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.
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.
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.
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.
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.
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.
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.
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.
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 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.
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.
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.
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.
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.
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.
Apps & Web Sites I Recommend for Persons Living with Hydrocephalus
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.