Mobile Apps and Patient Tools for Living with Hydrocephalus

This blog discusses mHealth mobile phone apps and accommodations for living with hydrocephalus.

I initially wrote this in 2015 under the title “Spread Awareness of Hydrocephalus on Rare Disease Day.” But 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 apps and 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.

Brain Diagram of Ventricles often Enlarged in Hydrocephalus
Brain Diagram of Ventricles often Enlarged in Hydrocephalus

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.

Stephen Dolle invented his DiaCeph Test following his 1996 FDA petition that was then used to direct this 1998 shunt surgery
Stephen Dolle invented his DiaCeph Test following his 1996 FDA petition, which was then used to direct this 1998 shunt surgery

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.

Great pic NHF members affected by hydrtocephalus at a 2015 Orange County fundraiser.
Great pic NHF members affected by hydrtocephalus at a 2015 Orange County fundraiser.

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.

Shunt Illustration for Hydrocephalus
Shunt Illustration for Hydrocephalus

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.

Stephen Dolle in Washington, D.C. for the FDA's 1999 STAMP Conference
Stephen Dolle in Washington, D.C. for the FDA’s Hydrocephalus STAMP Conference in 1999.

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.

The DiaCeph App Creative Brief details its design and unique features in monitoring of the disorder hydrocephalus
The DiaCeph App Creative Brief details its design and unique features in monitoring of the disorder hydrocephalus

DiaCeph Test could be Mobile Phone App

It was in 2009, that after many years of my patient advocacy and answering inquiries from 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.

My Hydrocephalus & Shunt Monitoring Consults

Prosperity is based on sound information.
Prosperity is based on sound information.

In 2004, I became involved in drum circles after 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.

Drumming Therapies for Wellness and Neurological Disorders

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.

Seniors came alive in this 2010 drum circle for wellness and movement.
Seniors came alive in this 2010 drum circle for wellness and movement.
Drumming workshop for balance and movement challenges in living with hydrocephalus
Drumming workshop for balance and movement challenges in living with hydrocephalus

One of the more problematic challenges with hydrocephalus, and most neurological disorders, is with cognitive accessibility and 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 accommodations er CognitiveAccessibility.org
CognitiveAccessibility.org

CognitiveAccessibility.org

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.

Brain centers involved in SPD or sensory processing disorder, courtesy of UCSF
Brain centers involved in SPD or sensory processing disorder, courtesy of UCSF

New Insights in Management of (SPD) 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.

TSA Cares Logo
TSA Cares Logo

Airport Travel, Screening, and TSA Services for Persons with Hydrocephalus

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 apps for sensory processing disorder, as well as apps I use and recommend for living with hydrocephalus.

Google play-store-logo

Blog: Mobile Sound Apps for Hydrocephalus & Sensory Processing Disorder

 

Barometric Pressure graph reveals steep drop and rise which can trigger micraine headache
Barometric Pressure graph reveals steep drop and rise which can trigger micraine headache

eWeather HD App helpful in Managing Weather related Migraine Headache

This next blog is a discussion of how to best select and design medical and mHealth apps. It comes from my many years of experience in mHealth & diagnostic medicine.

mHealth Apps in Neurology
mHealth Apps in Neurology

Design and Best use of mHealth Apps

Perhaps my most creative public outreach is the fun HydroPowered.org web 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.

HydroPowered.org Share the Passion for Hydrocephalus
HydroPowered.org Share the Passion for Hydrocephalus

Blog on HydroPowered.org Platform Connects Hydrocephalus Families

Let’s undertake some effort in hydrocephalus for Rare Disease Day. If needed, I am prepared to call upon “The Hulk” for a little extra help.

The Hulk comes to the aid of brain injured survivors in crushing this tree trimming machinery
The Hulk comes to the aid of persons with cognitive disabilities & SPDs, crushing this noisy tree trimming machine.

Apps & Web Sites I Recommend for Persons Living with Hydrocephalus

Android Play Store Elecont HD Weather App link

Apple iTunes Store Elecont HD Weather App link

My *Blog on eWeather HD* App and How to get FREE Android Download

My Blog on Tips for Sound Sensory Processing Disorder

Smart Tools Page on the Android Play Store

Smart Tools Apps on the iTunes Apple Store

Smart Tools Instruction Manual

Tips on Airport Travel, Screening, and TSA Services for Persons with Hydrocephalus

Drumming for Wellness workshops

Drumming in the Workplace

Drumming Therapy Case Study in a Child with Cerebral Palsy and Autism

HydroPowered.org

Shunt Monitoring and Consults for NPH & Hydrocephalus

DiaCeph Monitoring Method hopes to be new Mobile App

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.

Stephen Dolle
Tel. (949) 642-4592
Email: contact[at]dollecommunications[dot]com
Dolle Communications

HydroPowered.org
StephenDolle.com

Contact Stephen Dolle
Contact Stephen Dolle

 

 

 

 

 

 

 

 

Contact Dolle Communications
Contact Dolle Communications
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Drum Beats can help NFL Teams overcome Crowd Noise at Football Stadiums

Taiko Drummer sets the Time, Rhythm, and type of Movement
Taiko Drummer sets the Time, Rhythm, and type of Movement

Neuroscientist and percussionist Stephen Dolle says drums & drum beats can be used in practice drills to help NFL football teams with timing, on-field communications, and snap count, and overcome some of the effects of crowd noise at NFL football stadiums, like the Seattle Seahawks, New Orleans Saints, Kansas City Chiefs, and Denver Broncos. Today, many stadiums help create a scientific home field advantage, or 12th Man, design and amplification of fan noise in their stadiums.

The Challenges of Sound Sensory Processing in Football Stadiums Today
The Challenges of Sound Sensory Processing in Football Stadiums Today

Humans (and animals to varying degrees) are effected by sound through the brain’s sensory processing. Sound affects in both positive and negative ways, depending on the type, loudness, and patterning of the sound. As music, sound was shown to create favorable health effects in the earlier reported study of the “Mozart Effect,” where cognitive function improved after listening to classical music. It’s effect is largely based upon entrainment of the listener’s brain waves to the waveform of classical music.

But on the opposite end of the spectrum, sound can create disruptive and harmful effects upon the brain when it becomes too loud and disordered and interferes with healthy cognitive processing. And in sports stadiums for football, fan noise is used to both disrupt on-field communications, and interfere in the cognitive focus of the visiting team. Given the right mix and decibel of sound, you can essentially incapacitate players on the field. Or at the very least, make it very difficult for them to communicate and focus.

On a team level, players must be able to execute a certain amount of verbal or audible calls and dialogue. And it is more than just communications, it helps the team get into a tempo of plays and team connectedness, termed brain wave entrainment, or BWE. Groups typically rely upon audible communications to establish BWE. In many cases music is used , i.e. fitness classes, team practices. When participants are able to play an instrument, such as a drum, their engagement tends to have a more dramatic effect in the entrainment process. Of course, any intervening sounds or lights different from the communal BWE pulse or sound, becomes disruptive to the group connection and BWE.

However, this BWE disruption can be offset by training/playing to rhythmic pulses or rhythms, while engaging the body in rhythmic movement. In this way, “movement” is used rather than sound to establish the BWE and tempo. If a football team can establish their BWE during a game without the need for sound, they become much less dependent on audible sound.

A schematic showing how brain wave entrainment occurs.
A schematic showing how brain wave entrainment occurs.

The U.S. military for many years has used chants, drums, and recorded sounds during training to help syncopate on-field operations and communications. Football play is similar in that on-field timing, syncopation, and communication is critical to proper execution of play. In football, the physiology of play and movement is also described in terms of “proprioception,” or memory of muscle movement. And there are cognitive factors too to consider in play execution, where crowd noise can interfere with communications and cognitive reasoning. But rhythmic cues can be used in place of audible sound for communications. And once a team has established its BWE and tempo, rhythmic cues as communications would be much easier to utilize.

The four levels of brain wave states are shown in this illustration
The four levels of brain wave states are shown in this illustration

There are also “brain wave states” to consider during on field play. Typically, a player’s brain wave state would be at a faster “Beta” rate as can be seen in the image below. However, the offset to this would be to remain more calm and focused, and this type of mental or cognitive reasoning is more commonly seen during the “Alpha” wave state of meditation. In this state, an individual’s memory and recall is more enhanced, and it would be safe to say that athletes who get into a zone are undoubtedly more in a Beta wave state than their player counter-parts. A great deal of research has gone into being able to moderate one’s brain wave state for optimal cognitive performance. I’ve also written quite a bit about this in my blog on Drumming for Employee Engagement.

Employees at this firm in Orange County, CA, experienced employee engagement in this drum circle for workplace wellness
Employees at this firm in Orange County, CA, experienced employee engagement in this drum circle for workplace wellness

In 2014, the NFL fined the Atlanta Falcons for their role in piping in stadium noise. Today, stadiums are designed to redirect crowd noise toward the playing field, that create adverse conditions for the visiting team. This has since been named the “12th man.” Visiting teams have found the noise levels so loud as to interfere with on-field communications, snap count, syncopation of play, and cognitive focus.

This diagram of the brain reveals the key areas involved in music, cognition, and basic function
This diagram of the brain reveals the key areas involved in music, cognition, and basic function

In military combat, sound is regularly used to break the will of prisoners to obtain sensitive information. Is it torture? Depends who you ask. In ordinary life, individuals who suffer from neurological disorders, post concussion syndrome, PTSD, hydrocephalus, and related sensory processing disorder are uniquely susceptible to the ill-effects of high decibel, repetitive, and white noise type of sound. For me, it was a 1992 brain injury that left me with hydrocephalus, that led me to undertake brain and music research. For me and many others, sensory dysfunction occurs at lower sound levels.

My earlier research with sound and sensory processing disorders involved a Metronome sensory processing study I published on my web site in 2002. I discovered how rhythmic patterns in sound determined largely how we process and assimilate it, and that repetitive and unstructured sound could trigger neurologic sequela, referred to today as sensory processing disorder, or SPD. Conversely, I showed how “melodic patterns” in sound such as in music or drum beats, could improve one’s intolerance to sound. These SPD neurological sequela are said to be quite common in post concussion disorder, and accordingly, I would speculate also in the developing stages of CTE. In fact, I’d go so far as to state that SPD with sound is likely the No. 1 trigger of mental health behavioral meltdowns in persons suffering from post concussion and CTE disorders, with stress due to PTSD induced health challenges, as No. 2. I published my blog below detailing my findings and solutions for managing sensory processing disorder in 2014. And continue to update it with new developments in SPD and brain health.

New Insights in the Management of Sensory Processing Disorder 

The U.S. military has been training special forces by subjecting them to high levels of disorganized and repetitive sound, and instructing them how to find a syncopating pattern within the mix of the noise, to maintain their cognitive focus. They probably use electronic & recorded audio, but this could be done with drum beats and musical instruments as well. The brain science behind this compensatory mechanism is, if you can connect with a pattern or rhythm in the sound, you’ll better withstand its ill-effects, drop in cognitive function, mental focus, and breakage of your will and psyche. The same mechanism is applicable in pain management, where the role of the psyche is critical.

Read my study at:

2002 Study on Sensory Processing and Rhythmic Pattern of Sound

Boss BR-8 includes a full 50 selection Metronome
Boss BR-8 includes a full 50 selection Metronome

There is considerable supporting research for how our brains & bodies are well adapted for rhythmic patterning as seen in all movement, athletic skill, verbal & non-verbal communications, and cognitive reasoning (analytical & relational reasoning). Researchers established the benefits of listening to melodic music in the Mozart Effect.

Drumming is a great tool in teambuilding and in engaging those around you
Drumming is a great tool in teambuilding and in engaging those around you

We’ve noted that drumming and playing percussion instruments (drum circles) can help offset the ill-effects of loud repetitive sound and white noise in persons who are sensitive to sound. NFL teams could use these methods to help players suffering from sensory processing disorder & PTSD complaints associated with repeat concussions. From our research and experience with neurological disorders and sensory processing sequela, we created the slogan, “ENGAGE THE RHYTHMS OF YOUR BRAIN.” Why engage the rhythms of your brain? How does is it all work?

Stephen Dolle speaks on drumming for the brain at Wright State University
Stephen Dolle speaks on drumming for the brain at Wright State University

 

Drum play during football practice would help teams with timing, sensory processing, communications, brain wave entrainment, and noise challenges during actual games.

Dolle Web Site on Drumming for Football

Drum circle beats can help timing and communications in NFL & College football
Drum circle beats can help timing and communications in NFL & College football

Blog on Drumming for Basketball/Brain Science of Basketball

Drumming for basbetball workshops aid movement, timing, and on court communications
Drumming for basbetball workshops aid movement, timing, and on court communications

SEE also my fundraising blog below with a lookalike photo collage with Houston Texans defensive end JJ Watt, entitled:

Cause Marketing Web Site for Hydrocephalus uses Super-Hero Theme

I’ve used drumming in a variety of ways to improve movement, balance, coordinationcognitive focus, sound sensitivity, non-verbal communications, confidence, and overcoming adversity. I write about mobile sound apps in another blog.

Please contact me per the information below. Feel free to CLICK and SAVE my contact JPEG card.

Stephen Dolle
Neuroscientist, mHealth Inventor & Drum Circle Facilitator
Tel. (949) 642-4592  contact[at]dollecommunications[dot]com

DolleCommunications.com

 

New Insights in the Management of Sound Sensory Processing Disorder

Drumming and the Brain.diagram

This blog discusses the science and everyday managment of children and adults who live with neurological & learning disorders, PTSD, and other disorders associated with sensory processing disorder (SPD) and intolerance to sound, lights, and scents. In these affected individuals, sensory overexposure often results in medical sequela ranging from headache to dizziness, irritability, behavioral changes, descreased cognition, nausea, vomiting, and fatigue. In later stages, it can trigger “siezures.” Sound sensativity affects about 20 percent of the population. Problematic sensory processing disorder affects 5-10 percent of the population. 

Sensory processing disorder is related to dysfunction of any of the five (5) senses. It was earlier termed sensory integration disorder (SID), hyperacusis, sensory overstimulation, and sensory overload. Sensory problems and SPD commonly follow neurological disorders and brain injury spanning hydrocephalus, post TBI, post tumor resection, multiple sclerosis, migraine disorders, drug & alcohol addiction, and PTSD, ADHD, ADD, and autism spectrum learning disabilities.

I became an affected SPD sufferer after onset hydrocephalus in 1992 from a head injury. Since 1995, I’ve undertaken research and implemented my findings in neurological consults (hydrocephalus monitoring, patient consults) and in drumming therapy and drum circle workshops with a wide array of health populations. While my specialty is mhealth, medical devices, and cognition, I am also involved in general health, movement disorders, and wellness and write about my findings online. I am of the opinion that sound, light, motion, and stress act as “sensory triggers” and are responsible for the high prevalence of PTSD (post traumatic stress disorder) and mental health challenges today. Imaging studies show that PTSD produces pathological changes in the brains of children. So, no doubt PTSD and sensory overload is wreaking havak on the brains of adults, including, police officers and those living in inner cities with high rates of crime.

Police officers are now diagnosed with PTSD disorder like their counterparts in military combat.
Police officers are now diagnosed with PTSD disorder like their counterparts in military combat.

The web page linked below provides a nice overview of the five (5) senses. Typically 1 to 3 of these are compromised in sensory processing disorder (SPD).

The Mystery of the (5) Senses (Cerebromente.org)

It has only been about 15 years (about year 2000) that SPD and sensory processing dysfunction have really been recognized. So we have a long way to go. Testing and documentation, education, and protections remain years behind what they should be.

I attribute this in part to the government’s earlier efforts to refute PTSD from military combat, and in recognizing autism as a disorder in of itself. In autism, there is also much debate and criticism of a causal relationship with childhood vaccines. And this has not helped to further care and treatment of SPD disorders.

My onset of SPD was gradual and often followed my shunt malfunctions and surgical treatment of my hydrocephalus. By the late 1990s, I understood SPD as a diminished capacity to process auditory, touchvisual, olfactory, and gustatory sensory stimuli. And over time, I began to view the challenges of SPD in terms of access & accommodations to public places, and even more broadly, cognitive accommodations with web sites, store displays, and user instructions. Today, the broader terminology for these considerations is cognitive accessibility, where I have subsequently set up a web page at www.CognitiveAccessibility.org

This next study below is list breakthrough research on sensory processing disorder (SPD) where scientists were able to document the areas of the brain affected by SPD. Thie image below is taken from their study.

Breakthrough Study Reveals Biological Basis for Sensory Processing Disorders in Children

Brain centers involved in SPD or sensory processing disorder, courtesy of UCSF
Brain centers involved in SPD or sensory processing disorder, courtesy of UCSF

A Little about Me

Stephen Dolle invented his DiaCeph Test following his 1996 FDA petition that was then used to direct this 1998 shunt surgery
Stephen Dolle invented his DiaCeph Test following his 1996 FDA petition that was then used to direct this 1998 shunt surgery

My name is Stephen Dolle and I began this blog in 2010. I developed hydrocephalus 4 weeks following an auto accident in 1992. In the years that followed, I had many challenges to overcome, and became involved in Food & Drug Administration advocacy that led to my designing the DiaCeph Test for mHealth monitoring of hydrocephalus.

My SPD challenges weren’t so apparent from the start due to all the challenges. It was probably year 3 that I had begun to notice how sounds and visual stimuli (lights & erratic movements) could bring on a neurological event. Young children chasing birds would really get me. For sound, it was just busy environments that bothered me. I took a few more years before I was able to identify specifically what sounds and how they could bring on a neurological event – which I term the SPD effect. This can vary a bit from person to person. But typcially you’ll see a decrease in cognition, an increase in irritability and behavior change, headache, and changes in balance and orientation.

From 1992 to 2013, I underwent twelve CNS shunt revisions. In 2015, I was also diagnosed with pachymeningitis, and it has further aggravated my SPD challenges.

It was my astute neurologist in 1999 that shared new research on sound hypersensitivity, and instructed me with tips on how to help manage it. Back then, it was often termed “overstimulation.” And it then led to my undertaking a critical SPD study.

Sound and Touch (Balance) SPD Sensory Study in Hydrocephalus

Boss recorder and metronome were used in 2002 to evaluate sensory processing in individuals with hydrocephalus.
Boss recorder and metronome were used in 2002 to evaluate sensory processing in individuals with hydrocephalus.

In 2002, I undertook my first SPD Study, where I employed both the Aerex Balance Pad and the Boss BR-8 Recorder (w/ metronome) to evaluate touch, visual, and sound sensory challenges. I took my materials to a hydrocephalus conference at St. Joseph’s/CHOC Hospital in Orange, CA, and also to England Physical & Balance Therapy in Garden Grove, CA, where I was undergoing vestibular therapy. I published my study results on my web page below.

I employed the Boss BR-8 recorder and metronome to study the effect of sound on cognition in persons with hydrocephalus, plus interviewed about 20 individuals claiming to be affected by sound intolerance. I learned that the adverse effects of sound was more due to “rhythmic structure” of sound, or degree of syncopation or melody, versus volume or tempo.

I used the Airex balance pad to evaluate gaze dependency of balance in individuals with hydrocephalus. What I learned here, was that patients who were unable to maintain balance on the pad while focusing on a moving target (business card on a stick), termed gaze dependency, reported more problematic chronic headaches and SPD complaints. I concluded that additional deficits were likely causing the decreased sensory processing. I felt that the additional deficits might also help predict poor outcomes after the insertion of a CNS shunt for hydrocephalus.

Later in my study, I found that melodic and highly syncopated sound patterns seemed to offer a therapeutic effect to some of these complaints – as a mechanism in support of music therapy. I created an “audiotape” of melodic metronome beats and piano sequences from my Yamaha keyboard, and would play and listen to this audiotape 2-3 times per week. It seemed to help my sound sensory issues.

I published my study on my web site, and it has been hosted there since 2003.

It is common to experience difficulty with sound, light, and motion after brain injury and onset of neurological disorder. Perhaps the most problematic is offensive types of unsyncopated and white noise sound, which is everywhere today in busy urban areas.

You can simplify sound sensory processing into the “melodic” Mozart Effect on the healthy end of the spectrum, and tortuous repetitive sounds on the unhealthful end of the spectrum. Repetitive unhealthful sounds can make even normal people ill at the right decibel and sound pattern. In fact, sound is still today used to extract information from prisoners during wartime, and it plays a significant role in football & basketball.

Drumming for Football

In 2014, I published the above provocative blog on SPD and drumming for football, and detail how the ill effects of sound plays a role in college and NFL football. I discuss sensory and cognitive challenges from fan & stadium noise, and methods for using drum beats to help play call synchronization, player movements, and communications.

My Introduction to Drumming & Drum Circles

It was in 2004 that I became involved in hand drumming and drum circles from my personal and therapeutic activities with music. I had no thought or expectation that drumming would help my SPD challenges. But after about a year of regular drumming, I discovered that my SPD sound sensitivity was improved. I re-examined my research and proposed that group drumming might help affected individuals to better organize sound, like a form of physical therapy for sound processing. My company web page below discusses by durrent work with drumming for general health and neurological disorders.

 Drumming for Wellness

Young children captivated by their play in a drum circle
Young children captivated by their play in a drum circle

Signals traverse our brains in wave form patterns like those seen on EEG tests, and there are literally millions of signals traversing brains daily. As our brains process signals in wave patterns, so do we physically move about in wave forms or rhythmic patterns, and one area where the two overlap today is in “proprioception,” where our bodies are able to remember specific types of movement patterns, i.e. in sports, dance, and this then is integrated into whatever sport, dance, or social activity we are doing.

The four levels of brain wave states are shown in this illustration
The four levels of brain wave states are shown in this illustration

As I became involved with drum circles and drumming for the brain, I discovered how drumming can help retrain the brain’s ability to process unsyncopated sound by engaging the individual in disordered sound, and allowing them to integrate an order to the beats played – in essence, serving as physical or occupational therapy for the brain. I then began to study audible rhythm’s role in balance and movement, cognition, mental health, team-building, and stress reduction.

Hand percussion instruments helpful in music and drumming therapy, and handy when traveling
Hand percussion instruments helpful in music and drumming therapy, and handy when traveling

In February 2016, I updated this earlier blog on my experience with drumming therapy in cerebral palsy and autism, plus I’ve put on quite a few drumming workshops for a number of neurological disorders. I link all of my efforts together as best I can.

Drumming Therapy Experience in a Child w/ Cerebral Palsy & Autism

This music and the brain illustration depicts the areas of the brain involved in listening and playing music
This music and the brain illustration depicts the areas of the brain involved in listening and playing music

Below is the autism article in support of the autistic boy in the video at the mall. This story and short video on sensory processing disorder (SPD) in autism is featured on The Mighty web site. I’ve pasted the YouTube link below so that it might play here.

Sound Sensory Processing Dysfunction in Autism Spectrum Disorders

In this video, Alexander Marshall, 10, of West Yorkshire, England, is the star of The National Autistic Society’s new Too Much Information campaign, and he’s featured in a short video that shows what sound sensory overload can be like.

The video is shot from Alexander’s point of view during a trip to the mall. From noises to smells to bright lights, it shows all the things that might cause Alexander, who was diagnosed with autism two years ago, to have a meltdown.

SPD is often a problematic medical/disability issue in autism, and deserves to be much more a part of our public health dialog. In fact, I believe we should approach autism from the standpoint of brain health, and treat it’s related sensory processing disorder more for what it is, a sequel of medical complaints.

If 20% of the populace were found vomiting from traveling in cars and public transportation from motion sickness, that would be a big story. But when it’s an individual struggling with a health issue involving the brain (as opposed to the middle ear), the public sees it thru biased eyes. And governments do too. The link below is the National Institute on Health April 2016 publication of alternative medicine for autism.

NIH National Center for Complimentary & Integrative Health

April 2016 Newsletter on Autism

While my own SPD complaints are not normally as severe as the child in this film, at times I feel a lot of what this child is experiencing. Often I am forced to undertake a number of steps to protect me from unhealthful sound. SPD is not just about autism or hydrocephalus or PTSD. It’s about brain health, public health, and how we all approach dysfunction of the brain.

SPD, Integrative, and Alternative Medicine in Drug & Alcohol Addiction

In September 2015 I spoke on alternative medicine, SPD, cand cognitive accessibility in drug and alcohol addiction at Sovereign Health of Orange County. My presentation/blog is quite lengthy, but I share a lot of detail into SPD about 2/3 of the way through the blog.

Illustration of the Meridian fields used in Acupuncture and Alternative Medicine
Illustration of the Meridian fields used in Acupuncture and Alternative Medicine

Today in 2016 — the best way to manage SPD is not to put yourself in an environment that is more than your can process, leaving you overstimulated. You want to get out and do things. But your neurological stamina and your environment are changeable – and you may often not take the right intervention to head off an SPD event in time. Then you’re dealing with neurological sequela.

It’s important to know the individual medical makeup of each affected person, and the nature of their surroundings at any given time, and catch the early WARNING signs. If you’re around someone with SPD difficulties, the signs to watch for are: changes in their eyes, demeanor, irritability, cognition – which indicate overstimulation. Ultimately it’s a function of matching neurological stamina with a tolerable environment. Sound mobile apps, ear plugs, and eye cover can help too. My blog below discusses in more detail how decibel meter apps can help in managing sensory processing disorder. And I discuss my proposal for a new sound processing standard and algorithm measurement that could be used in sound measurement apps.

Decibel Meter Apps in Managing Sensory Processing Disorder

mHealth Apps in Neurology
mHealth Apps in Neurology

My Proposal for a Sound Processing Standard & SPD Algorithm for Mobile Apps

The decibel sound scale is now more than 50 years old. Its time we create a Sound Processing Scale & Algorithm for Measurement
The decibel sound scale is now more than 50 years old. Its time we create a Sound Processing Scale & Algorithm for Measurement

Cognitive Accessibility

The image of  “The Hulk” crushing a tree-schredding machine is provided as it is symbolic of the crisis facing individuals with sound sensitivities leading to neurological and behaviorial  sequela. The idea for the animated Hulk Crushing the Tree Shredder comes from my HydroPowered Super-Hero series, which is a collection of super hero stories about children living with hydrocephalus. The tree schredding machine also illustrates the challenges that public noise poses to persons with sound sensory disorders. Sound sensativity affects as much as 20 percent of the population today. Yet comes with little to no accommodations or protections. 

Cognitive Accessibility in SPDs.Hulk Destroys Tree Shredder
Cognitive Accessibility in SPDs.Hulk Destroys Tree Shredder

The broader issue of sensory processing disabilities and SPD spans not only adverse sensory responses on cognition, but also comprehension of information, user instructions, Internet access, access to technology, and reliability of assistive technology. In these regards then, the access to and controlled environment of, defines an accommodation that should be protected by applicable disability rights persuant to the Americans with Disability Act (ADA), and Sections 504 & 508 of the Rehab Act.

Cognitive Accessibility accommodations er CognitiveAccessibility.org
Cognitive Accessibility accommodations er CognitiveAccessibility.org

One of the common sound/SPD challenges today is with loud and eratic TV and radio advertisements. I am yet to post YouTube examples, but hope to in the near future. I have been exploring technological and regulatory solutions, including, a proposal for a new sound processing standard that would allow for a reproducible means of evaluating sound for likely unhealthful qualities.

A new sound processing standard could help identify differences in sound makeup and resulting audio & brain processing, particularly in affected individuals. This would be particularly helpful in screening offensive TV and radio commercials, machinery, and non-synchronous broadcasts in public places, and would be used in concert with the current decibel emission volume standard. Generally the more monotonous or less synchronized a sound, or the more its component audio is broadcast at the top of the EQ spectrum, the more difficult it is to process. Some types of these sounds are used to break the will of prisoners. Many of today’s audio broadcasts and public noise are now approaching unhealthful levels.

The image below is a c-panel screenshot of Time Warner Cable’s VOIP telephone options for blocking “telemarketer” and other unwanted telephone calls. I have inserted my proposal for TV quiet options (technologically possible) to screen/mute/lower unhealthful audio from TV commercials and programs. I shared this on Twitter and Facebook too recently.

Screenshot of Time Warner Cable "quiet" options to block unwanted phone calls, plus Options I added for blocking audio of unhealthful TV commercials and programs.
Screenshot of Time Warner Cable “quiet” options to block unwanted phone calls, plus Options I added for blocking audio of unhealthful TV commercials and programs.

Cognitive Accessibility at Dolle Communications

In 2013, I purchased the domain CognitiveAccessibility.org and have been organizing content for broader plans. This domain currently points to a page on my main web site. I do all of my web site work in Microsoft Frontpage, which is being phased out by web hosting companies. I am now writing more on WordPress as have found it easier to use than learning a whole new web platform.

Below I share my blog on TSA Travel Accessibility tips for when flying with a CNS shunt for hydrocephalus or any cognitive disability.

TSA Accessability Cognitive Disability Hydrocephalus Travel Tips

TSA Cares Logo
TSA Cares Logo

These last two blogs discuss healthful solutions for sensory processing disorders as they relate to the sports of basketball and football. I also discuss methods in basketball for mindfulness and therapy to help calm the brain.

Brain Science and Therapeutic uses of Basketball

image

Drum Beats help Sound Sensory Management in Football

The Challenges of Sound Sensory Processing in Football Stadiums Today
The Challenges of Sound Sensory Processing in Football Stadiums Today

And for fun stories and art in support of hydrocephalus, visit my HydroPowered.org web site or blog.

HydroPowered Blog

HydroPowered.org Share the Passion for Hydrocephalus
HydroPowered.org Share the Passion for Hydrocephalus

YouTube Videos document Harmful Audio of Sounds from Everyday Life

The audio in the videos below are known to “trigger” neurological complaints and behavioral changes in persons with neurological & learning disorders with secondary sensory processing disorder (SPD). The difficulty in the sound is often in the lack of melodic pattern as I wrote about in my above 2002 metronome study. A similar depiction is presented in the above video on autism from “The Mighty.” Sometime soon, I will update this section of videos with “offensive TV & radio commercials” airing today. Despite passage of the CALM Act baring loud commercials in 2012, it seems that little has changed. Advertisers also manipulate the sound EQ distribution of audio in commercials to get your attention, making it more problematic to persons with neurological disorders and SPD.

CAUTION: Please turn down your audio.

These sounds may trigger medical sequela.  

Video of a Problematic Noisy Construction Site

Video of a Problematic Mobile Carpet Cleaner

Video of a Mixture of Problematic Musical Sounds

Video of how I wish Construction Equipment Sounded

If you would like me to speak on my efforts with sensory processing disorder, workplace drumming or therapeutic drumming, please contact me via the information below. Feel free to CLICK and SAVE my contact JPEG card.

Stephen Dolle
Neuroscientist & Drum Circle Facilitator
Dolle Communications
Email: contact[at]dollecommunications[dot]com
Tel. (949) 642-4592

Contact Stephen Dolle
Contact Stephen Dolle

 

 

 

 

 

 

 

 

Contact Dolle Communications
Contact Dolle Communications

 

 

Justice Department rejects Disability Complaint on Sound Accessibility at YMCA of Orange County, Similar Venues

Complaint to the U. S. Justice Dept for sound sensitivity accomodation for loud music and screaming at YMCA of Orange County
Complaint to the U. S. Justice Dept for sound sensitivity accomodation for loud music and screaming at YMCA of Orange County

This blog discusses my disability rights complaint to the U.S. Justice Department Civil Rights Division, and request for a sound sensory accommodation from loud music and screaming broadcast all over my YMCA of Orange County fitness center where I was a member. I had been a member from 2007 to 2011. But it was in the later part of 2010 that a new fitness director was hired, who began putting on zumba classes with loud music and screaming, which was then broadcast all over the gym. Being exposed to this in the adjacent rooms then made me ill.

I undertook numerous remedies to bring a resolution to this. I was eventually asked WHY I couldn’t tolerate it, that loudness levels were within limits set my their national organiozation, and was told to where ear plugs when in the facility – which I tried for a while. But I kept having to take them out when a nearby member spoke to me. Other members (esp seniors) I was told discontinued their membership due to the unhealthful noise. Earlier in 2007, I had abandoned my 25 year membership at 24 Hour Fitness after they began playing loud overhead music. This YMCA gym could have, and should have, made the necessary accommodation I requested. In their ruling, DOJ rejected my complaint in its entirety and instructed me to seek other (esp. civil) remedies. In my opinion, both were legally and morally in the wrong! But there’s very little advocacy for SPD and sound sensory disabilities.

YMCA’s practices effectively barred me and other members with sensory processing disorder from using their fitness facility. The loud music and screaming gave me headaches, nausea, made me dizzy, and irritable – not unlike motion sickness. This is a known medical response for affected individuals to this type of sound sensory stimuli. And it gets better. After I filed my complaint to DOJ, the fitness director created a fake incident alleging I was disturbing other members, where I was told my membership was no longer good. I left and never returned!

Prior to filing my complaint with DOJ, I verbally and requested in writing to management for a change in their music broadcast policiesYMCA declinded to make any accommodation or modification. This was also after I had done volunteer work (music therapy) for this YMCA, and after others (affected seniors) had donated money.

It took DOJ two years to respond with a “no.” My complaint was filed with the “Disability Rights” division, who has jurisdiction over public and private facilities for disability rights accommodations. My complaint asked DOJ to draft new language of protections applicable to public and private venues across the U.S. where loud music or machinery poses unhealthful consequences to persons with neurological and sensory processing disorders.

Mostly what this YMCA needed do as an accommodation – was keep the door of the Zumba classroom closed. But management decided it more important to leave the door open, despite the room already having numerous open windows to the outside that brought in fresh air, and instead chose to broadcast the loud music and screaming through the rest of the facility.

Below is my complaint to DOJ and request for accommodation to the YMCA of Orange County, both of which were denied. These parties theated sound sensitivity and sensory processing disorder as though it were a “comfort” issue, rather than health issue.

Brain centers involved in SPD or sensory processing disorder, courtesy of UCSF
Brain centers involved in SPD or sensory processing disorder, courtesy of UCSF

A large segment of the U.S. population suffers from sensory processing disorder as a result of either autism, post TBI, PTSD, ADHD, hydrocephalus, post tumor, post stroke, Parkinson’s Disease, multiple sclerosis, migraine disorder, dementia, Alzheimer’s Disease, and more. Affected individuals become very sensitive to loud/erratic sound, from music, machinery, loud raucious TV commercials, and other types of sound which carries elements which are problematic to affected individuals. The affected Americans account for 15-20 percent of the population. These unhealthful sound levels for many, are often protected by years old standards of the decibel scale & chart below. But, these acceptable limits are coming under fire as I share further below.

Standard decibel chart approved many years ago before much was known about the brain or sensory processing.
Standard decibel chart approved many years ago before much was known about the brain or sensory processing.

The above chart has been coming under fire. OSHA, the primary authority over unhealthful sound in the workplace, still agrees with the more liberable interpretation above.

The decibel chart offers some additional insight to how the readings are made. Today mobile apps also provide decibel readings.
The decibel chart offers some additional insight to how the readings are made. Today mobile apps also provide decibel readings.

This next chart illustrates the decibel levels of common machinery.

This decibel chart provides decibel readings from many common machinery.
This decibel chart provides decibel readings from many common machinery.

Now we’re getting a little more current science with this next chart, which factors in reporting by persons exposed to what were thought of as otherwise safe decibel levels. And none of this yet takes into consideration the loss of sensory processing function by persons with neurological injury and disorders, and related SPD. When affected individuals are unable to tolerate these sound/noise levels, that raises ACCESSIBILITY to public and private facilities. Such facilities would include health clubs, restaurants, night clubs, churches, schools, malls, art & music venues and events, fairs, parks, and the like.

Study of group response to decibel levels otherwise considered safe by the decibel scale.
Study of group response to decibel levels otherwise considered safe by the decibel scale.

The image below illustrates the critical brain areas in volved in sensory processing.

Drumming and the Brain.diagram

In 2016, technology has made decibel meters available as mobile phone apps. I use the Smart Tools decibel app. However, what is needed is an app and new sound standard to measure the EQ mix of sound and its likely effect on sound processing. Such data would then lower the effective healthful range of sound.

Choose the right decibel app.
Chosing the right mHealth App can be confusing.

In individuals such as myself, I will have good days and bad days, where my sound intolerance can vary and leave me in a pickle if I ignore the early warning signs. As an affected individual, you need to be aware at any given time of the status of your sensory intolerance, so you can make your optional adjustments as needed. However, there still needs to be new efforts in mitigating the hap-hazard broadcast of sound and noise as so many people are effected, with many more becoming affected who aren’t aware.

As for regulatory actions against noise, the only one that comes to mind is Congress 2012 ruling on the CALM Act – intended to prevent volume raising of TV commercials. But nothing has changed. Obnoxiously loud and ridiculous TV commercials continue on almost all channels. And on radio too. While the science in support of sensory processing disorder and affected neurological disorders exists, the U.S. government and DOJ have acted to deny the science, accommodations, and disability rights protections, while advocating for bizarre new and usual protections for special interests groups. I challenge those who deny this, to play such sounds at an official’s or company office. You will likely be thrown out! So WHY is this exposure OK for the general public? I discuss this in more detail in my 2015 blog on Tips and Information on sound related Sensory Processing Disorder below.

New sound standards and measurements must occur for there to be progress. There first needs to be a revision to current safe decibel scale, to revise it to reflect the health needs of persons with SPD disorders. Next, I am advocating a NEW decibel scale to include a “sound processing component” to account for how the human brain processes sound. Examples of difficult sounds are machinery with fast unbroken patterns, TV & radio commercials where a person is talking fast or screaming with music playing at full volume, and music with people screaming and yelling.

Cognitive Accessibility in SPDs.Hulk Destroys Tree Shredder
Cognitive Accessibility in SPDs.Hulk Destroys Tree Shredder

Since this blog was authored in 2013, I have added a new web page of information for sensory processing disorders and cognitive disabilities at CognitiveAccessibility.org, as well as several new blogs which I discuss below.

Cognitive Accessibility.org

In 2015, I authored this important blog on tips and new information on sound related sensory processing disorder, or SPD, which includes updated supporting blogs and web content on this important subject. I am hoping to find the time and energy to build a complete web site for CognitiveAccessibility.org to advocate and share science on sensory processing disorder and cognitive disabilities. In this blog below, I also share some of my efforts with drumming and drum circles that can raise one’s level of intolerance, and improve over well being.

Tips & Information on Sound related Sensory Processing Disorder (SPD)

Drumming Therapy helps Children with Autism, ADHD, and ADD with Focus and Initiation of Action.
Drumming Therapy helps Children with Autism, ADHD, and ADD with Focus and Initiation of Action.

We have supporting science. Now we simply need to connect it to protections and managing in everyday living thru accommodations, technology, and awareness.

Earlier in 2002, I undertook an important study on sensory processing disorder, which is also discussed in the above updated blog:

 2002 Study in Support of Sound related Sensory Processing Disorder 

If you would like me to speak on my efforts with sensory processing disorder, workplace drumming or therapeutic drumming, please contact me via the information below. Feel free to CLICK and SAVE my contact JPEG card.

Stephen Dolle
Neuroscientist & Drum Circle Facilitator
Dolle Communications
Email: contact[at]dollecommunications[dot]com
Tel. (949) 642-4592

Contact Stephen Dolle
Contact Stephen Dolle