Mobile Apps and Patient Tools for Living with Hydrocephalus

February 28, 2015March 8, 2019 Stephen Dolle Neurosciences7 Comments

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

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 hydrocephalus 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.

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 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.

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

DiaCeph Test could be Mobile Phone App

In 2009, after many years of 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. Unresolved complaints and unsatisfactory outcomes are common in hydrocephalus – as high as 70 percent of all patients with hydrocephalus.

I am also very involved with weather apps and barometric pressure monitoring. A link to my primary blog on this is listed further below.

My biggest new discovery in this space comes from a study I undertook in 2017 with the MigraineX ear plugs used in the management of headache, but also in sound suppression. I found that insertion of MigraineX ear plugs before, and even after a harmful sound exposure has occurred, can lessen the associated headache, irritability, cognitive, and SPD complaints by 50% or more. So I carry my MigraineX ear plugs with me all the time to manage sound exposure & associated SPD complaints. They are particularly helpful amid noise from construction, machinery, malls, restaurants, theatre halls, and more. They sell for about $12 on Amazon and at many drug stores.

I have also been undertaking barometric pressure monitoring now with my Samsung phone’s built in barometric pressure sensor. The built in sensor can display sharp short term changes in pressure that weather sites & apps do not display. Most newer high end smart phones have this sensor built in. But you need an app to get the display. For this, I currently use uBarometer Pro. I have been able to correlate these short pressure changes as triggers of pain and headache.

The web link (web page) below describes how to obtain a consult for hydrocephalus, shunt monitoring, and mHealth monitoring with custom apps, and DiaCeph forms and user instructions.

Hydrocephalus & Shunt Monitoring Consults

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.

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.

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

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

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.

Blog: Mobile Sound Apps for Hydrocephalus & Sensory Processing Disorder

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.

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

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
Email: contact[at]dollecommunications[dot]com
Dolle Communications
HydroPowered.org
StephenDolle.com

Fun Web Site for Hydrocephalus features Super-Heroes and Art

September 19, 2014March 1, 2018 Stephen Dolle Neurosciences6 Comments

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.

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

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

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.

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

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

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

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.

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

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

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

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.

Stephen Dolle
Dolle Communications
Email: contact [at] dollecommunications.com
Dolle Communications

HydroPowered.org

Stephen Dolle Headshot in a Suit

Drum Off for Hydrocephalus Awareness

August 25, 2014August 13, 2017 Stephen Dolle Neurosciences4 Comments

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.

My Story on HydroPowered.org

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.

National Hydrocephalus Foundation (NHF)

NHF Logo

NHF PATIENT POWER Conference Agenda

https://www.facebook.com/events/1471103479847030/

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

Drumming for wellness helps seniors and those facing chronic illness

Drum Circles make for great Children's Activity as young as age 3. — Drum Circles make for great Children’s Activity as young as age 3.

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.

Seniors came alive to play and dance during this 2010 drum circle at the Costa Mesa senior center.

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

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.

Related Blogs and Information

Spread Awareness of Hydrocephalus on Rare Disease Day 2015

Cause Marketing Web Site for Hydrocephalus uses Super-Hero Theme

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

Hydrocephalus Monitoring Method Hopes to be new mHealth App

How the Internet is like one big DRUM CIRCLE

Contact me through my web site my information here.

Stephen Dolle

Dolle Communications

Hydrocephalus and NPH Monitoring by Stephen Dolle of Dolle Communications

March 16, 2014March 1, 2018 Stephen Dolle Neurosciences7 Comments

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. 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.

The DiaCeph paper methodology could easily be produced as a mobile data app.

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.

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 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

Diaceph hydrocephalus monitoring report.sample presentation from Stephen Dolle

NPH Consult Report #2 on SlideShare.net

NPH Hydrocephalus Patient Consult Report w/ Review of CT Brain Images from Stephen Dolle

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: