devices, initially as an FDA patient advocate, then as an mHealth inventer turned medical device consultant. In 1997, I designed & patented an mHealth app for hydrocephalus, the DiaCeph Test, that would run on a PDA. But I could never get funding or get past costly FDA regulatory hurdles to bring it to market. Prior to my 1992 auto accident, I spent 17 years as a nuclear medicine technologist where I owned my own company, Certified Nuclear Imaging, from 1982 to 1992. I had also provided instrument feasibility and regulatory affairs consulting.
Feb. 13, 2016 UPDATE
This update includes an Oct. 2015 diagnosis of pachy meningitis by my neurologist based on diffuse dura inflammation in my Feb. 2015 MRI with Gadolinium, my dramatic response to prednisone in June 2015, my CSF culture, and cranial nerve palsies.
My progress in global pain, cramping, fatigue, and cranial nerve palsies continued into October 2015. In November, my neurologist suggested I take methotrexate. Prednisone was doubled to 5 mg 3x per week. I soon suspected I has having intracranial hypertension per increasing headache. This was reported with methotrexate in the literature.
A repeat brain scan with Gadolinium was done Dec. 23, 2015 and revealed the dura inflammationto be improved and only remaining in spots. But there was evidence of increased ventriculomegaly beyond my Feb. 2015 baseline brain scan. The increase was thought possibly due to methotrexate and Certas valveat the higher “3” setting since June 2015. I was somehow tolerating the larger ventricles perhaps due to the immune suppressent meds. There was also quite a dramatic difference in ventricle size between the Dec. 2015 and June 2015 scans.
In further review of my brain scans on Dec. 28, 2015, dura inflammation can be seen on an earlier Feb. 2012 MRI with gadolinium, but was never reported. At that time, my only confirmed test results for an autoimmune disorder were for Hashimotos Thyroiditis. There had also not been any detailed CSF culture. Knowing of the dura inflammation then would have dramatically altered the course of my testing and treatment.
With evidence of new ventriculomegaly in my above Dec. 23, 2015 scan, methotrexate was discontinued and I was placed on azithioprine (50/100/150 mg). But in week 3, I began to experience chills and night sweats and presented myself to the emergency room, where it was discovered I had a sepsis coming from my kidneys. I spent two days in the hospital where my immuno suppressant drugs were discontinued. In follow up visits, my neurologist discussed the possibility of a mitochondrial disorder, and that it too would produce a dramatic CNS response with prednisone. So a muscle biopsy was proposed and is now being scheduled.
I frustrated and concerned with the number of mistakes in my care. I am told I need to be off all immuno suppresant drugs (i.e. prednisone) for at least 4-6 weeks before the muscle biopsy. But with so much pain and fatigue, I went back on low dose prednisone until a firm muscle biopsy date is set. I would also like to explore relief thru alternative medicine as I had excellent result in past years. I’ve written these blogs on Complimentary Medicine & Addiction and Nootropic Vitamins for the Brain.
Sept. 9, 2015 UPDATE
Without support from a rheumatologist or my neurosurgeon, I contacted a neurologist in India who published a paper on chronic overdrainage syndrome, and a neurologist in Philadelphia who authored a paper on chronic meningitis. Neither would comment.<
The medical literature on dura inflammation and chronic meningitis recommended oral corticosteroids, which included prednisone. I spoke again to the prednisone manufacturer who reiterated my dramatic response to prednisone was likely an anti-inflammatory mechanism. With that in hand, I discussed with my internist about trying a low dose of prednisone in an effort to try and manage my pain and fatigue levels. We agreed on 2.5 mg every other day and I started on it on Aug. 7th, 2015.
After 6 weeks on this regimen, I saw a 10-25% reduction in muscle pain & fatigue, cognitive challenges, and cranial nerve palsies (esp. swallowing difficulties). My Certas valve remained at a setting of 3, where 6 months earlier it produced cognitive difficulty. With the prednisone, I overall appeared to be doing better. One of my best gauges for optimal shunt setting is how I feel the instant I awake in the a.m.. I also factor in my daytime cognitive and productivity levels, which after 6 weeks on prednisone, were improving. I kept some notes of this in my phone.
Discussion of Dura Enhancement in my Feb. 18, 2015 Brain Scan
Dura enhancement was identified in my Feb. 18, 2015 MRI w/ contrast study. It can represent infection, inflammation, CSF leak or shunt overdrainage, malignancy, or meningitis. And meningitis covers a broad spectrum of disorders, from infectious meningitis, to non infectious or aseptic meningitis, that includes Lyme disease and autoimmune disorders. Further below, I include links to web sites of medical documentation on this.
Shunt infection was ruled out in February 2015 via CSF culture. As I have a CNS shunt for hydrocephalus, dura enhancement can also represent shunt overdrainage or intracranial hypotension (ICH). But in these cases (referenced further below), the ventricles become “collapsed.” By contrast, my ventricles have been above normal size since 2011, except for the 13-day prednisone trial and collapse of my ventricles in June 2015 – which was after the dura inflammation was discovered. The June 2015 MRI finding would indicate either an inflammatory process or non-infectious or chronic meningitis. Chronic meningitis could also cause my ICP to become low. In Feb. 2015, it was determined to be “1 cm” or 10 mm. My Certas valve has been at the “2” setting since March 2013, while my ventricles have been gradually enlarging. There is no evidence of shunt obstruction.
A number of non-infectious or aseptic menigitis disorders can cause low ICP and dura inflammation. I have also undergone 12 revisions, and in Feb. 2012 developed an abdominal rash or fungal infection following endoscopy for that complete revision. My February 2015 CSF culture also reveals an abnormal WBC count. SEE these slides below.
A one month trial of Prednisone was initiated on June 11, 2015, for pain management and stopped early due to headache and abnormal MRI: 10mg/day week 1; 5mg /day week. In terms of pain reduction, prednisone provided a lot of relief. But, I developed low pressure headaches on day 13, and an urgent MRI brain scan revealed that my ventricles had drained out and nearly collapsed. While trying to ascertain this dramatic effect on my CNS system, I spoke to the manufacturer twice, discussed it with physicians, and undertook a considerable amount of online research.
It does not appear that Prednisone measurably alters CSF production or clearance to the degree to collapse my ventricles in 13 days. The more plausable explanation is that prednisone is an excellent anti-inflammatory agent, and my inflammed dura was a ripe target. This vastly improved my CSF clearance which resulted in my ventricles draining out with my Certas valve set at “2.” An alternate theory is that a metabolic disorder is causing the dura inflammation with a similar response to the Prednisone. Now I’m faced with the challenge of selecting the right setting for my Certas valve, not knowing how long, or significant, the effects of the Prednisone might last. My Certas valve was raised from a setting of “2” up to “3” for now. Additional information on Prednisone can be found below.
July 9, 2015 UPDATE:
The decrease in the size of my ventricles on my 6.24.15 MRI brain after just 13 days of Prednisone (10 mg first 7 days, 5 mg next 6 days) was dramatic. What is unclear, however, are the factors which contributed to this dramatic reduction, and the identification of a possible systemic inflammatory process. Below, my two MRIs reveal a dramatic change in size after only 13 days of prednisone. SEE more MRI images further below.
Cadista’s labeling states prednisone can raise intracranial pressure (ICP). But would it cause more CSF outflow and reduce the size of my ventricles? After speaking to them twice now, it appears this mechanical action on CSF is minimal. If it were more an issue, I think we’d see more published on this in the hydrocephalus population.
My reduction in ventricular size could have been furthered by an inadvertent change in the setting of my Codman Certas valve. However, I have no cause to think it did. It was learned on June 25, 2015, the day after my MRI, that my Certas valve was at the lowest “1” setting, from a “2” setting on February 26, 2015. The setting was not checked before my June 25th MRI. So, it is possible the inadvertent change occurred in the interim months and contributed to the reduction in ventricular size. But I have no data to suspect it!
I think the more likely explanation is reduction of inflammation in “aseptic meningitis,” that can include fungal infections & auto-immune disorders, and may be related to my Dec. 2011 onset of Hashimoto’s thyroiditis, and more recent cranial nerve complaints. But there are many types of aseptic or chronic meningitis.
The next two links are manufacturer required labeling and warnings information. It is vague as to any effect in raising ICP. Prednisone has been in use since about 1950, and falls under the earlier limited regulatory framework.
There has to be “hundreds” of patients with hydrocephalus who have taken prednisone over the years. Where is this data? This is what mHealth and data sharing can solve.
13 Day Trial/Event with Prednisone: (3) Preventable Failures
I offer the following critique since I have encountered so many failures in my care of the last 23 years. This is about preventable failures.
First, there should be more user information on prednisone with respect to CSF clearance in hydrocephalus. Apparently, it falls under older FDA guidance. Still manufacturers must act responsibly to provide information on the “health science of the times.”
Second, Codman released its Certas valve as MRI-safe. But from its subsequent recall and discovery of 0.6 percent suffering unintended reprogrammaing, it renders the Certas valve as “mislabeled.” And had I known this in 2012, I never would have selected for my Nov. 2012 revision. I would have selected the Miethke Gav valve. The Certas valve also “could” have contributed to the collapse of my ventricles in this Prednisone trial, if the setting were tripped earlier by some unknown magnetic field. In consideration, I would advocate suspect Certas valves be checked both BEFORE and AFTER an MRI – to rule out other interference sources of unintended reprogramming.
Third, Congress, the FDA, and the medical devices industry must act in good faith on the health sciences information of the times and modernize mHealth policy to allow for innovations in technology to help avert adverse prednisone and CNS shunt events. It seems quite clear that my experiences and poor outcomes would have been helped by better innovation, better data sharing, and more responsive FDA oversight.
I shared my user experience with the manufacturer of the prednisone, Prosar Corporation. I believe the addition of new mHealth information would greatly improve the efficacy and safety of this powerful, yet effective drug. The slide below lists some of its common adverse effects.
One additional step that may have been helpful in assessing the anti-inflammatory effects of prednisone, would have been to obtain an MRI with contrast – to compare to the earlier February 2015 MRI with contrast scan. From research and discussions with the manufacturer, I am learning my ventricular reduction was the prednisone retarding action on CNS dura inflammation, rather than any normal mechanical action on CSF. Next, I would like to rule out chronic overdrainage as a cause of my dura inflammation, and pose this Question:
Would there not be a different anti-inflammatory response of prednisone on inflammed dura in rapidly reducing ventricular size on MRI – in aseptic meningitis versus chronic intracranial hypotension or ICH? Wouldn’t there be a distinction? Which one also has more associated cranial nerve palsies? Which syndrome would you expect a more dramatic reduction on MRI? Answering these questions will help determine its etiology! Below, I provide two new studies on Intracranial Hypotension or ICH, and I offer additional studies in the section Medical Reference Studies on Dura Enhancement later in this blog. I do not feel (as my nsg does) that I have ICH. I feel my increasing global pain, muscle spasms, cranial nerve palsies, and low ICP are due to an aseptic meningitis.
I can only speculate on how long the effect of the prednisone will last in retarding CNS inflammation, and in the best setting for my Certas valve. An mHealth or telesensor app for hydrocephalus would be helpful for logging this data. And a more definitive diagnosis would be helpful too. I used my earlier DiaCeph mhealth methods in determining that my ventricles had drained out, as documentation for ordering an urgent MRI.
My Certas valve was raised to “3” to counter any lasting effects of the prednisone. There has been discussion of raising it to “4.” But my experiences at these higher settings have proven to cause ventriculomegaly and cognitive difficulties. My neurosurgeon suggested I could revise my Certas valve to a more stable valve. But, I feel these other questions must be answerred first. I continue to search for answers, for more details on my case study, and complaints. Knowledge should be a good thing!
May 26, 2015 UPDATE
I have enclosed my February 2015 CSF fluid culture report below which reveals changes in my white cell count. These findings might indicate a non-infectious or aseptic meningitis. But there are quite a few aseptic and auto immune disorders matching my CSF culture & dura enhancement results. I’ve undergone 12 shunt revisions. But in my February 2012 complete revision, I developed an odd abdominal rash or possible fungal infection from the endoscopy portion of the abdominal fenestrations. This is seen in the photo below.
Could above Feb. 2012 rash have migrated onto the peritoneal catheter and into my CNS system – causing the dura inflammtion and low ICP?
At this juncture, my neurologist was split between a diagnosis of chronic overdrainage syndromeand aseptic meningitis. But my neurosurgeon it was chronic overdrainage. I felt it is aseptic meningitis. So my primary care doctor has ordered TB and Lyme disease tests, which were negative, and placed me on a trial of prednisone, which caused the CSF to overdrain thru my shunt and nearly collapse my ventricles – indicative of an inflammatory syndrome. Given all of the possibilities, I feel it critical to rule out chronic overdrainage and fungal infection from the prednisone trial results discussed above.
I had been taking the prescription medication patch Exelon for nearly 8 weeks, and showed obvious improvement in cognitive function. But my health plan does not cover off-label use. Exelon was FDA approved only for memory problems related to Alzheimers Disease and Parkinsons Disease. So it’s use in hydrocephalus is “off-label.” Today 20% of all prescriptions are off-label. Below, is a photo of my last Exelon patch, which I think exemplifies our country’s senseless rationing of medicine and innovation.
April 20, 2015 UPDATE
Exome Sequence (genetic) testing came back negative for neuromuscular disorder. But the results did not include incidental findings – and might possibly miss a related disorder if their keywords are not inclusive enough. The focus has shifted back to rheumatology and the significance of the “dura enhancement” on my Feb. 18, 2015 scan below, where I’ve learned it can represent several types of aseptic or chronic meningitis.
My Feb. 23, 2015, CSF culture also identified several abnormal WBC levels that may coincide with dura inflammation. I obtained the full report by going online at the new mHealth platform of Quest Diagnostics, but was only able to obtain my most recent lab report without having to pay a $9 fee for earlier reports.
My muscle cramping and fatigue complaints had been reported to my primary care doctor since 2009. And in 2015 I still have no answers. Clearly, new mHealth apps and changes in FDA regulations are needed in further today’s diagnostics and treatments. Below, I share more details on my experiences as a patient, patient advocate, and mHealth inventor.
Since 1992, I’ve undergone 12 brain shunt revisions and numerous shunt malfunctions for hydrocephalus (1992 auto accident). That had been my primary health challenge until about 2012, when my shunt failed again, where I really felt fatigued and out of sorts, and was also diagnosed with Hashimoto’s thyroiditis. During that time, I began returning to bed in the middle of the day. My neuromuscular complaints of 35 years had been mild and managed well until 2011. And by Jan. 2012, I began to deteriorate and suffer more debilitating cramping, stiffness, and muscle pain, and bouts of hematuria, all of which then began occurring at lower thresholds of physical activity.
As Salvatore Iaconesidid in 2011, I put my case study online hoping for an open source medical cure. I prepared my brain scan images and case information as I have so often in my hydrocephalus consults(I provide global information on hydrocephalus). Prior to my 1992 injury, I spent 17 years as a nuclear medicine technologist, 10 of those years with my own company. Below, I also share details of my patient advocacyand public policy efforts, and my 17 year struggle to bring mHealth solutionsto the care and treatment of hydrocephalus. I also put on drumming and drum circleevents. I feel the availability of mHealth applications, such as my earlier DiaCeph Test for Hydrocephalus, would make a significant contribution to medical care and outcomes. Below, are my February 2015 brain scan images.
My Feb. 2015 MRI brain scan with contrast identifies “increased dura enhancement” diffusely spread over my brain and ventricular capsule. Dura enhancement can be caused by infection, inflammation, shunt overdrainage or CSF leak, aseptic meningitis, or auto immune disorder. In the past month, I’ve been undergoing further testing to try and determine the cause. A CSF culture was done to rule out infection, though it showed an abnormal white cell count. I presented myself to the emergency room hoping for new testing, and for radiology to review the above MRI scan and amend their report with additional findings. The dura enhancement MRI finding stands as “indeterminate.”
In my present case study, I seek expert input from neurologists, neurosurgeons, and neuro-radiologists that may lead to a diagnosis and treatment of my complaints. I was inspired by the story of the Italian artist and TEDx speaker, Salvatore Iaconesi, who put his medical case online, and it led to an open source cureof his cancer!
Experiences with the Codman Certas CNS Shunt Valve
My Nov. 2012 shunt revision to the Codman Certas valvewas eventually optimized when the valve was set at 2, where it took 6 months of trial and error at different settings. My 2012 brain image above with still large ventricles was one month after surgery. My ventricular size and complaint reduction was achieved in part through monitoring with my DiaCeph Test paper forms and charts, and in email conversations and office visits with my neurosurgeon. This process would be much easier and more reliable (and cost effective) if there were an mHealth mobile phone or text app. It could be used worldwide.
History of Neuromuscular Disorder
On Oct. 13, 2016 I added the above 4-image childhood photo display showing drooping of the left side of my mouth, and perhaps left eye by age 16. My mouth drooping to the left has been pointed out repeated in recent years. So I sorted thru childhood photos to document when this began. According to the above photos, it was a “gradual onset” of facial palsy between ages 8-12. During those years, I was knocked unconscious for 5-10 minutes, suffered 2 different mouse bites, and a minor neck injury from sled-riding into a tree that I recall. I recall slowly developing physical limitations where I went from being the fastest and one of the toughest kids my age, to having a lot of difficulty running and playing sports.
At age 16, I suffered fainting episodes and was found to be very anemic, had onset of IBF (irritable bowel), and onset of sciatica in both legs. Visits to my family doctor during those years were unproductive. At age 20, I was advised to undergo reconstruction surgery of both knees by Dr. Noise, who was the Cincinnati Bengals head orthopedic surgeon and head of the Cincinnati General Hospital knee clinic. I never got the surgery. And later in California in 1980 at age 25, I was informed I had a peripheral neuropathy – per results of a muscle & nerve biopsy, and advised to get a desk job and discontinue sports.
In 1980, my neuromuscular complaints were primarily confined to my back and lower legs, which I learned to manage with exercise, nutrition, healing arts, and meditation, despite a bleak picture from my neurologist at that time. It is a long story, but eventually my personal health practices allowed me to overcome this ailment, and in 1981 led to overcoming most all of the disabling complaints and new healing and medical intuitive abilities detailed in this healing blog. For the next 11 years, I continued my health regimens up until my 1992 accident and onset of hydrocephalus. And after a couple years, was able to re-establish some level of routine to keep these complaints under control. In the photo below, I am age 34 and playing in a coach’s softball game with my son’s little league baseball. As you can see, I had become quite fit and muscularly developed despite the earlier 1981 diagnose – a surprise to all of my doctors. However, I faced continued episodes of IBF, anemia, and occasional bouts of (bilateral) sciatica.
In 1996, I learned some of my back pain was due to misaligned cranial faults per a very astute chiropractor. It was usually my left parietal cranial fault causing the back pain. In the years that followed, I learned to diagnose and adjust my cranial faults myself. In late 2012, cranial testing showed my entire head abnormal! I learned in 2015 I had pachymeningitis. To this day (Oct. 2016), it seems my global pain and cramping are related to my head, as I seem to get a little relief after adjusting my cranial bones.
It is unclear whether my present neuromuscular complaintsare due to this earlier neuropathy, or to a new disorder. But it would seem related to neuromuscular complaints that date back to childhood. The global cramping, pain, and stiffness has worsened to the point that it compromises my daily activities. And cramping and post exercise hematuria now occurs at a lower threshold of exercise than 3-5 years ago. Since 2009, on at least two occasions, I have gone into kidney failure. And, on 15 or so other ocassions, I developed hematuria after hand drumming and treated myself at home with forced hydration.
Rhabdomyolysis vs. Metabolic vs. AutoImmune Disorder
I was initially diagnosed as suffering from rhabdomyolysis following 3-4 hours of heavy hand drumming on a hot evening that led to 25% renal function and hospitalization in Sept. 2009. I’ve had to scale back my drumming and other physicial activities since. And the cramping, pain, and stiffneess has become more problematic, that I simply am not able to do the level of physical activities I had done for many years. I also have new vestibular complaints thought due to right middle ear dysfunction, which can be auto-immune or cranial nerve. I feel this is related to the dura enhancement, hydrocephalus, and aseptic meningitis. The WBC findings in my Feb. 23, 2015, CSF culture would seem to support this as well.
Below is a published study on rust colored urine and hematuria following prolonged periods of hand drumming. However, this is reported during drumming over a period of many hours and days. Here’s the link:
Clin J Am Soc Nephrol 3: 1022–1027, 2008 doi: 10.2215/CJN.04491007
As I have been helping others around the world with specialized information on hydrocephalus and CNS shunts, I am hopeful there is a scientist or physician out there who can explain my medical findings. The Power of the Internet: an open source cure!
Analysis of CT & MRI Brain Images
This Feb. 18, 2015, MRI brain scan image above reveals slightly enlarged ventricles when compared to the Aug. 2014 and Aug. 2013 scans. But, there is no comparison MRI with contrast to compare to the Feb. 2015 “dura enhancement.” MRI with contrast is not normally done in the routine follow-up of hydrocephalus. There is a limited MRI with contrast done on Feb. 12, 2012, during that month’s hospitalization and shunt revision. But the images are T1 images, and the 2015 study is the standard T2 Flair images of the dura. So it’s unclear whether the 2012 study is appropriate for comparison. Regretably, I could not get the radiologist to review, compare, and comment further on these studies. I’ve inserted these 2012 MRI with contrast images below.
My June, 11, 2010, brain scan image below was after revision to the brand new Low Pro Orbis Sigma II valve in Feb. 2010, which apparently had a specification problem. This Low Pro valve then drained my ventricles out in 4 months. And 2 weeks later, my shunt system obstructed and I began vomiting, and was again admitted to the hospital. Having experienced overdrainage, low intracranial pressure (ICP), and tiny ventricles several times before, I know what it feels like. I do not suspect overdrainage as the cause of my current MRI dura enhancement and complaints. But, I’d appreciate your feedback.
Medical Reference Studies on Dura Enhancement
Medical studies report that “increased dura enhancement” is associated with a number of medical sequel, including, low intracranial pressure, infection, aseptic meningitis due to the side effects of certain drugs, and auto immune syndromes and brain metastases.
Below, is a very comprehensive 2007 study of dura enhancement:
Patterns of Contrast Enhancement in the Brain and Meninges
This next study on Medscape offers a concise overview of dura enhancement and its causes, but you must have a Medscape member login. It entifies MRIs of low intracranial pressure, and the (5) criteria typically seen to support the diagnosis:
With respect to infection as a possible cause of my dura enhancement, a CSF culture was obtained and this was ruled out. However, during the shunt tap, my neurosurgeon commented that my ICP was low, about “1” in the supine posture, and lower than in past years. It gave him pause to consider raising the setting on my Certas programmable valve. But in my opposition to this, I shared how my headaches, cognitive complaints, and balance were “worse” when the setting was higher and my ventricles larger. It took quite a bit of trial and error shunt monitoring and trial settings with the Certas valve over 2 and 1/2 years to find that a setting of “2” was most optimal for me. In addition, it is perplexing how my ventricles have become larger in the past 2 years with the same Certas valve setting of “2,” and no evidence of shunt obstruction. This finding would also be present during infection or inflammatory processes. But what?
My Aug. 1, 2013, MRI reveals my smallest ventricles since the Nov. 2012 revision to the Certas valve. I agree there is some extracranial CSF outside the brain, but it also occurred in my 2008 scan when I felt great, and in my 2010 and 2011 scans when the shunts overdrained to tiny ventricles, though I didn’t feel horible as I do now. Unfortunately, we don’t have MRIs with contrast studies from those studies. So there’s no way comparing dura enhancement. But, the Feb. 2012 MRI study is post contrast, and could be used for comparison. But the radiologist did not review it for comparison.
Aug. 2013 is also the smallest ventricles I have had since my 2012 revision, and earlier Miethke Pro Gav valve in 2011 where my ventricles became tiny when the valve was turned down to 1 (similar to the 2010 Orbis Sigma valve image). During instances of overdraining, I usually knew it from my complaints. I was also able to verify it with monitoring from my DiaCeph Test. I did not find evidence of overdrainage with my present Certas valve setting of 2, either by my complaints, or DiaCeph monitoring.
About a year after my Aug. 2013 brain scan, I began to experience increased pressure complaints, and a visit to my neurosurgeon’s office revealed that my Certas valve had lost its setting and changed from 2 up to 3, most likely from a Nov. 2014 MRI brain scan (I did not have the setting checked after this MRI). Even though the valve was set back to 2, my ventricles today are incrementally larger than 2013, and my last scan in Nov. 2014, which I feel suggests an aseptic CSF space syndrome or inflammation. And now the Feb. 23, 2015, CSF culture seems to confirm this. But specifically what syndrome?
My brain scan image below reveals very large ventricles one month after an auto accident and initial diagnosis of hydrocephalus in 1992. I was 37 at the time.
My Global Outreach, Patient Advocacy, and mHealth for Hydrocephalus
As I shared earlier, I’ve been providing online information and support for the disorder, hydrocephalus, since about 1995. In 1996, as an affected user and patient advocate, I petitioned the U.S. Food and Drug Administration on unreported problems with Medtronic and Heyer-Schulte anti-siphon CNS shunts that dated back more than 10 years at that time. The following year, I designed and patented the DiaCeph mHealth monitoring method for monitoring of shunt malfunction in hydrocephalus. For DiaCeph, I created a weighted scoring method of clinical (complaint) markers that were specific to hydrocephalus and shunt performance.
When properly analyzed, DiaCeph data can give an accurate assessment of shunt performance and shunt malfunction. DiaCeph was also created in response to the false negative test findings associated with malpositioned (malfunctioning) Delta valves and anti-siphon devices. But eighteen years later, DiaCeph still remains on the shelf while the treatment of hydrocephalus and the lives of some two million Americans rests with 25 year old technology solutions. FDA and Congress have failed to allow new social networking and mHealth advances to go through, which would allow earlier reporting and intervention on problem medical devices.
My Original DiaCeph Test Markers (Parameters)
The diagnostic difficulties and false negative findings with anti-siphon shunts were also at the center of my 1996 petition to the U.S. Food and Drug Administration (FDA).
I suspected my poor outcome was being caused by my Delta anti-siphon shunt, and I spent more than a year researching and writing the FDA petition, and another year on the DiaCeph mHealth solution – all in an effort to get corrective medical care and proper outcome. But, I was denied this for nearly 5 years.
The unusual shunt malfunctions identified in my petition were termed “functional obstructions” by Dr. Higashi et. al. who published the critical scientific paper on the topic in 1996. Higashi described how it occured with Medtronic and Heyer Schulte anti-siphon shunt systems. I had two Medtronic Delta anti-siphon shunts between 1992 and 1998, and eventually I was able to show my DiaCeph Test that my Delta valve was operating as a higher pressure valve than its specifications stated. I also referenced hidden manufacturer pressure flow charts on the devices.
In the 3-year period it took to author the FDA petition, design the DiaCeph Test, and advocate for the 1999 STAMP Conference, I became thoroughly familiar with anti-siphon shunts, shunt malfunctions and diagnostics, FDA codes & regulations, mHealth technology that didn’t yet exist, and hydrocephalus advocacy – where I had to learn where my efforts were being opposed, and who was behind it. Even the FDA!
Studies indicated anti-siphon shunt problems were affecting about 2 out out of every 5 users. In examining how many of the shunts were sold between the mid-1980s and as late as 2007, I estimated the device failures affected 5,000-10,000 patients per year, or well over 100,000 patients over this period. These oversights and subsequent FDA failures, in my view, then paved the way for more device failures with programmable shunts, and at least two other CNS shunt devices. And there were specific individuals and organizations particularly involved in hiding these failures. My FDA petition (23 pages total) link below is to a PDF file on my web site, and also as a window on Slideshare.net.
Why do I bring these experiences up? Because I feel neither the medical field, nor FDA, or any other group, properly addressed the issues that led to the earlier anti-siphon device failures. It took some 10 years for the FDA’s 1998 Ruling on my anti-siphon devices petition to become accepted science in the field. I believe the same poor QA (quality assurance) and FDA oversight that allowed these anti-siphon device problems to continue, led to problems with programmable shunts, an overall lack of progress with CNS shunts, and new chronic health problems in the hydrocephalus population today.
Hydrocephalus Care in U.S. compromised by Politics
1) Widespread failures with CNS shunts leading to a high incidence of surgical revisions, overuse of CT x-rays, and too many unexplained complications, physicians have come to accept poor outcomes in the treatment of hydrocephalus. As a patient advocate and inventor, I argue the problems are not in the patients, and not really with the shunt valves, rather, shunt valves with problems mfrs cover up! It leads to a lot of unnecessary confusion in care, and political views of poor outcomes rather than medical results; and
2) My managed care plan encourages physicians and facilities to cut and block care, and such practices are accepted as a part of the political practice of medicine. Similarly, in cases of widespread shunt device failures, physicians are discouraged in reporting these to FDA. And I believe if either I worked for the U.S. government, or an organization on the Obamacare exempt list, I would have a better plan and I might have a diagnosis and some treatment by now.
I have not included SS#, DOB, and other priviledged information – as are so often included and breached on medical sites today. I’ve just my health care!
I want readers to understand what I’ve been through in 23 years: 45 CT brain scans (and radiation exposure) and another 20 MRI scans, 12 shunt revisions (many of these surgeries were preventable), and the ill-effects of 75-100 shunt malfunctions.
Still – my story is nothing out of the ordinary. Some patients have had as many as 100 to 200 shunt revisions – and many CT scans, related radiation, and long term health problems due to device failures and poor FDA oversight.
Here are some of my more recent efforts to address problems in the care of hydrocephalus. In 2002, FDA had introduced new Post Market Surveillance for problem medical devices. I wrote to them with the required supporting guidance and asked them to apply this new guidance to CNS shunts. But, FDA denied my request as can be read in their letter below. Since then, there’s been a widespread increase in CNS shunt failures, which I believe is a direct result of FDA’s poor post market surveillance:
Stephen Dolle’s 2002 Request to FDA to include CNS shunts in New Post Market Surveillance
My experiences in living with hydrocephalus, have often left me helpless and feeling more like a “prisoner” than a patient.
All this helped me to put my medical case study online. I also host two (2) case hydrocephalus studies from my global efforts on hydrocephalus. Two high profile neurosurgeons with close ties to the Hydrocephalus Association oddly took issue with my involvement and reports, and refused to read them, all while they routinely allow manufacturer’s representatives in surgery with their patients to advise on CNS shunt implantation. Plus, I take issue with neurosurgeons, who become aware of problems with CNS shunts, but do NOT report to FDA!
I have complained about manufacturers not reporting problems with CNS shunt devices to FDA, and the presence of reps in patient surgeries, then provides additional opportunities to “mislead” user surgeons on issues with their devices.
My involvement, monitoring, and reports, then helps offset any mis-information and confusion by device manufacturers, and provides important diagnostic data on CNS shunt performance and shunt malfunctions. I think the patient and family should decide whether my role is needed. And if so, their physician had better read my reports.
In the first report, I created an algorithm to analyze the patient’s brain scans for signs of brain atrophy vs likely responsiveness to shunting. In the second report, I had the patient fill out paper forms with instructions that provided non invasive data on his condition and shunt performance. An mHealth app, if it were available, would accrue and direct the collection of this data, and help physicians in earlier and more accurate diagnosis, and earlier intervention and better outcomes in care.
Consult Report on Analysis of Brain Atrophy vs Responsiveness to Shunting in NPH
Today, there are no doubt thousands of hydrocephalus case studies similar to mine. It is estimated there are almost 2 million people in the U.S. today with hydrocephalus. And many more around the world. The advent of mHealth apps and social platform solutions would aid shunt monitoring and sharing of data on CNS shunt devices, greatly improving shunt outcomes. I would finish my Creative Brief on the DiaCeph Test App if I felt it might be produced and put into use. Let’s turn this around. Support mHealth!
Poor reporting of problems with CNS shunts has led to an epidemic of poor care and outcomes in hydrocephalus, which has emerged as barriers to care and treatment – as I have shared. My launch and outreach with HydroPowered.org is but one way to combat this. In other instances, I feel we need not to be so tolerant.
In 2001, Fox Sports thought they’d use an ad campaign to exploit hydrocephalus, seemingly involving the Los Angeles Lakers and the Los Angeles Times.
The actor in the ad sported a Laker shirt while having a graphicly and grossly altered large head and caption that read, “It’s a lot to Absorb.” This was a full page ad in the Los Angeles Times.
I telephoned the LA Times, and then Fox Sports, and followed this up with letters. I felt their poor taste reflected a public disconnect with hydrocephalus, and lack of public awareness in poor outcomes. It was a low point for hydrocephalus.
In the months that followed, I shared my correspondence with Emily Fudge, then director of the Hydrocephalus Association. She promised to keep me in the loop. But months later, I realized I was misled and learned there was not going to be any outreach or appologies from Fox Sports. I suspect her organization received some money, however. This is the way it’s been. And this is why people like me need to speak out!
Further below, I am pictured in Washington D.C. for the 1999 STAMP Conference on Hydrocephalus, which I helped to bring about. Somehow, my DiaCeph Testwas left out of the program – and I think that error contributed greatly to DiaCeph never being developed. After all, DiaCeph was conceived in response to false negative findings cited in my FDA petition, which FDA upheld. It is counter-intuitive for FDA not to support a solution to these shunt problems. And it was counter-intuitive not to invite the person to speak on the conference panel (me), who helped bring STAMP about, especially with all of my knowledge about hydrocephalus, my related petition research, innovations in shunt monitoring, and authoring of this important FDA petition.
It was FDA staff, Janine Morris, who I knew from numerous telephone calls concerning my efforts, and her boss, Larry Kessler, who then decided to withhold the FDA’s Sept. 1998 Ruling from the Federal Register – guaranteeing there’d be no news coverage of it – a move most unheard of, unless you’re Medtronic undergoing a major merger and $5B stock issue that month. That merger helped propel Medtronic and Sofamar Danek, and sealed the fate of 2 million Americans with hydrocephalus – assuring we’d face many more years of failed shunt devices.
1999 Article in the Orange County Business Journal
Article Page 2
Today, the treatment of hydrocephalus with CNS shunt devices, regulated by the U.S. Food and Drug Administration, is in shambles. There are other areas too, where FDA oversight is in need of immediate attention and modernization, such as the user information and data on older drugs like Prednisone, and the availability of mHealth devices and social network platforms, all of which will aid in the resolution of problems with drugs and medical device safety.
But unusually high incidence of CNS shunt device failures and related (failed) FDA oversight should draw scrutiny – and be investigated for misconduct. These failures date back to before my 1996 Petition in the FDA’s failure to act on significant problems with CNS anti-siphon shunts.
Since the FDA’s 1998 ruling on my petition and related 1999 STAMP Conference, there has been a significant increase in unreported problems with CNS shunts, many requiring shunt revision. The most notable of these has been with programmable shunts. My current Certas shunt is in this class, and was recalled in 2013 less than a year after it was approved. It is only the second of many shunts with problems to be recalled.
FDA Conference Agenda – 1999 STAMP Conference on CNS Shunts for Hydrocephalus
I found the Hydrocephalus Assocation (now in Washington, D.C.) to be working with shunt manufacturers to avoid taking action on shunt problems, and to be working with FDA to not take any action, and that this relationship existed from 1996 to as late as 2013, and to some degree, still today.
The high incidence of CNS shunt failures led to poor progress in the care and treatment of hydrocephalus, and contributed to new health issues now being discovered from over-use of CT scanners, and new long term effects from an unusually high number of shunt revisions. I had discussed some of this with the renowned field inventor, John Holter, before his death. He and I were 100% in agreement.
No amount of money spent on research can fix these kinds of problems. As a patient and scientist, I am outraged. I’ve felt like a prisoner.
Below, I include information on Salvatore Iaconesi, who earlier placed his medical case online for open source care, and for his efforts and presentation at a TED Global event.
Salvatore Iaconesi’s 2012 TED Global Speech on Open Source Cure for Cancer
And for those of you who enjoy outreach with hydrocephalus, I have a fun site for hydrocephalus at http://www.HydroPowered.org that I hope you find uplifting. One of my main characters and hydrocephalus super-heroes is none other than the Terminator, who comes complete with a self-correcting brain implant.
If you would like me to speak or consult on mHealth applications, innovation and product development in hydrocephalus, or share any of my experiences, please contact me thru DolleCommunications.comor StephenDolle.com.
If you have experience with hydrocephalus or non-infectious (aseptic meningitis), or neuromuscular disorders, I’d appreciate your feedback on my case study. As I share, I have been providing global informaiton on hydrocephalus since about 1995. I prefer science and innovation over politics and the status quo.
I also post my case study here in support of 2015 Brain Awareness Week at http://www.dana.org/BAW
I look forward to hearing from you.
Contact[at] DolleCommunications [dot] com
Tel. (949) 642-4592
This blog discusses the common causes of migraine headache, what you can do on your own to manage it, how to use the Elecont eWeather HD app for advanced warning of changes in barometric pressure that may trigger weather induced migraine headaches in you, and a brief review of the “Migraine Buddy” and “Headache Diary Pro” apps for migraine. As of May 10, 2016, I am able to give away Google Promo codes for FREE Android downloads of the app.
This blog was updated Jan. 11, 2017 with info on:
1. How to select notifications & alerts for changes in barometric pressure related to migraine headache, with screenshots, and
2. My personal preferences for barometric pressure indicators on my eWeather app
Blog updated Oct. 19, 2016 with info on:
1. Screenshots and new instructions on installing the app from Google Promo codes.
2. Discussion and review of several top migraine apps.
3. Discussion and links from new Excedrin migraine and weather information.
4. Updated information on the role that sound/noise and sensory processing disorder (SPD) plays in migraine headache.
Weather changes with a sharp drop in barometric pressure can often trigger a migraine headache in pressure sensitive individuals with a history of neurological disorders such as hydrocephalus, post tumor, Parkinson’s Disease, PTSD, sensory processing disorder or SPD, and person’s with a history of anxiety attacks and migraine. The sharp drop in barometric pressure during weather change often acts as a trigger of migraine. Weather apps and web sites can provide advanced warnings of changes in barometric pressure, so affected individuals can adjust their activities and medications. I’ve found the eWeather HD app to be the most convenient as it forecasts barometric pressure both 24 hours ahead, and the past 24 hours, in a easy to read graphic format. The app highlights steep rising and falling of barometric pressure, and can alert you via its icon on the taskbar of your phone.
I am a migraine sufferer today as a result of 24 years and 12 CNS shunt surgeries for hydrocephalus. In this blog, I discuss a real migraine headache event, and how I used the eWeather HD to help me better through it. Had it not been for the Elecont eWeather app, I likely would have been down for the entire afternoon. And as of May 2016, I am able to give away free Google Promo codes from the eWeather HD app developer, a $4.95 value.
My name is Stephen Dolle and I am a neuroscientist and author of this blog. I write and consult on mHealth, brain health, and the disorder hydrocephalus. I also live with hydrocephalus, and regularly suffer migraines, and have been an eWeather HD app user since 2012.
My mHealth app experience spans a 1997 design of an application for hydrocephalus (DiaCeph Test) to run on a PDA, which unfortunately I was not able to get funding for. However, I continue to provide a number of FREE monitoring forms and instructions so individuals and families can do their own monitoring. Since 2009, I’ve been providing Hydrocephalus Monitoring & Consults to patients affected by hydrocephalus (link to blog & services is below). I am also a CNS shunt device scientist. I can also provide consults to mobile app developers and others wishing to develop mHealth apps. My DiaCeph Test today could be made into a mobile data app with sufficient funding and/or partners.
Since 2012, I’ve also been applying my mHealth expertise to migraine care and weather monitoring of migraine headaches using both weather apps and web sites. I have also evaluated mobile apps for pain management monitoring. Since 2014, I found the eWeather HD app the best mobile app tool for monitoring barometric pressure weather triggers, and in 2016 I reached out to the developer for free downloads to give away to my blog followers. Migraine headaches are also very common in hydrocephalus, which I have been living with since 1992. So these eWeather HD efforts also benefit my own health.
I also put on drum circles in Orange County, California, as a therapy for medical conditions, and for events, icebreakers, and organizations interested in team-building (like drumming in the workplace pictured above). Medical conditions and organizations I’ve helped include: National Hydrocephalus Foundation, National Parkinson’s Foundation, cerebral palsy/autism, drug & alcohol addiction, Alzheimer’s disease, movement disorders, sensory processing disorder (SPD), schizophrenia, weight loss, and general health & wellness. I also write blogs on drumming and movement topics, including, drumming for basketball and football. Drumming can improve one’s intolerance to sound and stress, which are common triggers of migraine headache, and stress also plays a key role in sensitivity to noise in sensory processing disorder (SPD). Drumming, exercises, and yoga also help offset cerebral hypotension, the mechanism most often responsible for migraine headache. My blogs below detail how drumming aids wellness, stress reduction, and migraine disorders.
How to use the eWeather HD App for Management of Migraine Headache
The Elecont eWeather HD app is an excellent mHealth tool & mobile app for managing migraine headache. I have been using the app since about 2012, while also using several online weather sites. As Elecont made updates to its app, by 2014 it became my weather site/app of choice.
With my January 11, 2017 update, I added further information on how to set up alerts & notifications on Android devices for changes in barometric pressure – via the OPTIONS section of the eWeather HD app – please note barometric pressure ALERTS are not yet available for the iTunes version.
For Android devices, you have (3) ALERT options for how you get notified of changes in barometric pressure. Below are the Android screenshots for setting up ALERTS in the eWeather HD program. (For Apple/iTunes devices, you can view changes in pressure via the red-alerted barometric pressure graph in the app, and via display of the pressure graph icon on your phone’s taskbar & widget if set up).
VIEW GRAPHS: View the graphs by clicking on the app or widget on your home screen. The program is configured by default to turn the barometric pressure graph “red”when there is a rise or fall of more than 0.20 Hg (I think). The default graph will look like the graph in the screenshot just further below. This shows the pressure for the last 24hr in Hg. The far right edge of the graph is current time, and the far left edge of the graph represents 24hr earlier. To see the next 24hr forecast, press the tiny round red “in” button in the top right corner of the screen. Press it again, and it returns to the current 24hr graph. Scroll the screen to the “right” to see an hourly all weather forecast, and scroll to the right again to see the 10 day weather forecast. Scroll again and it comes back to the home screen.
VIEW ICON: View the pressure graph “icon” in either the notifications bar on the top of your phone’s screen, or in the lower right corner of Elecont 2×2 widget screen. I have both set up. The icon is a tiny display of the graph. When the pressure is substantially rising or falling, it will turn to red and be sloped accordingly.
AUDIBLE ALERT: You have the option to get an “audible alert” or notification when the change in barometric pressure exceeds a range you select. I personally do not use the audible alerts. I view icon in two places on my screen. And then several times a day I click on the app, where I immediately see the larger pressure graph, and then click on the “in” button in the top right corner to view the next 24 hours forecast.
The eWeather app has many customizable options for notifications, and for setting up your home screen widget with custom hourly weather clock. Select the “status bar notification” option to set up your audible and screen icon notifications. To access the OPTIONS panel, press the “open menu” button on your phone, and scroll down to “options” near the bottom of the list. This is where you will set up the weather and barometric pressure alert information for your task bar & widget. First, select the “Alerts” option near the top of the options panel (not pictured in the screenshot below as it’s a long panel).
Click on the “Alerts” option near the top of the panel, and check the boxes like in the screenshot below.
Next, go to the main OPTIONS panel and select the “Status Bar Notification” in the lower portion of the panel. Select “Pressure Changes” like in the next screen.
Then check the appropriate boxes under “Pressure Changes” and select whether you want to receive an “audible notification” like in the screen below.
You are done with setting up alerts & notifications. For help in setting up the eWeather app widget, refer to “frequently asked questions” section under “About” on the OPTIONS panel.
The eWeather App provides 24-hour advance notice of rapid changes in barometric pressure, which you can use to help manage your migraine headaches. Knowing adverse data in advance, will allow you to make the necessary changes in your schedule, medication, exercise, and hydration to possibly head off a migraine attack. Moderating exercise, hydration, and medication other tips is discussed further in this blog.
eWeather HD App Migraine Headache Case Study
Below, is my own eWeather App case study from a migraine headache episode I suffered in 2015 that forced me to stop working, and lay down it became so severe.
And as I lay there, I clicked on the widget of my Elecont eWeather HD app, where I could see I was in the midst of a very sharp fall in barometric pressure (screen image below). The app showed a “9 pt. drop” in only an hour – which is a very significant drop. It is the “rapid drop” in barometric pressure that is the most common trigger of migraine headache, next to stress.
My next step was to perform a valsalva (breath pressure) maneuver – which I use in my hydrocephalus and migraine care, to test my response to a temporary increasein brain blood pressure(BP) and intracranial pressure(ICP). If you’re experiencing a (hypotension) migraine from rapidly falling barometric pressure, often times valsalva maneuvers and changes in posture (up & down) over a 20 minute period, can provide some relief.
To do a valsalva maneuver, simply hold your breath for a few seconds while straining as though you were lifting something. Then note the change in your headacheduring the maneuver. If it feels relieving, that suggests your headache is due to low pressure or a “cerebral hypotension” brain state. If there is no change, that would suggests either your headache is unrelated to weather pressure, or your pressure is so low that the valsalva did not counter your low pressure enough. If your headache worsenswith this valsalva straining, that would suggests hypertension & elevated BP and/or ICP, and you should discontinue any further straining maneuvers.
With my migraine on that day, I got headache relief almost immediately from the valsalva pressure maneuver, and continued to perform these low pressure offsetting maneuvers. As I’ve used the app for several years, I knew today’s drop in pressure was unusual and steep. The eWeather App also changes the color of the graph to “red” during a steep rise or fall in barometric pressure. I put 2+2 together, and I concluded the sudden drop in pressure was likely the cause of my migraine headache.
I stayed supine for almost an hour, while continuing to perform 2-3 valsalva maneuvers each 10-15 minutes. Within 30-45 minutes, I was feeling like new! I also soon observed the barometric pressure to level off on my app’s display. Below is my screen image:
Weather Web Sites
Weather web sites also offer some barometric pressure information. Prior to the Elecont HD weather app, I primarily used two online weather sites. Weather Underground lists barometric pressure forecast data, but only 6 hours of forecast data the last time I looked.
Two weather web sites I used in the past include Weather UndergroundandWeather For You. For these, you need to put in your zip code or city to view the weather panel for your area. They list a table and graph options for weather data. Weather Underground gives 6 hour forecasts ahead on barometric pressure.
Medical Science behind Migraine Headaches
Migraine headaches are typically due to cerebral hypotension, where blood vessels in the brain become dilated, resulting in low blood pressure in the brain, and then headache. During weather change, a sudden falling of barometric pressure can leave you further vulnerable to cerebral hypotension. And it is the rapidly falling barometric pressure that is often the trigger of a migraine. Menstruation, and its associated blood loss, can also contribute/help trigger cerebral hypotension and migraine.
Knowing the cause of your migraine will help you best treat it. In the case of my migraine on this day, it was the sudden drop in barometric pressure that induced my headache. My quick assessment of its cause, then allowed me to undertake swift intervention.
Valsalva maneuvers and laying down preferably in a dark or quiet room, is a common treatment in migraine. But some may also need medication. You should keep watch on the barometric pressure during a migraine to confirm that it is stabilizing.
Weather related headaches affect some 15% or more of the world’s population. Migraine is also common in the disorder, hydrocephalus. Migraine headaches are also passed on thru family genetics.
Much has been written about the connection between weather and migraine headache. The popular over the counter medicine, Excedrin, combines aspirin or Tylenol with caffeine (a vasoconstrictor) to offset dilated blood vessels (cerebral hypotension) which is the most common scientific explanation for migraine headache. Excedrin helps both with pain and constricting of the dilated blood vessels. For this reason, Excedrin is uniquely helpful in the treatment of weather related migraine. Below, is a web page Excedrin has published on the weather-migraine connection.
The above Smithsonian Magazine article primarily discusses the feasibility of whether the Migraine Buddy app can predict migraine headache. For more on this, SEE my review and comparison of the Migraine Buddy app and Headache Diary Pro and how each can integrate with the eWeather HD app further below.
I have written much about how to use mHealth apps, home treatment, and prevention of medical disorders. And migraine can be better managed by following my tips in this section.
One simple technique is to have a cup of coffee or tea right before onset of a migraine. Caffeine acts to constrict dilated blood vessels in the brain, and can also be used prophylacticly head off an onset of migraine and cerebral hypotension – before a big headache strikes. Similarly, exercises like yoga, which involve frequent changes in posture (eg. standing to lying down), can can help to normalize cerebral hypotension and your brain’s ill-fated response to falling barometric pressure.
Another more pragmatic remedy that helps me is rapid hydration with water (two to four 12 oz. glasses) over a 15-30 minute interval at first onset of symptoms. The water helps raise blood pressure (BP) and infuse fresh blood and nutrients into the brain. Other remedies include changing postures from standing to laying down over 30 sec to 2 minute intervals, and light exercise with short interval BP surges. This helps to flex the tiny blood vessels in the brain most responsible for migraine. Regular exercise also improves your intolerance to cerebral hypotension. PRECAUTION: Should you suffer from high blood pressure or heart disease – you should consult with your doctor before doing these physical exertion exercises.
Once a migraine event has begun, it is recommended you lay down supine for at least 15-20 minutes to raise your brain’s blood pressure and help offset the hypotensive state.
Loud/monotonous sounds, stress, other illness, and poor sleepcan also leave you more susceptible to migraines. Many migraine sufferers also suffer from SPD or “sensory processing disorder,” and become overly sensitive to loud ertatic sounds. It’s important during a migraine, to remove yourself from sources of light, sound, and commotion as best you can, as it helps calm the brain. The following is a detailed blog I’ve authored on sensory processing disorder:
Women during menstruation are also more susceptable to migraine from the slight blood loss causing a hypotensive state. Coupled with a drop in barometric pressure, if you are a woman common to this syndrome, menstruation and barometric pressure drop can send you into a full migraine crisis. To offset this, you should drink extra fluidsduring menstruation.
Migraine sufferers should also limit intake of alcohol, as this can lead to dehydration, and alteration of brain neurotransmitters. Also limit foods with high fat and sugar contentas this compromises healthy circulation in the brain. You will likely see a noticeable difference in frequency and severity of your migraines just by altering your intake of alcohol, fat, and sugars.
To help reduce sensitivityto changes in barometric pressure, regular exercise like yoga can help brain compliance and cerebral blood flow. Breath work and meditation also help improve blood flow in the brain, and your stress response. Drumming is an excellent exercise as it also reduces stress. Weight lifting, sports, walking, and all exercise helps improve blood flow in the brain, that can offset migraines. Below, the Mayo Clinic web site offers some info on migraine.
For many migraine sufferers, weather related triggers pose regular challenges. Here I personally have found the eWeather HP app to be an excellent mHealth tool for alerting you of coming changes in barometric pressure. Managing migraine, and its many different causes, can be a complex health challenge. So you should be discussing the eWeather HP app and other details ith your doctor.
My initial blog on weather monitoring for migraine was in 2014. In that blog, I shared my experiences on the use of weather web sites and the eWeather app. But the eWeather Elecont app has become the best tool for managing weather induced migraine headache.
With the condition hydrocephalus, which I live with, a headache during rising pressurecould also indicate an early sign of shunt malfunction, signal an improperly programmed CNS shunt, or be a sign you’re not yet stable following shunting or ETV. As a significant headache [during high barometric pressure] could indicate “shunt malfunction,” you should take this up with your doctor.
How to obtain a FREE Android eWeather HD Download via Google Promo code
The Google Promo code for the Elecont eWeather HD App is a $4.99 value. Per the developer, no free downloads are available for Apple devices. I strongly encourage you READ my entire blog after downloading the eWeather HD app. To obtain a FREE Google Promo code, follow these instructions:
Download Instructions for Google Promo code for FREE Android download
1. Email me at contact [at] dollecommunications [dot] com – and I will email you back your code usually within a couple hours, but most always within 24 hours. 2. Once you’ve obtained your “Google Promo code,” go to the Google Play store and search for eWeather HD app (or similarly follow the link in my email). I’ve heard mixed feedback as to whether you SHOULD or SHOULD NOT be signed in. 3. Next click and open up the app – and you should see a panel as in STEP1 below. Click on INSTALL. 4. You should now be given the option to buy with a Google Promo code. Do not select BUY if you’re signed in as the $4.99 might be billed to your Google account. You need to be at the REDEEM YOUR CODE panel as seen in STEP2 below. For some users, you may need to sign out of Google Play store in order to see the REDEEM YOUR CODE panel. 5. Next, enter the Google Promo code I emailed you and select REDEEM. Then select ACCEPT. You should immediately see the app installing.
If you wish to directly purchase the eWeather HD app for Android devices at the Android store, follow this link:
If you wish to directly purchase the eWeather HD app for Apple devicesat the Apple/iTunes play store, here is the link – plus SEE the installation screenshots and link to Elecont’s customer support page for Apple installs below:
And here’s the eWeather Apple app screenshot of its barometric pressure graph once the app is installed and operational.
Android Mobile Apps for Home Care of Migraine Headache
This section compares two leading Android mobile “migraine” apps I have used for home care of migraine headache, and can offer my insights. These apps would need to be used in addition to the eWeather HD app as neither provides any monitoring or alerts on changes in barometric pressure. Headache Diary Pro vs Migraine Buddy. I use the “pro” version of Headache Diary, and the “free” and only version of Migraine Buddy. They are nearly identical in application, but differ in their UI panel and usability. Where Headache Diary Pro provides all the necessary monitoring and migraine reports, Migraine Buddy charges a monthly or yearly subscription for their reports. I find the Migraine Buddy a more detailed and user friendly program. But you would need to have a significant migraine problem to spend $9 per month or $90 per year.
My recommendation as to your individual use of the eWeather HD and above apps is based on the severity of your migraine issue as to the degree that it impairs your quality of life. That should determine how much time and money you may want to spend on these.
eWeather HD app: If you are certain that your migraines are often triggered by changes in weather, then this app is a must for you. You may also want to download one of the migraine apps if your condition poses significant to quality of life. The eWeather HD app is not too difficult and time consuming to set up. And it offers many other weather features such as 10-day weather forecasts, live radar, weather alerts, and earthquake alerts, to name a few.
Headache Diary Pro: I have used this app for several years and find it very adequate for recording and storing migraine data to later print out when you see your doctor. It’s fairly simple to use. And I don’t believe there are any other additional costs to use.
Migraine Buddy: The Migraine Buddy is perhaps the newest mHealth design of any of the migraine apps I’ve looked at. I downloaded it today and ran it thru a trial headache event. While I favor its UI interface over the other migraine apps, I am not willing to pay a monthly or year subscription fee to get the results. This is a decision only each of you can make as to how migraine affects your quality of life, and what you are willing to do to possible better manage it.
If money weren’t an issue, I’d likely choose Migraine Buddy. But be forewarned, both the Migraine Buddy and Headache diary Pro (and likely all the other migraine apps) require a significant investment of your time. If you suffer daily headaches from hydrocephalus as I do, one of these two apps can be helpful. But, the more time and thought you give to your headaches, the more they seem to take up space in your mind. This goes the same for pain and pain management too. Below is the Manage My Pain Pro app I have tried and found helpful for pain management, though time consuming.
As I have written about the use of mobile apps for migraine headache, I wanted to also share some more specific applications I’ve written about for persons with hydrocephalus. Two of the most common apps I use (Metal/EMF Detector, Decibel Meter) can be found on the Smart Tools web site. I’ve used these apps for several years and find them helpful in managing hydrocephalus and SPD related complaints. I also now have a special blog of apps and tips for living with hydrocephalusbelow.
Metal Detector – This EMF app is handy for measuring magnetic fields in your surroundings from various electronic devices & household appliances should you have a programmable CNS shunt for hydrocephalus. I personally have used the Smart Tools Metal Detector for 4 years and find it accurate and helpful.
Sound Meter – Decibeter meter apps measure the loudness of sound around you should you be sensitive to sounds as a result of hydrocephalus, autism, and other disorders that often lead to sensory processing disorder, or SPD. I personally use the Smart Tools decibel meter app and find it accurate and helpful.
I hope you’ve enjoyed this blog and found health tips to help in managing your migraines. If I can be of any specific help in mHealth design, use of these apps, hydrocephalus care & monitoring, drum circles for wellness and brain health, or speaking on these topics, please contact me via the information below. Feel free to save my Contact Card.
Stephen Dolle Tel. (949) 642-4592 Email: contact[at]dollecommunications[dot]com
This blog discusses mHealth mobile phone apps and accommodations helpful in living with hydrocephalus. I wrote it initially in 2015 under the title “Spread Awareness of Hydrocephalus on Rare Disease Day.” Then following several large updates of content, on April 18, 2016, I changed the title to “Mobile Apps and Accommodations for Living with Hydrocephalus,” which I feel more aply represents its content now. I discuss many of the everyday challenges faced by persons living with hydrocephalus, and discuss my experiences with specific mHealth mobile appsand accommodations-solutions needed for everyday living.
Hydrocephalus is a neurological disorder where CSF (cerebral spinal fluid) is not sufficiently cleared from within and around the surface of the brain – from a variety of etiologies. The fluid then abnormally collects in the brain’s ventricle compartment thereby exerting abnormal and often dangerous pressures on critical structures of the brain. It is normal to have CSF in the brain, as it is produced in the choroid plexus at a rate of about 20cc per hour. It’s primary purpose is in regulatiion of blood pressure (BP) and intracranial pressure (ICP). It also circulates up & down the spine and helps to circulate needed nutrients throughout the brain. Hydrocephalus then develops when the brain is not able to clear CSF fluid at the same rate it is produced, more often resulting in swelling of the ventricles – except in NPH, or normal pressure hydrocephalus, where there may be limited or no swelling, and normal amounts of pressure.
Hydrocephalus occurs in utero and shortly after birth in 1 of every 1000 births. It also occurs in children from cysts and tumors, and somewhat also in adults. It occurs post trauma through subarachnoid bleeding, and idiopathicly, or naturally, from anatomical malformations of the brain and brain-stem, and from aging. Its overall prevalence in the U.S. is estimated at about 40,000 to 50,000 new cases each year. But due to its broad spectrum of causes or etiologies, hydrocephalus has been accepted into the rare diseases database. Many scientists continue to refer to hydrocephalus as a rare disease because of its association with genetic birth defects. The illustration below identifies where CSF is produced and circulated within the brain.
DolleCommunications is my neurosciences blog I launched in 2010 after becoming affected by hydrocephalus following a 1992 auto accident and concussion. The photo of me below was taken in 1998 after one of the shunt surgeries where I had used my newly developed DiaCeph Test mHealth method to help direct replacement of the needed medical device components on my CNS shunt system.
A CNS (central nervous system) shunt is the most common form of treatment for hydrocephalus. It is a two or three piece catheter with a one-way pressure valve that more often drains into the abdomen, or peritoneum, where it is termed a VP shunt. Alternately, it can drain into the heart (VA shunt), or draw fluid off the spinal canal into the abdomen (LP shunt). Over the last 20 years, a newer surgical procedure, a 3rd ventriculostomy, has been developed where a small opening is made in one of the ventricles (usually the 3rd), which if successful, allows for proper circulation and clearance around a an aqueduct blockage and can negate dependance on a CNS shunt. Only 10-15 percent of those with hydrocephalus will benefit from this procedure.
It is common knowledge today that shunt technology is in need of modernization. Present day treatment outcomes (esp. with CNS shunts) often leave individuals with significant quality of life challenges with no shunt diagnostics to provide early warning shunt malfunction or accidental reprogramming, which is all to common and can result in brain damage and/or blindness. Since my onset in 1992, I’ve undergone 12 shunt revisions.
Living with hydrocephalus and especially a CNS shunt presents a number of key challenges, most notably, shunt malfunctions and corrective surgery, but also frequent headaches, cognitive and memory difficulties, challenges with balance and hand/eye coordination, and difficulty adapting to a noisy and complex world where the necessary accommodations are widely unavailable today. I discuss some of the challenges and much needed accommodaitons for hydrocephalus further below.
I became involved as an FDA patient advocate and inventor in hydrocephalus several years after my onset of hydrocephalus. As a patient advocate, I authored a critical 1996 citizen’s petition to the Food and Drug Administration (FDA), plus made recommendations at the 1999 STAMP Conference in Bethesda MD. I’ve also written FDA position papers and recommendations for the oversight of shunt technology, and spoke at the 1999 STAMP Conference in Bethesda, Maryland.
After writing my FDA petition on CNS anti-siphon shunts in 1996, my research led me to design and patent a non-invasive monitoring system for hydrocephalus, I named the DiaCeph Test. It initially was to run on a PDA. But I could not raise the necessary funding and support to make it. The DiaCeph Test today could be made into a mobile phone data and text app. Most of the development costs today is still from burdensome FDA guidance on mHealth apps. If it were available, it would revolutionize the care of hydrocephalus. Below, you will find a link to a blog I’ve written as to the current day challenges facing the DiaCeph Test mobile app and similar mHealth apps.
It was in 2009, that after many years of my patient advocacy and answering inquiriesfrom affected patients, I began offering patient consults for a fee. Most of my patients have been those affected by complex hydrocephalus, and with unresolved challenges. However, such unresolved questions and unsatisfactory outcomes are very common in hydrocephalus still today – arguably as high as 30 percent of all patients with CNS shunts. Below, is a link to my company web page on obtaining a hydrocephalus consult and for hydrocephalus shunt monitoring utilizing custom DiaCeph paper forms & instructions.
In 2004, I became involved in drum circlesafter earlier playing piano, vocal work, and some stage & film. I initially used piano as a form of therapy for my challenges, then later guitar, then in 2004 percussion. I immediately realized a call to become more involved in drumming, and I began to take classes, and eventually help put on drum circle events. Today, I am very involved in drum circles and drumming for the brain & wellness and for disorders like hydrocephalus.
On Sept. 24th, 2015, I held two drumming workshops at the 2015 NHF Patient Power Conference in Anaheim, CA. My methods help with others with balance, coordination, cognition, and communications challenges. SEE info in the flyer below.
One of the more problematic challenges with hydrocephalus, and most neurological disorders, is with cognitive accessibilityand it’s related sensory processing disorder, or SPD. These challenges are often disabiling and occur in hydrocephalus and neurological and learning disorders such as autism, ADHD, PTSD, Parkinson’s, stroke, post tumor, addiction, and even migraine. I have written about both fairly extensively. And own the domain CognitiveAccessibility.org– which I am yet to host a web site. I currently have it pointing to a supporting temporary page on my main web site.
COGNITIVE ACCESSIBILITY describes the array of accommodations and protections needed today by affected individuals. Without these protections, cognitive dysfunction and often one’s mental health state are easily exacerbated (made worse) by exposure and stress of unhealthful cognitive triggers. In fact, today there is a large lawsuit brought by families with autism against Disney World for failing to offer cognitive disability access to park rides. The science is real. I’ve experienced thousands of first hand accounts.
Common cognitive triggers include loud TV & radio commercials, loud helter skelter music, noisy construction equipment and machinery, bright lights, and powerful odors. When these triggers are present and not managed properly in public places, they restrict access by persons susceptable to it. Today we know that mental health and physical brain changes go hand in hand, meaning, one affects the other. This next blog describes many of the key sensory challenges in sensory processing disorder (SPD) and sensory challenges in hydrocephalus, and related disorders. Below, is also a recent diagram on the brain’s mechanisms involved in sensory processing disorder.
The protections cited are for public facilities where the triggers can often prevent an affected individual from safe and healthful use. It is said be a part of current disability law (i.e. autism v. Disney lawsuit). But rarely is enforced. Most people are unaware of the science and cause and effect of the triggers to behavioral melt-downs. In addittion to sensory protections, there needs to be better understanding of directions on UIs of web sites, signage, directions, product labels, etc. Today, I find you’re more likely to see a foreign language accommodation, than a cognitive disability one.
This blog features updated information on TSA Meet and Assist services for passengers with disabilities, and safety information on airport scanners for safe use by persons with programmable shunts for hydrocephalus. I also cover use of TSA Meet and Assist services for persons with cognitive disabilities, and information on the Air Carrier Access Act.
Airport scanners had earlier worried me as I live with a programmable CNS shunt for hydrocephalus, and I have been over-exposed to radiation from CT brain scans. With my Codman Certas CNS shunt valve, I do not go thru the metal detectors at airports or anywhere (even though some state magnetic field is safe for my shunt). I recommend that if you have any type of programmable CNS shunt, that you do not go thru metal detectors.
I’ve since updated this blog with newer information on the safe use of airport scanners.
The next two blogs list helpful information on mobile appsfor sensory processing disorder, as well as apps I use and recommend for living with hydrocephalus.
Perhaps my most creative public outreach is the fun HydroPowered.orgweb site for hydrocephalus. I created this in 2013 as a fun platform to share art, technology, and super-hero stories among those affected by hydrocephalus.
If I’ve left out any my blogs or apps, please let me know. If I may help you with hydrocephalus mobile apps, hydrocephalus consults, or drumming therapy for hydrocephalus, or if you are interested in furthering the development of the DiaCeph Test or other mobile apps for hydrocephalus, let me know. Contact me via my info below. Feel free to CLICK and SAVE my contact JPEG card.
The Internet of Things (IoT) and online practices of late have really turned into the Wild Wild West. Hacking, identify theft, rude behavior, scams, dishonesty, and malicious attacks are now very commonplace. Ads blanket your view of web pages with often deceptive hidden links or malware. It’s often not apparent if a person is who they say they are. It’s become a lawless environment. Heck, even our own U.S. government & NSA are involved in hacking and clandestine Internet activity. But, how did the Digital Age deteriorate so to this point?
One of the earliest and most instrumental web sites that helped shape our online behavior and this social change was Napster, the first music file sharing web site, which allowed free music file sharing from about 1999 – 2001. It was eventually shut down for copyright violations, which the company should have known was unlawful. Because of this, I believe Napster helped to shape (deteriorate) today’s Internet rules and etique more than any other single tech or social net advance. I believe it also gave the NSA agency more political cover in their bold surveillance programs here in the U.S., as reported in the documentary, CitizenFour. And since about 2009, hacking into medical, government, and company web sites has become much more commonplace. Because of these omline practices, many laws, long held traditions, and common decency have been tossed aside.
As I dwelled on the documentary, CiticenFour, and our economic, social, and political challenges, I am reminded of the role that Napster played via technology in changing the way we obtain music, and in ushering more free wheeling practices on the Internet. Today, I find the philosophy, “If it ain’t locked down, it’s yours,” very problematic. This new era philosophy is also reaping havoc on social & public policy. And in a round about way, CitizenFour is bringing discussion to the moral failures of our time, which could be corrected, or made worse, by Digital Age advances.
I was recently reading about the Anthem & UCLA health plan data breachs and how as many as 80M subscribers and affiliates had personal information stolen. I grew up in the 60s during an era of “free expression.” But we didn’t steal! And I can say [today] that the only laws we didn’t respect were ones that were WRONG! All but a couple have since been corrected.
Today, many people, organizations, and companies outright thumb their noses at our laws, while they attempt to rewrite them through activism, lobbying, and PACS. Often their efforts are morally and legally wrong. For instance, the news reports of Planned Parenthood being involved in selling fetal [abortion] organs. Where in Roe v. Wade did the court provide for that? These groups don’t care about the country, nor the consequences of their actions. There is ample evidence today that these kinds of widespread dishonest beliefs and methods of conducts, are responsible for most of the upheaval and suffering around the world. In the U.S., this becomes even more complicated through disinformation through political activism and the media, i.e. the “spin game.” But what we need are wisdom, leadership, and trust.
I seem to recall a couple of years ago all the excitement in the U.S. news media about the “Arab Spring.” My understanding of this was that the Internet Age had finally had its presence felt in the very troubled Middle East, and reports were everywhere that mobile devices & Internet connectivity were going to enable local populations to take back control over their own communities, states, and countries. But here we are two years later, and we don’t hear about the Arab Spring. We don’t hear about freedom. We don’t even hear about self-governance. All we hear about is ISIS, beatings, beheadings, and thousands on migrants in desperate need of help! How in the #%!*? did freedom disolve to this?
I think the leadership of the U.S. was philosophically complicet in the failures of the Arab Spring, when the Obama administration shared that they too would shut down the Internet in the event there were some type of uprising here in the states. Furthermore, I have a gut sense that leaders around the world, albeit of free nations, or vicious dictaters over troubled regions, have been sent signals that the West will not intervene politically. So I’m confused. How can we on one hand say that we want people to be free to self govern, while at the same time say that if you actually try and do it, you’ll be “turned off” digitally?
And for the above reasons, I attribute the free wheeling philosophies of the Digital Age to the slow U.S. & global economy and general lack of trust and unrest. I additionally feels these views empowered NSA to feel it was permissible to collect information on good Americans, which could potentially be used/sold in matters unrelated to homeland security.
Today’s digital age philosophy has also minimized the lawlessness in data breaches in areas like medical and other web sites, which is compromising the availability of new mHealth technologies, but also slowing global growth. The philosophy also deflects the moral failures of outsourcing millions of American jobs with little regard to future consequences. And lastly, these free-wheeling views have given activist groups unprecidented say via social media on such matters of public policy and spending, to the dentriment of others much more in need. In the end, it seems the best “liar” wins. Truth and regard for your fellow American comes 2nd.
Today’s dishonest practices have spilled over into conflicting policies on telemarketing too, for example. Though overseen by the FCC, telemarketers can legally obtain and use telephone technology that had been coveted by terrorists and stalkers! FCC instructs affected Americans to file Do Not Call List complaints on their web site. But that web site is probably hacked too. Telemarketers now even give a recorded call back message that you must add YOUR number to THEIR Do Not Call List, which is false. This is just another broad attempt to skirt the law. FCC law is undermined here by an industry permitted to use what would otherwise be defined as “clandestine” equipment.
In another FCC matter, Congress passed the CALM Act in 2012 to end loud TV commercials, which among other things, poses health issues for millions of Americans. But the loud TV commercials continue. FCC recommends filing complaints on each and every loud commercial. Be we could do that until the cows come home.
Still, in recent years, much of the focus of new laws and enforcement has with sexual expression and sexual orientation, at the expense of many more at-risk [esp. homeless] Americans, jobs leaving the country, failed domestic policies, and protecting our borders.
The country (and Internet’s) new philisophy also led to very little legal action on the 2008 collapse of our banking system, an investigation of the false information leading to the Iraq War (now ISIS), and the ill effects of millions of undocumented workers in the U.S. who are depressing wages, overcrowding cities, and straining city services. There is irony here too – that despite so much emphasis on free expression, there is little substantive discussion on issues like illegal immigration, as Donald Trump has found found out, because the discussion of the subject facts & terms is “politically incorrect.”
Any discussion seems to lead to opposing sides spewing false statements and trying to exploit social media for their own devices. Today, Congress and states are left with trying to craft policy that will not withstand the test of time. So, Hail Napster for helping to make this all possible. But, maybe we were headed there nonetheless, and Napster just gave us the opportunity to screw ourselves! But not everyone used Napster & file sharing. I didn’t.
While we as citizens are told to stand down and accept a more lawless society, our government has broadened its domestic powers with policy like the Patriot Act, which permits local police to acquire military weaponry, forbidden by the Constitution. It has become a gray area. These weapons could someday be used against Americans wanting to demonstrate because they disagree with policy. Not a comforting thought. I admit the documentary, CitizenFour, opened my eyes to a lot of this.
But, I was already disappointed with our country of late. There’s a lot to be concerned about. We have policy that is likely to bring about failure, and widespread suffering. Some of these policies are not even founded in law or the U.S. Constitution.
While some hail Napster as one of the great innovations of the Digital Age, I view it as perhaps the 1st major failure of the Internet, the “nuclear bomb” of sorts of the Digital Age. It revealed how we as a society could cast aside longstanding law and moral practices morality, merely for greed! The Napster & NSA failures [CitizenFour documentary] should remind us of our larger responsibilities as a democracy and free society. There is an inherent imperitive “moral clause” in self-goverance. Once this is breached, we must act swiftly to repair it before decay & lawlessness spread. Our 911 tragedy revealed a lot about failed U.S. policies. It also gave way to the Patriot Act and the government’s endless claims over privacy, in the absence of war or any verifiable threat.
For me personally, I am still waiting to find out who killed President John F. Kennedy. Why the secrecy? Today the government wants to behave like they’re still in the 1960s. Or like the Catholic church of old!
Napster also changed the way we view intellectual property, commerce, and common decency over the Internet. More than any other single piece of technology, Napster was able to coerce millions of Americans and Internet users down an immoral course to obtaining music without paying for it. This no doubt helped shape today’s lawless social order on the Internet.
So where are we headed now? These technologies are far less useful without trust and adoption. I sense that millions of Internet users are holding back on new purchases and projects today because of uncertainties over Internet privacy and adoption.
On one hand, I can make the argument that the Internet has done more HARM than GOOD. Many mobile apps are in violation of reasonable protections of privacy. Everyone has been assuming that some knowledgeable group or government agency has been reviewing the Permission Agreements which we all [x] sign on. But the truth is, the permissions are often open ended and unreasonable, and few know to what degree their privacy is compromised. Up until the 1980s or so, our country had many highly respected public interest organizations looking out for us. Today, that seems limited to the ACLU, which I’m not even sure if they’re based in America. With so much clandestine surveillance and conflicts of interests, I fear public interest organizations can no longer protect us.
I was never a Napster member or fan. Despite being very techie, I never illegally downloaded a single song. Not that I wouldn’t on occassion borrow and copy a CD from a friend. But infrequently. And between good friends. Still, Napster did serve as a means to an end. It helped to solve the contraints and fair pricing of today’s music.
In 2015, we find ourselves in familiar territory again needing technology to solve the “unfairness” in the unavailability of TV programs. Access to programs must be fair and reasonable, which we learned in language used by the presiding judge in the DeflateGate NFL case, throwing out Tom Brady’s 4-game suspension on appeal.
In looking back, and forward, each one of us must decide for ourselves on what we view as right and wrong.
Today, we are bombarded with misinformation from groups with hidden financial interests in matters. Still, despite my criticisms on this blog, I am actually an OPTIMIST!
Below, I share a link to my Dec. 2014 blog on change:
People want to glorify Napster and others of the Internet Age. I grew up in the 60s, and we didn’t believe in stealing. We only wanted to be left to do our thing! I find Napster and NSA surveillance [in documentary CitizenFour] strikingly in agreement. Both felt it OK to steal information! That’s what Watergate was about. It didn’t work out well for them.
This 2013 Napster story by The Guardian takes a look back at Napster.
ABOUT ME: I worked w/ computers and technology in nuclear medical imaging from 1975-1992, where I learned to write basic code, author medical procedures, troubleshoot instrumentation. 1982-1992 owned my own imaging company. A 1992 auto accident, injury & hydrocephalus condition led to efforts w/ assistive cognitive technologies, design of an mHealth diagnostic app (1997), and work in the neurosciencees & music therapy. I have also consulted in legal cases in failure to warn, and am becoming more involved in cognitive accessibility, where accessibility and protections are largely ignored. I currently own the domain CognitiveAccessibility.org.