OK. This Thursday Sept. 24, 2015 I will feature two drumming workshops for hydrocephalus to address balance, cognition, and movement at the NHF Patient Power conference at the Sheraton Park Hotel in Anaheim, CA. SEE registration info in the flyer. The workshops are free. But there’s a $50 conference fee.
Notre Dame Drumline Friday Afternoon Drummers Circle
I am offering to organize a “DRUM OFF FOR HYDROCEPHALUS” and have it VIDEOTAPED and posted on YouTube. Then, I’d be looking for others around the world affected by hydrocephalus, or interested in helping the cause, to organize their own drum circle with instruments of their culture and region, and post a video of their DRUM-OFF on YouTube – so we may have an international conversation on hydrocephalus. I’ve enclosed the video of the Notre Dame drum off for breast cancer as an example.
I had hoped to do this at the 2015 NHF Conference on Sept. 24th or 25th in Anaheim, CA. But I’m informed the schedule cannot fit it in. We have hydrocephalus groups around the world, and in remote places like Nigeria. I’d love to involve our global “hydro brothers & sisters” in a global “drum off for hydrocephalus.” I envision it as a bit like “Playing for Change” too. And if someone wanted to edit some of the drum segments and create one master song, I’d be very excited for that.
Along with the Drum-off for Hydrocephalus, I’d like to also feature the web site HydroPowered.org – which I created two years ago to further hydrocephalus awareness, and to allow those affected by hydrocephalus to come together to share art, technology, super hero stories, and fun stuff separate from their medical stories.
I have personally been living with the disorder hydrocephalus since 1992, and I would be participating in this as organizer, drummer, facilitator, and affected patient. As a patient advocate, I’ve been involved in advocacy, public policy, and the development of mHealth technology hydrocephalus. Still today it remains complicated by a lack of medical research and innovation in new treatments, CNS shunt and diagnostic technology, and awareness.
So I need an alternative 2015 venue to hold the Drum-off for Hydrocephalus if I want it done this year. I have enough instruments for 75-100 people, though we ideally only need 30-50 playing. And I will invite 10 or so experienced drummers to help in supporting the drumming. I need to have someone be responsible for videotaping the performance, and perhaps some interviews. I and others I know have video cameras, or even a phone camera might do. But editing the video takes some skill. I can only do basic editing for posting on YouTube. I will also need to have a banner made (VistaPrint) saying “Hydrocephalus Drum-Off, Orange County, CA.” And this can be displayed with the video on YouTube. Once I have a date and location selected, I can post updates here and on http://www.HydroPowered.org site and Facebook group.
I will still be offering two drumming workshops at the National Hydrocephalus Foundation PATIENT POWER conference on Sept. 24th 2015. This would allow individuals and families affected by hydrocephalus to come together and experience the POWER of the drum, and the POWER of connectedness for hydrocephalus.
Below, is a video from a drum circle I put on in 2012 for Young Onset Parkinson’s Disease, and it was part of the 2012 Young Onset Parkinson’s Conference in Orange County, CA.
OC Conference 2012 030.MOV
Hydrocephalus effects about 1 in 1000 infants & young children, and occurs in seniors as the disorder NPH (normal pressure hydrocephalus), and it also occurs to others following head trauma, hemorage, tumor, cyst, and often occurs secondary to spina bifida, Dandy-Walker, Arnold-Chiari, and meningitis. In children, it is the most commonly performed neurosurgical procedure. It poses numerous diagnostic challenges to physicians, families, and those living with it. Hydrocephalus is treated the same around the world, mostly by implanting a CNS shunt. So, a mHealth mobile or software app would help individuals in the U.S. as well as developing countries like Africa & S. America.
In developing countries, hydrocephalus is even more tragic and fatal. Doctors without borders and other organizations, often travel to developing countries to perform initial surgeries. But since shunt failure is a common occurance, follow up diagnostics and availability to corrective surgery presents additional challenges. The availability of a mobile software app to collect and document developing patient status information would help save lives and minimize shunt complications. A diagnostic mobile app could offer early critical diagnostic information on device function and patient status.
The purpose of the “Hydrocephalus Drum-Off” is to raise awareness of hydrocephalus, and to help with fundraising and funding of hydrocephalus research in the U.S. and worldwide.
Have you ever viewed the Internet as a big DRUM CIRCLE? Think again.
In this TED talk, Sir Tim Berners-Lee, the inventor of the Internet gives his view of a world-wide & open Internet, with free and open participation on the web. I’ll take the Internet a step further, and equate it as one massive “drum circle,” where each user freely makes their own contribution, and then the whole is more than the sum of the individual parts. Some of the TED Talk comments here support my reasoning. Still others describe the Internet further as an integral part of the “noosphere,” the collective thought of all people on Earth.
Welcome to my NPH and Hydrocephalus Shunt Monitoring Services
My name is Stephen Dolle and I am a neuroscience researcherand medical (shunt) device consultantfor the disorder, hydrocephalus. While my Test Test is yet to be made into a mobile app (few apps for chronic disorders are available today), I provide FREE forms & instructions that patients and families can use. Or, you can pay me to guide you thru the monitoring process, where I can also write up diagnostic reports for your doctors. My fees for this are $125/hour. More information is also available on my web site regarding consulting and monitoring at hydrocephalus treatment & forms. These forms are a great way to keep track of your hydrocephalus history of complaints. Below, I discuss what the monitoring forms and user instructions do, and share some of my patient’s monitoring reports.
I became scientifically involved in CNS shuntsand shunt monitoringin 1994, several years after a brain injury and onset of hydrocephalus. I had performed shuntograms and cisternograms for hydrocephalus as a nuclear medicine technologistfrom 1976-1992 before succumbing to the condition myself. So I was quite familiar with hydrocephalus. But it was two years after my own onset of hydrocephalus with a slew of all too common complications, that I became scientifically involved first as an FDA patient advocate, and eventually, as inventor of the DiaCeph Test– an mHealth app that was to run on a PDA and monitor hydrocephalus as early as 1999.
From 1999-2003, I worked with my start-up company, DiaCeph, Inc., developing the concept and trying to raise funds for development. I continued some FDA patient advocacy thru 2007, but eventually moved on into other interests in the neurosciences, most notably, putting on drumming events and drumming for the brain workshops. I continued to stay abreast of CNS shunt technology. And in 2009, I began providing NPH hydrocephalus shunt monitoring and patient consults. Information about these services can be found via the link below.
My drumming workshops became very successful. In Sept. 2015, I put on two drumming workshops and proposed a “Drum-Off for Hydrocephalus” at the National Hydrocephalus Foundation’s PATIENT POWER Conferencein Anaheim, California. Feel free to speak to Debbi Fields as to the success of these drum circles.
Below are my July 2016 updated DiaCeph NPH & hydrocephalus monitoring forms and instructions. They are also pictured below as images. New to this series, is a historical flow chart (2nd below) for retrospectively plotting hydrocephalus complaint levels vs shunt opening pressures for any period from a few months up to 10 or 15 years. The instructions for how to do this are included in the back of my July 2016 DiaCeph NPH Hydrocephalus Monitoring Instructions. You are free to download and use these forms. These are also available on my SlideShare.net – SEE further below. Or, you may download from my web site (once I’ve updated it there) hydrocephalus treatment & forms.This is a good way to keep track of your hydrocephalus history of complaints.
DiaCeph Test MONITORING INSTRUCTIONS
DiaCeph Test MONITORING FORM
DiaCeph Test FLOW CHART
Below are two sample patient reports from hydrocephalus consults I’ve done over the last 7 years. I have permission to host & share these two patient reports so that others affected by hydrocephalus can learn of these new methods in hydrocephalus monitoring.
In the first report, the patient collected 2 weeks of monitoring datavia a journal I provided him, and then returned the completed journal via Fed-Ex. From this data, I created ICP graphs using the Microsoft Excelprogram. And I then interpreted the graphsand wrote up a 15 page reportfor he and his doctors.
In the second report, I reviewed an NPH patient’s CT and MRI brain scansand medical history for signs of shunt malfunction, aging, and brain atrophy. I then wrote up a reportfor the patient, and a second reportfor his physician.
I provide these consults as a medical (shunt) device consultant, mHealth designer, and former imaging consultant. These two reports are as follows:
NPH DiaCeph Monitoring Report #1 on SlideShare.net
As many of you might expect, I almost always have percussion instruments with me, even while on vacation. When I traveled to Northern Michigan in 2012, I brought the above claves, shaker eggs, a cylinder shaker, woodpecker, gongo bell, flute, and thunder tube. I travel with these should I be asked to entertain or do a drumming therapy session. This request came from a friend of the family for an 11-yr old girl with cerebral palsy and autism from a chromosomal defect. The child was quite challenged and could not walk or talk, and suffered from restlessness and difficulty sleeping.
The Patient Workup
In preparing for my sessions, I perform a brief patient workup that consist of speaking to the parent in the presence of the child – to get the relevant patient history and to let each see me speaking in the presence of the other – which establishes permission. I am experienced in doing clinical workups from my prior nuclear medicine work and current hydrocephalus consults and drumming work. All together, I have 17 years of clinical workup experience as a nuclear medicine technologist(10 years with my company Certified Nuclear Imaging), 15-20 years hydrocephalus and medical device consulting, more than 10 years in drumming, and 10+ years earlier experience coaching youth soccer and baseball where some of my kids had speacial needs
Next, I introduced myself and spoke directly to Eliza, the eleven year old child in this session. I wanted to assess her present state of mind and willingness to work with me- which was positive. I assess the eyes, body movements, and listen to any verbal responses to any nervousness or physical complaints that might interfere with the session. It is important to know any issues that might limit the session – so I can ideally adjust ahead of this. I shared with her mother that I would keep the instrument play simple and not too loud, and start simple and increase stimulation and complexity as long as she was agreeable and engaging. As the therapist, I must continually observe her engagement and adjust my interactions accordingly.
Sensory Processing Disorder
Most all children with autism also suffer from sensory processing disorder (SPD), as do many with hydrocephalus, ADHD, PTSD, Parkinson’s, post TBI and the like. IN SPD, the individual will become easily over sensatized to sound, light, motion, or scents. Sound is the most common, but lights and colors are often an issue too. The list of accommodations for individuals with SPD as a medical challenge vary, but now fall under “cognitive accessibility,” which medically and legally defines the neurologic functional needs of the individual. I have become increasingly involved in cognitive accessibility over the last 5 years.
As I sat down next to Eliza, I observed her to be drooling, a bit anxious but also curious about what I was about to do. She was cooperative. My approach is to be calm and assuring. In these sessions where sensory processing disorder is present, sound, color, my voice, and movements become a critical part of the music therapy session. I maintain my attentiveness to her responses.
Color, Movement, and Music
I began by playing a simple 1-2 beat on my wooden claves, and it immediately drew her attention. I followed this up with one shaker egg, and then two, and she responded with giggles and excitement the more I played. With the colored egg shakers, it was hard to differentiate how much of her response was due to the egg color and motion versus sound from the eggs. Then I played the cylinder shaker, which can be loud if not careful, and I got more positive response from her. Next, I played the woodpecker and shaker together, and she went bananas! Yes everyone likes the wood pecker. By this time, she had been awaiting and anticipating my every movement and instrument sound. It was as much fun for me as it was for her. She became a terrific student and fan!
Then I played the Remo thunder tube. And she became so excited, she reached out and grabed it. Her mother said she couldn’t hold things in her hands. But she pinned the thunder tube between her right hand and lap, and resisted a bit as I reached to take it and play again. However, at no time did she play any of the instruments. I tried to get her to hold a shaker egg, but without success. Eventually she held the thunder tube almost entirely in her hand. My session lasted almost 40 minutes, and I was very pleased at her attentiveness, willingness to engage me, and willingness to challenge her own limitations.
Music and the Brain
I believe the favorable response and attentiveness during this treatment was due to the child’s attentiveness to engage me and the sounds and colors of the instruments. By the end of the session, she had remarkable focus and level of excitement, and briefly drank from a bottle. And then stood up by holding onto the porch railing, and stretched in excitement. I explained to her mother that these type of therapies might be helpful in her walking or talking someday. The family has a piano where she and the other kids will gather around and play together. I’m told she likes the bass noteson the piano. So I suspected she’d love the sound of a bass drum (I did not have on this trip). I would be curious as to what an EEG would show of her brain waves since she craved active sounds. She’d also been to a Blue Man showwhere the performers made her part of the show.
Music & Drumming Therapy as Healing Arts
EMDR therapy is one related sound and movement therapy that comes to mind and is used in PTSD and sensory processing disorders to desensative the individual. I reflected on new EMDR methodsin 2002 when I undertook my sound sensory study with the Boss metronome (discussed further below). As EMDR is also a “healing art,” I’ve shared my blog below on CAM and alternative medicine. It is from 2012. But it’s been updated. It is the first third or so of this blog, where I discuss my past mind-body methods, that I think is relevant to music and drumming therapytoday. In these regards, I believe the benefits come from more than sound and interaction, they come from the authencity and “intent” of the therapists. And this is widely true thoughout the various alternative medicinemodalities. There must be a BUY INby the patient! The trust and optimism causes a release of neurochemicals in the brain and change in cell structurethroughtout the body.
Drumming for the Brain & its Effect on Brain Wave States
In EMDR Therapy, the therapists determines what to say and how to integrate sound and visual cues. It has been discovered via Parkinson’s Disease work that happy and relaxing activities please the brain and aid in the release of endorphins, particularly dopamine. Dopamine levels often run low in PD. I am uncertain as to the effect seen in cerebral palsyand autism. But I observed in my session with this child that she had a strong affinity for rapid stimulation thru musical toys, also confirmed by her mother.
I am unsure whether Eliza’s low functioning state kept her brain wavesin a lowered state, i.e. alpha. But she craved rapid stimulation. I felt it critical that I engage her in a step-by-step method of rhythmic movements and sound so as not to overstimulate her, and maintain her focus and level of engagement. Most of what I played were slower rhythms. The most up tempo I played was a moderate samba on the bell and clave. And this was only one session. I didn’t have opportunity to stimulate her on multiple levels. And at the end of this single session, I could see she was tired.
I suspect a djembe drum or bass drum might also captivate her. I’ve observed a young girl with marked autismat the HB pier who will sit right in front of the large fast playing djembes. I’ve been concerned it may not be healthy for a child at her level, though she appears drawn to the stimulation. Children have lower brain wavesuntil their teens. So any artificial attempt to speed them up could have adverse consequences. This is also why caffeine and sugar act differently in children.
The next day Eliza’s mother contacted me to share that she slept thru the night and seemed remarkably calmer after the drumming session. This experience is one of the reasons WHY I became involved in drumming. It has also helped me personally in managing many of my own challenges with hydrocephalus. Further below, I discuss some of the contraindications and research with sensory processing disorder, including, a blog with audio examplesfrom YouTube of problematic machinery noise.
I have been involved in drumming therapysince before I became involved in drumming in 2004. It was my 2002 sound sensory processing studywith the Boss metronome which were my orginal efforts in sound patterning. After becoming involved in drumming in 2004, my interests were split between play and research. I authored this first web page on drumming entitled, What is a Drum Circle, which discusses some of the science plus my own views on drumming, or drum circles.
In 2005, I put on my very first drumming for the brain workshopat the High Hopes Head Injurycenter in Tustin, CA. From there, I began to put on a wide array of drumming for health events, though these were mostly for disorders of the brain and central nervous system. This drumming for wellness page below features some of these efforts.
Drumming therapy is finding success today in 1:1 and group sessions with ADHD, ADD, autism, hydrocephalus, Parkinson’s Disease, post TBI, aging, and more. What is critical in all of this is that the individual and group ENGAGE!
The information on my above drumming web pages discusss how you can obtain a drumming event, workshop, or therapy session with me.
I created the above Cognitive Neuroscienceweb page to encompass my neurosciences efforts from hydrocephalus to mHealth, sensory processing disorder, drumming, drumming therapy, cognitive accessibility, and related outreach. Like so many sites and pages, it is a work in progress to keep it up to date.
Generally speaking, decibel appsonly help you with loudness or decibel levelof surrounding sound before it might become problematic for you, your child, or parent. Unfortunately, the triggering aspect of sound, is more in its pattern and pitch than loudness, and is why I undertook this next study in 2002 on sound and sensory processing – to understand the types and effects of sound exposure on persons with hydrocephalus who also have SPD. I feel the types of SPD challenges I evaluated in hydrocephalus is similar to that of autism and other neurological and learning disorders.
As for balance, coordination, fitness, and sensory processing challenges, it doesn’t get much better than shooting baskets– which I began doing therapeutically in 2008. I eventually met up with another shooter, Al Massip, and our on court discussions turned to philosophy and brain science. One day, I posed the question, Where does the Shot come From? And this became a focal point of our shooting for several years, until 2015 when I published this in-depth blog that now attracts 500+ monthly visitors from all over the world. This suggests a lot of people are trying to answer this question. The answer may be in part mystical too. On a therapeutic level, my basketball and drumming with basketball methods are very helpful for a number of neurological disdordersand brain health.
The final supporting presentation below was from my power point as part of a talk I delivered at Wayne State University on drumming and rhythm methods in STEM3 education. I discuss a range of implications from language and learning, to speaking tempo and entrainment of teacher/student, to health and sound sensory processing and classroom noise considerations.
From my 20+ years in living with hydrocephalus, research and writing about the brain, a lifetime of playing music, 17 years in nuclear medicine, and coach on 20 little league soccer and baseball teams, I truly understand how drumming helps others.
Contact me if you are interested in drumming therapy sessions, consults, or having me speak at an event. The best method of contact is via email.
Stephen Dolle Neuroscientist, mHealth Inventor & Drum Circle Facilitator Email: contact[at]dollecommunications[dot]com DolleCommunications.com