Hydrocephalus Awareness at HydroPowered.org
Art & photos below are in support of September as Hydrocephalus Awareness Month
The very first HydroPowered art ever created was the blue swirl image below left, taken from one of Stephen's MRI brain scans, and edited with the Android PicSayPro photo editor on the Google Play Store. From there, any product or activity containing the word "hydro" was explored to see how it might be used for fun & hydrocephalus awareness, including, the photo of the monster wave below. The 3rd photo below, of course, is our HydroPowered Racing Boat.
Advocacy in CNS Shunt Technology for Hydrocephalus
How could we talk about super heroes for hydrocephalus without sharing this story on the Terminator. One of the main themes in the Terminator character and movie was his knowledge of his implants, and ability to maintain these in good working order. When the Terminator was injured or incapacitated, he was able to repair himself right on the spot with diagnostic capabilities & technology solutions engineered into his implants. It allowed him to live and function independently of the people and companies who built him. In the case of persons living with hydrocephalus & CNS shunts, shunt malfunction is a common occurrence, and causes considerable hardship for the shunt user. A person with hydrocephalus can go from super hero to incapacitated and unconscious, in a matter of hours. And widely, few patients (and family) have much information about the CNS shunt implants in their bodies. The Terminator would not have survived with today's CNS shunts.
We find the Terminator theme & character remarkably well adapted to the plight of persons living with hydrocephalus, who have CNS shunts implanted routinely in their brains and bodies as part of their care and treatment for hydrocephalus. Unlike the Terminator character who could fix and maintain his implants, individuals with CNS shunts cannot, and are at the mercy of shunt manufacturers, and U.S. Food & Drug Administration (FDA). And we're not seeing the kind of progress in CNS shunt technology that wee need! Is it due to lack of funding for hydrocephalus research? Yes. But it's also outdated policies & oversight.
If it sounds like I'm taking a swipe at FDA, I am. I've had extensive dealings with FDA on CNS shunt safety at their highest levels. Some of you may remember the Biomaterials Act of 1996 where hydrocephalus patients were thrust right into the middle of the debate by the Republican controlled Congress, where they weren't concerned with hydrocephalus or the availability of silicone for CNS shunts. They were trying to pay back donors with a cap on all products liability claims. And they were willing to sacrifice us CNS shunt users in the process. We needed the Terminator then. And we need him today.
FDA has repeatedly told me they have "discretionary authority" on all decisions with regards to the quality & availability of shunt technology for us. Have you noticed all the prescription drug ads on TV nowadays? Well, that was part of a 1996 act to allow medical manufacturers to advertise direct to TV. Yet, FDA still limits, and more or less forbids, any social networking sites by medical companies and shunt manufacturers. I spoke three years ago at an FDA conference on this very topic, and I believe access & sharing of information on our CNS shunt technology would be a good thing. However, FDA differs on this. As they do on mHealth mobile phone apps. Yet, where were they when it came to addressing the problems of the last 15 years of programmable shunts loosing their settings and causing all kinds of turmoil for us CNS shunt users? The Terminator would never stand for this!
mHealth apps for Hydrocephalus
As for mHealth or mobile phone apps for hydrocephalus, there is a new bill before Congress called the PROTECT Act (S2007), which if passed would reduce the regulatory burden on mobile app developers for getting their mHealth apps to market. Currently, FDA requires fairly extensive guidance and filings that add considerable costs to mHealth app development. It is perhaps the main reason we don't have many mobile mHealth apps today. And hydrocephalus home care could really benefit from these apps. We need to support the PROTECT App so that more mHealth solutions become available for hydrocephalus.
As for specific mHealth apps for hydrocephalus home care, I currently use four (4) mobile apps, and they are:
1) For programmable shunts, a metal detector app is useful in scanning your surroundings to better learn of home electronics and such, that emit problematic high magnetic fields.
2) If you suffer from a lot of headaches from changes in weather i.e. storm fronts, you'll want to have a mobile weather app or mobile weather page that displays a 24-hour barometric pressure graph.
3) If you are affected by, and become irritable and develop headaches from, certain types of sound and sound levels, you will want to download a decibel meter app.
4) And I highly suggest that you keep track of your hydrocephalus complaints, observations, and triggers on your hydrocephalus status. You'll want to download either a pain management, or memo/task app, so you can make real time entries.
As for app no. 4 above, I earlier designed a method to run on a PDA called the DiaCeph Test to do this, and more. It could collect & aggregate observations and complaint markers on patient & shunt status, and estimate shunt performance from this, that could be later shared with doctors. Today, it could be made into a mobile phone app and allow hydrocephalus patients all over the world to track their status and share with doctors. But, development costs are very high. And current FDA restrictions have complicated the development cost. Beyond mHealth apps, several medical companies are now working to develop a new diagnostic telesensor to gather ICP & performance information on CNS shunts, that could be transmitted thru the skin in a physician's office, or remotely to a server, where others could monitor your shunt performance. But, it remains at least a few years away.
Cognitive Accessibility - Usability
Stephen continues to write and advocate for cognitive accessibility of web sites, mobile phones & apps, consumer devices & instructions, and moderation of "noise" in and around the home and in public places. His site www.CognitiveAccessibility.org still points to a dedicated page on his main web site. However, he hopes to create its own site and following in the near future. Below, is a recent photo meme he created on these challenges. Today, cognitive accessibility and usability are inseparable, and comprise a major crisis on access to knowledge due to lack of "inclusion" in designs.
Please get involved in hydrocephalus advocacy!
Site Design by Stephen Dolle