Mobile Apps and Patient Tools for Living with Hydrocephalus

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

I initially wrote this in 2015 under the title “Spread Awareness of Hydrocephalus on Rare Disease Day.” But then following several large updates of content, on April 18, 2016, I changed the title to “Mobile Apps and Accommodations for Living with Hydrocephalus,” which I feel more aply represents its content now. I discuss many of the everyday challenges faced by persons living with hydrocephalus, and discuss my experiences with specific mHealth mobile apps and accommodations-solutions needed for everyday living.

Hydrocephalus is a neurological disorder where CSF (cerebral spinal fluid) is not sufficiently cleared from within and around the surface of the brain – from a variety of etiologies. The fluid then abnormally collects in the brain’s ventricle compartment thereby exerting abnormal and often dangerous pressures on critical structures of the brain. It is normal to have CSF in the brain, as it is produced in the choroid plexus at a rate of about 20cc per hour. It’s primary purpose is in regulatiion of blood pressure (BP) and intracranial pressure (ICP). It also circulates up & down the spine and helps to circulate needed nutrients throughout the brain. Hydrocephalus then develops when the brain is not able to clear CSF fluid at the same rate it is produced, more often resulting in swelling of the ventricles – except in NPH, or normal pressure hydrocephalus, where there may be limited or no swelling, and normal amounts of pressure.

Hydrocephalus occurs in utero and shortly after birth in 1 of every 1000 births. It also occurs in children from cysts and tumors, and somewhat also in adults. It occurs post trauma through subarachnoid bleeding, and idiopathicly, or naturally, from anatomical malformations of the brain and brain-stem, and from aging. Its overall prevalence in the U.S. is estimated at about 40,000 to 50,000 new cases each year. But due to its broad spectrum of causes or etiologies, hydrocephalus has been accepted into the rare diseases database. Many scientists continue to refer to hydrocephalus as a rare disease because of its association with genetic birth defects. The illustration below identifies where CSF is produced and circulated within the brain.

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

DolleCommunications is my neurosciences blog I launched in 2010 after becoming affected by hydrocephalus following a 1992 auto accident and concussion. The photo of me below was taken in 1998 after one of the shunt surgeries where I had used my newly developed DiaCeph Test mHealth method to help direct replacement of the needed medical device components on my CNS shunt system.

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

A CNS (central nervous system) shunt is the most common form of treatment for hydrocephalus. It is a two or three piece catheter with a one-way pressure valve that more often drains into the abdomen, or peritoneum, where it is termed a VP shunt. Alternately, it can drain into the heart (VA shunt), or draw fluid off the spinal canal into the abdomen (LP shunt). Over the last 20 years, a newer surgical procedure, a 3rd ventriculostomy, has been developed where a small opening is made in one of the ventricles (usually the 3rd), which if successful, allows for proper circulation and clearance around a an aqueduct blockage and can negate dependance on a CNS shunt. Only 10-15 percent of those with hydrocephalus will benefit from this procedure.

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

It is common knowledge today that shunt technology is in need of modernization. Present day treatment outcomes (esp. with CNS shunts) often leave individuals with significant quality of life challenges with no shunt diagnostics to provide early warning shunt malfunction or accidental reprogramming, which is all to common and can result in brain damage and/or blindness. Since my onset in 1992, I’ve undergone 12 shunt revisions.

Living with hydrocephalus and especially a CNS shunt presents a number of key challenges, most notably, shunt malfunctions and corrective surgery, but also frequent headaches, cognitive and memory difficulties, challenges with balance and hand/eye coordination, and difficulty adapting to a noisy and complex world where the necessary accommodations are widely unavailable today. I discuss some of the challenges and much needed accommodaitons for hydrocephalus further below.

Shunt Illustration for Hydrocephalus
Shunt Illustration for Hydrocephalus

I became involved as an FDA patient advocate and inventor in hydrocephalus several years after my onset of hydrocephalus. As a patient advocate, I authored a critical 1996 citizen’s petition to the Food and Drug Administration (FDA), plus made recommendations at the 1999 STAMP Conference in Bethesda MD. I’ve also written FDA position papers and recommendations for the oversight of shunt technology, and spoke at the 1999 STAMP Conference in Bethesda, Maryland.

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

After writing my FDA petition on CNS anti-siphon shunts in 1996, my research led me to design and patent a non-invasive monitoring system for hydrocephalus, I named the DiaCeph Test. It initially was to run on a PDA. But I could not raise the necessary funding and support to make it. The DiaCeph Test today could be made into a mobile phone data and text app. Most of the development costs today is still from burdensome FDA guidance on mHealth apps. If it were available, it would revolutionize the care of hydrocephalus. Below, you will find a link to a blog I’ve written as to the current day challenges facing the DiaCeph Test mobile app and similar mHealth apps.

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

DiaCeph Test could be Mobile Phone App

It was in 2009, that after many years of my patient advocacy and answering inquiries from affected patients, I began offering patient consults for a fee. Most of my patients have been those affected by complex hydrocephalus, and with unresolved challenges. However, such unresolved questions and unsatisfactory outcomes are very common in hydrocephalus still today – arguably as high as 30 percent of all patients with CNS shunts. Below, is a link to my company web page on obtaining a hydrocephalus consult and for hydrocephalus shunt monitoring utilizing custom DiaCeph paper forms & instructions.

My Hydrocephalus & Shunt Monitoring Consults

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

In 2004, I became involved in drum circles after earlier playing piano, vocal work, and some stage & film. I initially used piano as a form of therapy for my challenges, then later guitar, then in 2004 percussion. I immediately realized a call to become more involved in drumming, and I began to take classes, and eventually help put on drum circle events. Today, I am very involved in drum circles and drumming for the brain & wellness and for disorders like hydrocephalus.

Drumming Therapies for Wellness and Neurological Disorders

On Sept. 24th, 2015, I held two drumming workshops at the 2015 NHF Patient Power Conference in Anaheim, CA. My methods help with others with balance, coordination, cognition, and communications challenges. SEE info in the flyer below.

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

One of the more problematic challenges with hydrocephalus, and most neurological disorders, is with cognitive accessibility and it’s related sensory processing disorder, or SPD. These challenges are often disabiling and occur in hydrocephalus and neurological and learning disorders such as autism, ADHD, PTSD, Parkinson’s, stroke, post tumor, addiction, and even migraine. I have written about both fairly extensively. And own the domain CognitiveAccessibility.org – which I am yet to host a web site. I currently have it pointing to a supporting temporary page on my main web site.

Cognitive Accessibility accommodations er CognitiveAccessibility.org
CognitiveAccessibility.org

CognitiveAccessibility.org

COGNITIVE ACCESSIBILITY describes the array of accommodations and protections needed today by affected individuals. Without these protections, cognitive dysfunction and often one’s mental health state are easily exacerbated (made worse) by exposure and stress of unhealthful cognitive triggers. In fact, today there is a large lawsuit brought by families with autism against Disney World for failing to offer cognitive disability access to park rides. The science is real. I’ve experienced thousands of first hand accounts.

Common cognitive triggers include loud TV & radio commercials, loud helter skelter music, noisy construction equipment and machinery, bright lights, and powerful odors. When these triggers are present and not managed properly in public places, they restrict access by persons susceptable to it. Today we know that mental health and physical brain changes go hand in hand, meaning, one affects the other. This next blog describes many of the key sensory challenges in sensory processing disorder (SPD) and sensory challenges in hydrocephalus, and related disorders. Below, is also a recent diagram on the brain’s mechanisms involved in sensory processing disorder.

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

New Insights in Management of (SPD) Sensory Processing Disorder 

The protections cited are for public facilities where the triggers can often prevent an affected individual from safe and healthful use. It is said be a part of current disability law (i.e. autism v. Disney lawsuit). But rarely is enforced. Most people are unaware of the science and cause and effect of the triggers to behavioral melt-downs. In addittion to sensory protections, there needs to be better understanding of directions on UIs of web sites, signage, directions, product labels, etc. Today, I find you’re more likely to see a foreign language accommodation, than a cognitive disability one.

TSA Cares Logo
TSA Cares Logo

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

This blog features updated information on TSA Meet and Assist services for passengers with disabilities, and safety information on airport scanners for safe use by persons with programmable shunts for hydrocephalus. I also cover use of TSA Meet and Assist services for persons with cognitive disabilities, and information on the Air Carrier Access Act.

Airport scanners had earlier worried me as I live with a programmable CNS shunt for hydrocephalus, and I have been over-exposed to radiation from CT brain scans. With my Codman Certas CNS shunt valve, I do not go thru the metal detectors at airports or anywhere (even though some state magnetic field is safe for my shunt). I recommend that if you have any type of programmable CNS shunt, that you do not go thru metal detectors.

I’ve since updated this blog with newer information on the safe use of airport scanners.

The next two blogs list helpful information on mobile apps for sensory processing disorder, as well as apps I use and recommend for living with hydrocephalus.

Google play-store-logo

Blog: Mobile Sound Apps for Hydrocephalus & Sensory Processing Disorder

 

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

eWeather HD App helpful in Managing Weather related Migraine Headache

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

mHealth Apps in Neurology
mHealth Apps in Neurology

Design and Best use of mHealth Apps

Perhaps my most creative public outreach is the fun HydroPowered.org web site for hydrocephalus. I created this in 2013 as a fun platform to share art, technology, and super-hero stories among those affected by hydrocephalus.

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

Blog on HydroPowered.org Platform Connects Hydrocephalus Families

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

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

Apps & Web Sites I Recommend for Persons Living with Hydrocephalus

Android Play Store Elecont HD Weather App link

Apple iTunes Store Elecont HD Weather App link

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

My Blog on Tips for Sound Sensory Processing Disorder

Smart Tools Page on the Android Play Store

Smart Tools Apps on the iTunes Apple Store

Smart Tools Instruction Manual

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

Drumming for Wellness workshops

Drumming in the Workplace

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

HydroPowered.org

Shunt Monitoring and Consults for NPH & Hydrocephalus

DiaCeph Monitoring Method hopes to be new Mobile App

If I’ve left out any my blogs or apps, please let me know. If I may help you with hydrocephalus mobile apps, hydrocephalus consults, or drumming therapy for hydrocephalus, or if you are interested in furthering the development of the DiaCeph Test or other mobile apps for hydrocephalus, let me know. Contact me via my info below. Feel free to CLICK and SAVE my contact JPEG card.

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

HydroPowered.org
StephenDolle.com

Contact Stephen Dolle
Contact Stephen Dolle

 

 

 

 

 

 

 

 

Contact Dolle Communications
Contact Dolle Communications
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Hydrocephalus and NPH Monitoring by Stephen Dolle of Dolle Communications

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.

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

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

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