Mobile Apps and Accommodations for Living with Hydrocephalus

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.

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 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.

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 an mHealth 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.

Dolle Communications – 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 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

Information on 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

Fundraising for Hydrocephalus: Follow the Creators of the Ice Bucket Challenge

This morning I received my usual TED talk email and was literally brought to tears watching the TED presentation by Nancy Frates, the mother of Pete Frates, who came down with ALS a couple of years ago. It was Pete and Nancy and their family who put together the ALS campaign that included the ALS Ice Bucket Challenge. It then became a smash hit this past Summer. In her TED talk, Nancy details how it all began with Pete’s diagnosis, Pete saying he wanted to get this in front of philanthropists such as Bill Gates, and to dividing up the various responsibilities of their campaign.

I earlier wrote about the ALS Ice Bucket Challenge fundraising campaign as it was becoming a Summer sensation. My interest is partly in that I’ve been involved in fundraising, but more out of my personal interests and challenges in living with the disorder, hydrocephalus, since 1992. The effects from my hydrocephalus have been considerable. I lost all of my work and related skills after an auto accident that caused it. And it took 16 years, 7 surgeries, and much of my own making to finally get a CNS shunt to do what they are supposed to do – properly clear CSF fluid & pressure from my brain. Out of survival, like the Frates did, I became involved in advocacy for hydrocephalus, and this led me to efforts with the Food & Drug Administration (FDA) and their oversight of problems with CNS shunts, which are the medical devices principally used in the treatment of hydrocephalus. In 1996, I learned of a leading CNS shunt having specific problems that I suspected was connected to my poor health, and I reported this to the Food & Drug Administration. Then I learned it was likely responsible for thousands of additional surgeries and poor outcomes over 10 plus years. Some in the field knew about this, but nothing was done to change it. So I petitioned the FDA. It took me over a year to gather the studies and assemble it all. And I did this all in spite of considerable health & cognitive challenges.

In 1998, FDA upheld this petition. But what followed was dishonest and troubling, and led to many of the ongoing failures in CNS shunt safety and progress in hydrocephalus care. Yet in 1997, in the two-year interim period it took for FDA to issue a ruling on my petition, I designed & patented a home software method to monitor hydrocephalus (the DiaCeph Test) and address many of these CNS shunt issues. It was a program to run on a custom PDA device. I presented it at the 1999 STAMP Conference in Bethesda, MD. But FDA, and much of the medical industry, scoffed at my efforts. Some of this correspondence is still on my main web site. At that time, few neurosurgeons believed in collecting & sharing medical data on PDAs or over the Internet. I suspect their sentiments are different today. I was also outspoken on the need for progress in hydrocephalus care. And it led to the Hydrocephalus Association, several partnering shunt manufacturers, and their key board neurosurgeons, “blackballing” me of sorts in the field. I was responsible for the 1999 STAMP Conference. But I ceased much of my advocacy after this, and by 2003 had moved on to other interests in the neurosciences. Meanwhile, shunt after shunt after shunt was introduced with problems, including, my current Certas valve which was recalled last year. My 1997 design of the DiaCeph Test would have been one of the earliest mobile apps. Today, it sits on a shelf.

Now when you watch Nancy Frates’ TED talk, you can see her passion, and hear her talk about confronting complacency, and poor colaboration on ALS research. She also instituted an “action plan” right from the start. I also earlier wrote about the ALS Ice Bucket Challenge, and cited the amazing efforts by Christopher Reeve on behalf of spinal cord injury. And there is one very very important element of their respective campaigns: THEY DID NOT COZY UP TO INDUSTRY & COW TOW TO THEIR WHIMS! They told it the way it was, engaged the masses, and industry then followed their lead.

So for those of you who truly want to bring progress to the care & treatment of hydrocephalus, stop cow-towing to industry and be unique and create your own fundraising and awareness campaigns. For me, last year I created the cool site http://www.HydroPowered.org for sharing fun & art on hydrocephalus, and for fundraising when the opportunity presents. Be unique, sincere, passionate, and organized.

Enjoy Nancy Frates TED talk.

Fun Web Site for Hydrocephalus features Super-Heroes and Art

Tribute to EMI Records and Godfrey Houndsfield for invention of the CT Scanner
Tribute to EMI Records and Godfrey Houndsfield for invention of the CT Scanner

In 2013, I obtained the HydroPowered.org domain and created a basic web site for sharing of fun, art, and culture on a technology platform for individuals and families affected by hydrocephalus. The image at top was created from one of my MRI brain scans, with editing from the Pic Say Pro app. I then added a tribute to Godfrey Houndsfield for his engineering vision, and EMI Labs (a division of EMI Records), for funding his project that led to the invention of the CT scanner – arguably the greatest medical invention we have to date.

I do all of this on a shoe-string budget. Still, I feel I could offer those affected by hydrocephalus a new and fun way to connect on art and fun topics.

I acquired the HydroPowered.org web site by researching domains that were available with the word “hydro,” short for hydrocephalus, which means water on the brain.

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

I created the above “blue swirl” image as my first logo from one of my MRI brain scans using the Pic Say Pro mobile app. Then, on my web site and Facebook group, I added additional art with the water or “hydro” theme, including, the Schick Hydro razor. The links below go to my web site and Facebook pages of “hydro” art.

Facebook “Hydro” Art

“Hydro” Art and Designs for Hydrocephalus on HydroPowered.org

Hydrocephalus Awareness Month 2014
Hydrocephalus Awareness Month 2014

I am hoping to create fun and cool art for hydrocephalus, separate from the disabiling realities of the condition. This came together one evening in May 2013, though my original idea started back at a hydrocephalus conference in the year 2000. Since 2013, I’ve added HydroPowered art and super-hero stories, and am looking to add more stories and characters.

Hydrocephalus HydroPowered Super-Heroes

Spiderman Super Hero for Hydrocephalus stories at HydroPowered.org
Spiderman Super Hero for Hydrocephalus stories at HydroPowered.org

I want to expand on the “super-hero” theme. I’ve written a few tie-in super hero stories on HydroPowered.org. I actually envision a series of HydroPowered super hero characters. I’ve also created a Facebook Fan Page so other “hydros” (that’s a term we often call each other) can post/share their art and stories.

I continue to brain storm ideas to get this out to the masses without having to spend a lot of money or time. I have made custom T-shirts and polo shirts at Vistaprint online. I’d even be willing to try a “daring PR stunt” if that would bring awareness to this cause.

Drumming workshop for balance and movement challenges in living with hydrocephalus
Drumming workshop for balance and movement challenges in living with hydrocephalus

On Thursday Sept. 24, 2015, I along with HydroPowered.org 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.

In addition, I am trying to put together a “Drum-off for Hydrocephalus” to help raise awareness and funding for hydrocephalus.

Drum-off for Hydrocephalus

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.

In July 2015, I put together a photo collage with my NFL lookalike, JJ Watt, of the Houston Texans. Check out the similarities below of JJ to my photos at his age.

Photo look-alike collage of Stephen Dolle & JJ Watt of the Houston Texans
Photo look-alike collage of Stephen Dolle & JJ Watt of the Houston Texans

I am hoping this look-alike photo collage might create some social network interest in this cause. It was two years ago that I realized JJ & I look alike like. And he seems a lot like me too, with both of us growing up in the Mid-West. So, for Throwback Thursday, I put together this photo collage, and put it on several of the social platforms, hoping to bring attention to hydrocephalus and my efforts with HydroPowered.

Since 1985, I’ve provided quite a bit of outreach & CSR to Orange County area organizations. During the 1980s, my outreach and fundraising efforts were in little baseball, AYSO soccer, the Costa Mesa Chamber of Commerce, Hoag Memorial Hospital, community theatre, and arts in Costa Mesa and Laguna Beach. But since the late 1990s, my focus has shifted to hydrocephalus, and a variety of community causes I’ve undertaken with drumming, or drum circles. I also headed up the drumming Meetup, Orange County Drum Circle.

Stephen Dolle in Washington, D.C. for 1999 STAMP Conference
Stephen Dolle in Washington, D.C. for 1999 STAMP Conference

Since 1995, I’ve been a patient advocate for hydrocephalus, and have been answering patient, medical, CNS shunt, and FDA guidan questions on hydrocephalus. In 2009, I began offering consults in monitoring, since my DiaCeph Test for monitoring never became available. For several years, I was also a board member for the National Hydrocephalus Foundation, and helped with PR and fundraising.

In drum circle facilitation, I own enough instruments to put on drum circles for groups as large as 100 people. And I have facilitated groups as large as 250 drummers. I’ve been organizing and facilitating these drum circles over the last 7-8 years in spite of my own health challenges with hydrocephalus and CNS shunt brain surgeries from a 1992 auto accident, which now total 12 surgeries. But, it hasn’t stopped me from giving back, from being involved in CSR and being a pivitol part of Orange County area outreach.  Come Sept. 2015, I’ll be putting on two drum circles at the National Hydrocephalus Foundation conference in Anaheim, CA.

Hydrocephalus Awareness Month 2014
Hydrocephalus Awareness Month 2014
Stephen Dolle receives award at Costa Mesa Chamber event.
Stephen Dolle receives award at Costa Mesa Chamber event.

Back in the 1980s for several years, I served as an independent consultant and helped in sponsorship of a number of area sporting and community events, including, the 1992 Great American Race. 1998 was my first big fundraising endeavor after my injury, where I headed up field sponsorship for the Foothill High School baseball program. Still today, I feel I understand cause marketing, though I always appreciate others’ feedback. If I had not gotten in an auto accident in 1992 and developed hydrocephalus, my plan was to leave health care completely and transition into sports & entertainment agent services.

Drumming for Wellness at the UCI Women's Wellness Day
Drumming for Wellness at the UCI Women’s Wellness Day

There comes a time when even the best of us become recipients of outreach. Since 2012, I’ve been overwhelmed by complications with my hydrocephalus. In March 2015, this led me to I put my own case study and complications up on my blog, knowing all too well I could face scrutiny for it. I felt like I had no choice. I was between a rock and a hard spot, struggling with my health, and struggling to work and take care of myself. You can find it under March 2015 topics.

Pain management and mindfulness in Shunt Revision
Pain management and mindfulness in Shunt Revision

I’d like HydroPowered.org to be a different take on hydrocephalus outreach, more about fun, cool, a mix of art, technology, and culture – with a super-hero theme too. I felt the platform might be helpful in fundraisers too much as the 2014 Summer ALS ICE Bucket Challenge that became a mainstream hit.

Since 2013, I have been brain storming and scouring the web for HydroPowered art and photos. It now includes hydropowered racing boats, monster waves, hydropowered damns, the Schick Hydro razor, and basketball. I’m an avid shooter and have even written a special blog on my insights into basketball.

Sports vs. Brain Science of Basketball

Your Basketball Spirit Guide may help more than you know during Shooting
Your Basketball Spirit Guide may help more than you know during Shooting

The plight of hydrocephalus, the stories, the data, and outcomes remain troubling today. It is the leading neurosurgical procedure in children, and affects individuals from in utero to very late in life. CNS shunts, which first came into use as its primary means of treatment in the 1950s, are still standard treatment today. Outcomes are often followed by disability, many numerous shunt malfunctions, and corrective surgeries. The average life of a shunt today is still about 5 years. Several leading programmable shunts in recent years have also been plagued with bizarre programming failures that added to the chaos. In fact, my own shunt implanted less than two years ago, has already been recalled. So hydrocephalus really needs a make-over!

As for famous individuals with hydrocephalus, the Reverand Billy Graham lived with NPH, a form of hydrocephalus, and a shunt for the last 8-10 years of his life. Rock & Roll guitarist, Dick Wagner of Alice Cooper, who passed away this past July, lived with hydrocephalus for several years. And former San Francisco 49ers player, George Visger, developed hydrocephalus after a series of concussions from football.

Incredible Hulk Inspires Kids and others with Hydrocephalus
Incredible Hulk Inspires Kids and others with Hydrocephalus
The DiaCeph mobile phone app would improve greatly improve hydrocephalus care Worldwide. But the U.S. lags in mHealth development.
Android DiaCeph App for Hydrocephalus would improve hydrocephalus care worldwide

As a neuroscientist who provides hydrocephalus monitoring and consults to families in this space, I am adament that CNS shunt technology, and all of its FDA regulations, are in need of an overhaul. We need to change the dynamics and philosophy of the medical field in hydrocephalus care, from “can’t do” to “yes, we will do!” Today, hydrocephalus care & CNS shunt technology remains dominated by a handful of old guard philosophy medical companies and physicians who have resisted the kind of progress we need for many years. Today we need more free-thinkers, more doers! More of an Apple or Google mindset. The same place, same thing, is not producing the kind of advances we need.

I also realize hydrocephalus research is in need of funding, and I believe the HydroPowered platform can play a pivitol role in this going forward. I can compare our plight a bit similar to that of spinal cord injury (SPI) at thetime actor Christopher Reeves became paralyzed. In his case, he almost single-handedly changed the dynamics & funding of SCI. In his brilliant campaign, he initially “called out” the old guard of SCI work that was holding back progress, and then went on to raise money & create progress in SCI treatment that’s not really been seen in any other disorder outside of AIDs.

For several years back in the 1990s, Christopher Reeves had been one of the highest paid speakers in the world, with both political parties vying for him to appear at their conventions. Those were “wow” moments in PR and cause marketing! Today, football players living with SCI, owe vastly improved outcomes to the dynamic efforts of Christopher Reeves.

Below, is my HydroPowered web site & Facebook links. Take a moment to read over it.

HydroPowered.org

HydroPowered Facebook Group

SpiderMan Movie Trailer

Contact me if you would like to speak with me. Feel free to CLICK and SAVE my contact JPEG card.

Contact Stephen Dolle
Contact Stephen Dolle

 

 

 

 

 

 

 

 

Stephen Dolle
Dolle Communications
Email: contact [at] dollecommunications.com
Tel. (949) 6424592
Dolle Communications
HydroPowered.org

Stephen Dolle Headshot in a Suit
Stephen Dolle Headshot in a Suit

New HydroPowered.org Web Site to enable Open Source Sharing of Art & Designs for Hydrocephalus

The new HydroPowered.org web site has been updated to enable open source sharing of art & designs for persons & families impacted by hydrocephalus. Together with its HydroPowered.org Facebook group, followers will be able to upload and share their art & designs in an “open source” type setting.
http://www.hydropowered.org/HydroPowered.org.Open Source Art & Design

“Art can be posted or downloaded from the Facebook site, placed on clothing, or made into stand-alone pieces of art,” says Stephen Dolle, HydroPowered.org’s creator. “Technology can be designs of anything from shunt devices to mobile apps, and there’s no requirement it be related to hydrocephalus, only, the person/family submitting must be impacted by hydrocephalus.”

The second goal or mission, Dolle says, is to raise $100M for new “open source” technology solutions in the care and treatment of hydrocephalus. He says hydrocephalus today remains 25 years behind in comparative technological advances, and he believes this open source concept is the best way to move forward with innovation. Hydrocephalus is also the leading neurosurgical condition in children. The current status of surgical outcomes with hydrocephalus today with CNS shunts is entirely unacceptable! With these funds and new open source initiatives, we believe we can forever change the care and treatment of hydrocephalus.

Here also is the link to the group on Facebook:
https://www.facebook.com/hydropowered.org

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

Contact Dolle Communications
Contact Dolle Communications

Orange County is Fast Becoming a Boon for Tech Startups

Last night, I attended Start-up Events Orange County’s event, Women in Tech Part 2, and was very impressed. I found a great variety of mobile app, gaming, web-enabled, and personal & social tech-ware. There is no doubt the OC is fast becoming a haven for tech startups, of course, with a little help from the big success of the Oculus Rift virtual reality gaming, and their acquisition by Facebook. And these smart girls are really cute too!

Startup Events Orange County

Irvine, CA
1,325 OCpreneurs

Startup Events Orange County is a fluid collective of networks, highly customizable to suit customized events. . .sometimes about startups, sometimes about entrepreneurship, s…

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Wednesday, Jul 22, 2015, 6:00 PM
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I was able to peruse and talk with most all of the exhibitors, some 15-20 up & coming tech startups, that I expect to be around next year. One of the exhibitors, LynxFit, was there with a Google Glass set up for fitness training. Another, Zuul Labs, showcased their 1st art gaming app, Tall Tails, and shared how their using coffee & their new gaming app to save rescued dogs. Another, MotorMood, makes a LED device to go in the rear window of your car to let other drivers know what you’re feeling.

I continue to stay abreast of area tech and frequent several of the tech Meetups. I am still hoping to develop my earlier DiaCeph mHealth test for hydrocephalus as a mobile data app. I’m also offering to consult for groups involved in mHealth, and others involved in assistive cognitive technology and cognitive accessibility. My entire 40 year career has been in tech, from my years in nuclear medicine technology (1975-1992), where I became a guru of sorts and founded my own company, to my design of the DiaCeph Test, and efforts with assistive technology, mobile apps, and now cognitive accessibility. My skills with tech in nuclear medicine were so well established, that my first job out of college I set up a nuclear medicine department from scratch, then taught staff physicians about it.

It was in 1997 (after my brain injury & living with shunt complications), that I designed & patent my DiaCeph test, originally because of hidden issues with my Delta anti-siphon shunt – which I petitioned FDA on in 1996. I was having problems, and nobody would revise me – because there was no diagnostic proof of a shunt problem. I designed DiaCeph in 1997 as a stand-alone PDA app – and I was in fact, one of the earliest people to design a mobile type of app. It just took tech 15 years to catch up with me. Many of the things I wanted to do previously in assistive apps, are now more possible today. And the business model for DiaCeph as a data app is almost completely different today. As a data app, it would still be ahead of most mHealth apps today. My biggest concerns are the costs of coding & development, and getting it done within the restrictions of new FDA guidance.

If I had my caruthers, I’d create “open-source” CNS brain shunts with new features and capabilities, and tell the FDA to go pound sand! Their Phase II and PMA regulations are much to blame for many of the current shunt problems.

Sometime soon I will publish new content on my DiaCeph Test, and content on other brain apps & such I’ve used and can endorse. I only have so much time, and currently have quite a few projects demanding my time. My neurosurgeon, Dr. Muhonen, has also asked if I might be able to create a mobile app or other means to read the setting of programmable shunts. It looks unlikely that it can be done via the phone itself. It would have to include an accessory plug-in or some stand-alone reading mechanism. I’m not sure if you heard, but it was discovered a few weeks ago that my Certas valve suffered a changed setting and may have gone on for 4-5 months undetected. That was fun!

I am still doing my drum circle facilitation work. But I am being much more selective now to better account for my time. I’ve got some new applications & methods in drumming, and will write about them when the time is right. I am pleased to know they are a lot of people doing drumming today because of my efforts.

Here’s a link from one tech startup from the event I expect to use.

http://www.yourkidvid.com/

Stephen

mHealth will Revolutionize Modern HealthCare

Google play-store-logo.mHealth

We are on the verge of revolutionary change in health care delivery in the U.S., of the likes we have not seen in the last 50-75 years. And I believe physicians, the corresponding medical organizations, and the U.S. government are scared to death of these changes – because THEY will lose CONTROL! In fact, I think the U.S. government is more fearful than even of drug trafficking. And this revolution will come via new mHealth technologies & mobile apps.

Clearly, the U.S. government & industry have resisted changes to health care delivery. But mHealth apps will transition control of health care from the clinical setting/utilization review over to the patient as a consumer, and armed with many new customizable apps and combined with the power and offerings of the Internet. These new technologies and capabilities will enable Americans to be healthier, stronger, wealthier, happier, and more independent – and that just scares the crap out of you-know-who! These new technologies would also help make health care spending more transparent, and likely reveal huge amounts of spending wastes. And that too scares the crap out of you-know-who!

FDA and Congress would have us believe that they have been protecting our privacy through legislation such as HIPAA all along. But, I believe this has ever been about protecting our privacy. It’s been about stalling the capabilities and independence that mHealth would bring, and it’s transitioning control from the current clinical setting and utilization review, to a more transparent system that would give patient’s far more control and say so in their care.

With ObamaCare now coming into the fold in 2014, it will be interesting to see how these new features & coverages play into the new mHealth-concentric care model.

ABOUT ME: Began my career in 1976 as a nuclear imaging technologist, founded my own imaging company, and dev’d skills as a medical intuitive in 1981. Today I put on drum circles for the brain, and provide neurological monitoring & consults for the disorder hydrocephalus via my DiaCeph monitoring method I developed back in 1997.

I had also suffered a brain injury and CNS shunt placement in 1992, and have undergone 12 surgeries to date, with 7 of the devices that were used, and failed, not having been reported to FDA! In 1996, I had successfully petitioned FDA on several problem CNS shunt devices, then in 1997 designed & patented the DiaCeph Test, an early mHealth PDA app for hydrocephalus. Since then, I created many different AI methods for cognition & memory, and cognitive accessibility. I am also a writer & speaker. Based out of Newport Beach, California.
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Use of Barometric Pressure Data in Management of Migraine

Migraine headache can get you out of your routine
Migraine headache can get you out of your routine

Use of Barometric Pressure Data in the Management of Migraine

This March 2015 migraine blog below is now my primary blog on this topic. I also give away FREE access codes to the Elecont eWeather HD app:

Weather App Helps Manage Barometric Pressure Related Migraine Headache

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

Migraine and weather related headaches affect some 15% or more of the population. In more recent years, much has been written about the connection between weather patterns and headache, where falling barometric pressure and rising humidity can often trigger migraine headaches, which are “low pressure” headaches characterized by dilated blood vessels in the brain. The most popular over the counter migraine medicine, Excedrin, then combines aspirin or Tylenol with caffeine (as a vasoconstrictor) to combat this medical sequel of dilated blood vessels. But, it is helpful to know during initial onset of a headache, if it in fact is barometric pressure induced so that you choose the right medicine and treatment.

I personally live with the medical condition hydrocephalus, and as a neuroscientist, I provide patient consults, neurological monitoring, advise on the role of technology, and provide drum circle workshops for health & wellness. Still, for me and so many other Americans, migraine headache and weather related triggers, pose regular challenges. So I turn to technology for a solution.

Over the last several years, I have come to use two separate weather sources for obtaining the much needed correlating weather data. They are:

1) http://www.wunderground.com/

2) http://www.elecont.com/ 

Elecont is a high tech mobile phone weather app  It’s $4.99 on Android and $3.99 on Apple stores. I have FREE access codes to download the Android version.

Barometric Pressure Data.March 22.2014.jpg

The barometric pressure data that these sites and apps offer is then extraordinarily useful in monitoring and pain management of migraine headaches, especially in hydrocephalus. I’ve inserted 3 weather data photos here, if they load correctly. They include a jpeg image of barometric pressure up thru 6pm on March 23, 2014, showing a rapid rise in pressure between 8am and 11am, which can trigger a high pressure headache, which would be more unique I think for persons with hydrocephalus. At 11am, I felt it likely was the trigger of that headache on that morning. Also, a 2nd bit of data that was helpful was the rising humidity at 11am, known to also act as a trigger for headache.

I didn’t save the inserted until about 6pm that day, which shows the pressure leveling off by 12 noon. This leveling also corresponded to a leveling off of my headache, though it took 2-3 hours, or around 3pm. I had been noticing over the last several months that I was suffering from headaches often as the barometric pressure was rising. So when I saw the big spike by 11am, I knew I was in for a rough headache day, and adjusted my medication & activity schedule accordingly. I was happy that the pressure leveled off and stayed level for the afternoon, as it allowed my headache to dissipate by 3pm.

More often, migraine will be triggered by “falling” barometric pressure. There is specific diagnostic significance for those who might experience headache during a rising barometric pressure. I can’t advise you here without any supporting medical history. So I recommend you speak to your neurologist or neurosurgeon as to the significance of your pressure correlation.

In hydrocephalus, a headache from rising pressure would indicate either an increased sensitivity to pressure changes from hydrocephalus that is not well arrested after shunting or ETV, and/or during periods of increased intracranial pressure, or ICP. It is conceivable that a headache response from a high pressure weather front might also indicate “shunt malfunction” in hydrocephalus, should you not normally get a headache from rising pressure. what was also significant in my case on this day, is that as soon as the pressure leveled off, so did my headache, though by about two hours. The dissipation with leveling pressure also served to confirm the weather correlation. As I’ve been using this weather data for 3-4 years now, the correlation then served as biofeedback in management experience.

I am working on developing a mobile app for hydrocephalus monitoring, called the DiaCeph Test, which will incorporate weather data in the interface and during monitoring, to correlate and help in management of headache from barometric pressure weather changes. I first applied for patent for my DiaCeph Test way back in 1997, and was considered a visionary for this, and apps did not yet exist. It was going to run as a stand-alone PDA. So, I was one of the earliest pioneers of mobile apps, before they were even possible. Also around that time, scientists at the University of Pittsburgh and Henry Ford Center in Detroit, introduced a software method of monitoring sports concussion, called the Impact Test.

Please contact me if you are interested in helping to develop these neurological apps.

May you ride out your headaches like a surfer thru a wave!

Stephen Dolle
Tel (949) 642-4592
http://www.dollecommunications.com

Hydrocephalus and NPH Monitoring by Stephen Dolle of Dolle Communications

Stephen Dolle, Neuroscientist & Drum Circle Facilitator
Stephen Dolle, Neuroscientist & Drum Circle Facilitator

Welcome to my NPH and Hydrocephalus Shunt Monitoring Services

My name is Stephen Dolle and I am a neuroscience researcher and medical (shunt) device consultant for the disorder, hydrocephalus.

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

I became scientifically involved in CNS shunts and shunt monitoring in 1994, several years after a brain injury and onset of hydrocephalus. I had performed shuntograms and cisternograms for hydrocephalus as a nuclear medicine technologist from 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.

Knowledge is Power
Knowledge is Power

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.

Dolle Communications Web Site – Hydrocephalus Monitoring

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 Conference in 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 5 day 7 marker NPH hydrocephalus shunt monitoring form
Diaceph 5 day 7 marker NPH hydrocephalus shunt monitoring form
Diaceph NPH hydrocephalus historical shunt outcomes flow chart
Diaceph NPH hydrocephalus historical shunt outcomes flow chart

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 data via a journal I provided him, and then returned the completed journal via Fed-Ex. From this data, I created ICP graphs using the Microsoft Excel program. And I then interpreted the graphs and wrote up a 15 page report for he and his doctors.

In the second report, I reviewed an NPH patient’s CT and MRI brain scans and medical history for signs of shunt malfunction, aging, and brain atrophy. I then wrote up a report for the patient, and a second report for 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

 

NPH Consult Report #2 on SlideShare.net

 

Below, are the same (2) DiaCeph Monitoring reports from above, but on my web site as a web page (Report #1), and as PDF files (Reports #1 & #2) for download:

 

NPH DiaCeph Monitoring Report #1 (as web page)

Url address graphic
Url address graphic

NPH DiaCeph Monitoring Report #1 (as PDF file)

DiaCeph Hydrocephalus Monitoring Booklet
DiaCeph Hydrocephalus Monitoring Booklet

NPH Consult Report #2 (as PDF file)

DiaCeph Hydrocephalus Monitoring Booklet
DiaCeph Hydrocephalus Monitoring Booklet

I write about mHealth mobile apps for managing neurological disorders and hydrocephalus. Below is a popular blog on managing migraine with weather apps.

Mobile Apps to help in Management of Weather Related Migraine

The Elecont HD app provides an hour by hour barometric pressure reading that can be used to help manage migraine headache.
The Elecont HD app provides an hour by hour barometric pressure reading that can be used to help manage migraine headache.

This next blog also contains links to many of the mobile apps I have used or recommend for hydrocephalus and related neurological disorders. You will find the links at the bottom of the blog.

Design and Best Use of MHealth Apps

mHealth Apps in Neurology
mHealth Apps in Neurology

Below is a tandem DiaCeph Test – Single ICP Tap study I published in 2003, where my DiaCeph Test monitoring I undertook accurately corroborated ICP readings done by my neurosurgeon.

Dolle Communications Tandem ICP Tap – DiaCeph Test Study

Shunt Illustration for Hydrocephalus
Shunt Illustration for Hydrocephalus

Below is information on my current efforts to make the DiaCeph Test into a mobile data app:

Hydrocephalus Monitoring Test Hopes to be New mHealth App

Below, is airport, TSA assistance, and scanner information on traveling with CNS shunts and cognitive disabilities.

Tips on TSA Airline & Airport Information for Travelors with CNS Shunts

TSA Cares Logo
TSA Cares Logo

Below, are some newer efforts I have undertaken on behalf of accessibility for persons with cognitive disabilities:

Cognitive Accessibility in Hydrocephalus

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

And below, is the home page of my Dolle Communications web site listing my various web pages under the cognitive neurosciences.

Dolle Communications – Cognitive Neuroscience Home Page

Hydrocephalus monitoring, drum circles, and neuroscience solutions by Dolle Communications
Hydrocephalus monitoring, drum circles, and neuroscience solutions by Dolle Communications

Please contact me accordingly. Best method of contact is email. 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
Hydrocephalus Survivor w/ 12 Shunt Revisions
DolleCommunications.com

Contact Stephen Dolle
Contact Stephen Dolle

New Research Touts Benefits of Medical Marijuana in Neurological Disorders

The Domentary series Weeds by Dr. Sanjay Gupta and CNN
The Domentary series Weeds by Dr. Sanjay Gupta and CNN

CNN – Weeds by Dr. Sanjay Gupta

I have provided a brief update on Oct. 31, 2016 to this blog about the CNN TV program Weeds, by Dr. Sanjay Gupta. Please see my update and additional links on this topic further below. Dr. Gupta had presented some compelling medical evidence of some benefits of medical marijuana in neurological and seizure disorders, as well as benefits to those undergoing chemotherapy for treatment of cancer.

In contrast to what many may think, the true medicinal aspect of marijuana, or cannabis, is not in the THC, the component that makes you high. Rather, it’s in the cannabinoids, a substance found both in the plant and as a neurotransmitter in the human brain. However, a rather complex purification process is required to produce the cannabinoids from the marijuana plant, which is produced as an oil for oral consumption.

One of the big challenges with medical cannabis, in my view, is in determining which strains and forms to use for your own medical challenges. This web site below list information on how to select your cannabis strain. And below, is a chart to assist in selecting a strain.

Sensiseeds.com – How to Select the Best Cannabis Strain for your Medical Condition

Weedmaps Medical Marijuana Ailments Cannabinoids Chart
Weedmaps Medical Marijuana Ailments Cannabinoids Chart

The most well known political victims with the use of cannabis in the last several years was Charlotte, a 2 year old girl living with a progressive seizure disorder. It was her story and the growers in Colorado that really got the cannabinoids out of these plants, and catapulted these new uses in the U. S.

Charlotte’s Story on CNN

This cancer site below has been involved in research studies with cannabis and the role of cannabinoids in the human body.

Role of Cannabinoids in the Human Body

According to the center and published research, there are two different types of cannabinoid receptors in the human body, CB1 and CB2, found in different locations and which do different things. CB1 is mostly found on cells in the nervous system, including certain areas of the brain and the ends of nerves throughout the body, while CB2 receptors are mostly found in cells from the immune system. Because of their location in the brain, it’s thought that CB1 receptors are responsible for the infamous ‘high’ (known as psychoactive effects) resulting from using cannabis.

My Own CBD Oil Trial

In 2016, I underwent my own trial of CBD oil from a recognized supplier over a two month period. This entailed two different blends of CBD: A 4:1 blend of CBD/THC, and a 24:1 blend of CBD/THC. I tried doses between 5-20 drops at a time and placed it (sublingual) under my tongue. Most of my trials were in the morning. But I also tried it in the afternoon and evening. MY RESULT: I had hoped it might help with fatigue and/or sensory (SPD) sound challenges. However, I did not find any “measurable” improvement in my complaints during my trial with these CBD products. Each vial cost me $60. And this was not covered by insurance. I was provided a prescription letter by my neurologist. My purchase and correspondence was done online. And the two vials shipped to me via mail.

As for my other supporting online material on cannabis and other forms of alternative medicine, below is a blog I authored in Sept. 2015 on alternative medicine in addiction treatment, where I discussed cannabinoids and neurotransmitters, plus I’ve written about sensory processing disorder and cognitive accessibility. In the blog below, I also discuss the challenges that addiction and other neurological disorders pose in cognitive accessibility. Further below, is a blog I’ve authored on sensory processing disorder.

Complimentary & Alternative Medicine Methods in Addiction Treatment

Brain Dopamine Seratonin

 New Insights in Sensory Processing Disorder

Drum circle shakers come in all sizes and flavors, including, fruits and vegetables
Drum circle shakers come in all sizes and flavors, including, fruits and vegetables

Below, is my web page on drumming for wellness, which I have found to be very helpful in neurological disorders, movement disorders, stress-reduction, and general wellness. And below that, is a case study I wrote up on my experience with drumming in cerebral palsy and autism.

Drumming for Wellness

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
Stephen Dolle facilitates a drumming for wellness workshop at a private home in Orange County
Stephen Dolle facilitates a drumming for wellness workshop at a private home in Orange County

Drumming Therapy experience in Cerebral Palsy and Autism 

As for productivity, my No. 1 blog on this topic is how drumming and drum circles improve brain function and productivity in the workplace.

Drum Circles in the Workplace

Drum circles help to reduce stress and stimulate the brain for optimal function in the workplace
Drum circles help to reduce stress and stimulate the brain for optimal function in the workplace

Now it should come as no surprise that the country who has done the most amount of cannabis research is Israel. And the developed country that has done the least, is the United States. And for good reason, it is illegal to do research on it in the U. S.

Below, is a link to Dr. Raphael Mechoulam, the world renowned expert on medical cannabis:

Dr. Raphael Mechoulam

I’m not trying to make a political statement other than to report on what Dr. Gupta is sharing on CNN. The most compelling benefits in his reports have been in seizure disorders in children, which may well be a variant of x-linked hydrocephalus, where the children often have marked developmental and birth anomalies. In addition, many patients with hydrocephalus suffer seizures, with reports ranging up to 1/3 of those with hydrocephalus. It would seem cannabis could offer benefits to these individuals with hydrocephalus.

Lastly, below is a blog I authored in late 2015 on Nootropics, which are vitamin supplements that help to raise levels of neurotransmitters and related chemicals in the brain, as well as improve memory and productivity.

Nootropics help improve Brain Function and Productivity

Nootropics boost Brain Function and Performance
Nootropics boost Brain Function and Performance

You be the judge as to whether you think you might benefit from newer strains of cannabis and CBD oil. I would like to see further research done to better understand the types & amounts needed to provide benefits in a range of disorders. Unfortunately for me, this single trial of CBS oil did not produce any measurable benefit. But I feel that it is likely that further research will lead to new information on its use in illness.

 

Contact me for more information on speaking, consulting, or to schedule a drum circle.

Stephen Dolle
Dolle Communications
Drum Circle Facilitation, Neurological Hydrocephalus Consults, mHealth
Email: contact[at]dollecommunications[dot]com
Telephone (949) 642-4592

Cognitive Accessible Designs is newest BUZZ with Web Site and Store Design

Cognitive Accessible Designs is the newest BUZZ among Web Site and Store Shelve Designs in the new millennia, given the growing age of our baby-boomers and the growing special needs (brain) population in the U.S.. This translates to increased attention and demands placed on user access & use of everything from web sites to product packaging on store shelves. It transcends challenges posed by visual impairment, to the spectrum of learning disabilities, and autism, brain injury, and aging – each of which involves a diminished capacity to readily understand instructions & directions – and spans perhaps 25 percent or more of the U.S. population.

Cognitive Accessibility.org
Cognitive Accessibility.org

What does the term, “Cognitive Accessibility,” actually mean? Well, it means exactly as it sounds. It is defined as “reasonable” intellectual access to public places, things, and technology for persons with “cognitive” or “intellectual” disabilities, and from any number of etiologies (brain injury, learning disabilities, PTSD, developmental, aging).

Access means that the provider must undertake a reasonable amount of consideration & design preparation so persons with cognitive affected disabilities may understand and use the products. The prevailing law in this area comes under both the Americans with Disabilities Act, and Section 508 of the Rehab Act, but more in the latter, which holds specificity in access to web sites and somewhat in product user instructions.

Cognitive Accessible Designs would then be appropriate useful designs of web sites, product labeling, and instructions on products and premises that can reasonably be understood by persons with cognitive disabilities. The reason you haven’t that much about this thru the years is that up until more recently, it was difficult to ascertain what “reasonable & appropriate” designs were as the affected persons had such a broad spectrum of disability and aptitude. So designers didn’t know who & what level they were designing for.

But, over the last 10 years, several things have changed.

First, affected persons are more able to get out and about today thru revisions in social policy, educational, and work programs. Second, we have many in the military who have returned from combat with a spectrum of post TBI & post concussion disorders, and now we have far more awareness of it – as well as new research has become available. Thirdly, we have advances in, and much more availability of, cognitive aids, PDAs, mobile smart phones, etc. today, where many more people are using them, and this high usage is rapidly redefining cognitive accessibility parameters, where cognitive accessible designs are scrambling to keep up. Fourth, we have a significant age related “digital divide,” age 50-55 today, which is raising more and more challenges to our aging population, many of which are still computer illiterate. The tech industry resultingly left these 50M Americans out of consideration in their cognitive accessible designs. And now today, there is ever increasing on these Americans to learn to use tech. And fifth, lest not leave out the rising prevalence of dementias in our aging population. They have considerable cognitive disabilities, and their needs are yet to be met.

All said, there are a lot of Americans today with cognitive disorders. Most are out and about. Instructional designs have not kept up. And now we have a cognitive accessibility crisis!

I hope to get my CognitiveAccessibility.org site online soon. In the meantime, please visit our cognitive accessibility web page on our main web site: http://www.dollecommunications.com/cognitive_accessibility.htm One key emerging challenge lies in the cognitive accessibility of popular internet web sites like Google, Facebook, iTunes, and LinkedIn. Over the last few months, each of these sites have undergone a major update & redesign of their UI, or user interface. Each time a UI is changed, there is a new learning curve for the user. And where users have any medical condition, injury, or aging issue that limits the comprehension of the changes and architecture and subsequent use of the web site, we have a problem. And the problem(s) lie both in accessibility (cognitive), which are protected by disability law, and loss of productivity, which should be of major concern to employers & persons having to use such sites as part of their school or work.

In addition to cognitive accessibility and cognitive accessible designs, most web sites today still pose accessibility challenges due to the “digital divide,” that is, the educational exposure to technology by persons over the age of about 50 today. Such persons and internet users, not having grown up with or been schooled in technology, often find the Internet, tech, and mobile apps a significant challenge. And with so many of these being baby-boomers who have never fully adopted (if at all) the internet & tech boom of the last 15 years, web site and tech providers have a growing challenge. Now, add in the growing challenges of so many items on store shelves today, and the continual rearranging of products on store shelves, and stores and their products and packaging pose additional challenges in Cognitive Accessible Designs.

Take Target, for instance, who own 1700 stores nationwide. On average they rotate, introduce, relocate, or change the products on their store shelves several times per month. And after each change, customers have to re-familiarize themselves with location, product label, and missing/changed items. It presents ever-changing cognitive and visual challenges to shoppers. And if Target and other department stores, and product manufacturers, do not give ample attention to Cognitive Accessible Designs, you end up with a lot of confusion in stores, with lots of returns due to wrong items purchased. These experiences and added time/store visits then lower both accessibility and productivity.

Can you imagine how many man-hours across the U.S. in Target stores alone are at stake due to additional time and lost productivity in store returns? The figure is staggering. Yet, the trend in poor Cognitive Accessible Designs continues. You’d think we’d want to get this right, spend a little more time & money when creating these designs. But these are largely new issues for most of us in the U.S. because of our mobile population, aging baby-boomers, and millions of Americans today with learning disabilities, autism, post brain injury, neurological disorders, and the like. We must address this. It is a matter both of national productivity, and disability rights & accommodations!

I have written to several of the leading internet sites, but am yet to engage in any productive discussion yet. My web site suggestions thus far include:

1. When U.S. companies update their UIs and web sites, they should provide new instructions similar to that provided in “boxed” instructions, i.e. User instructions, A 1-page diagram of the site UI and architecture, and precautions & warnings for privacy & user settings.

2. Internet sites should adopt “UI standards” for display & site architecture as to how to set user privacy & notifications. Statistical data on affected internet users with brain and learning disorders requiring “Cognitive Accessible Designs” and protections under the American’s with Disabilities Act and Section 508 of the Rehab Act are considerable.

Some common disorders include:

1. Post TBI

2. Post brain tumor

3. Post stroke

4. Hydrocephalus, NPH

5. Autism

6. ADHD

7. PTSD

8. Post concussion disorder

9. Seniors w/ early onset of dementia

As web pages and web sites add more and more content and graphics, it makes the requisite design implications for cognitive accessible designs more and more critical. Recent updates and redesign of UIs including Apple, Norton, and LinkedIn, came without any notice or information that might have lessened the challenge for affected users needing to learn to use the updated UIs.

More than just issues with cognitive accessibility, Cognitive Accessible Designs also raise broad issues in Productivity and in the best use of our time. Clearly, as much as tech, web sites, smart phones, and super stores aid us in productivity, they’re resulting in our spending a huge amount of time trying to make them operational.

Cognitive Accessible Designs will be one of the rising public & educational challenges for the U.S. in the coming years. So we’d be wise to commit the sufficient amount of resources to get this right.

ABOUT ME: I suffered a brain injury in 1992 w/ 12 brain shunt operations to date. Background in medical technology, the neurosciences, music & drumming therapy, and considerable insight into technology, AI use of technology, and cognitive accessibility. Work part time as a neuroscientist in music & drumming therapy, medical software/apps monitoring, and the neurosciences.

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

Contact Dolle Communications
Contact Dolle Communications

 

 

 

 

 

 

 

 

 

 

 

 

 

Stephen Dolle
http://www.DolleCommunications.com
Newport Beach, CA