Most pALS must choose btwn:
b) archaic communication. IE. blinking
c) paying $20k for a system weaker than ur 1980s computer
I posted this on Twitter & Facebook on 12.29 2012. The general reaction was astonishment & a call for change. There was also, though, several responses asking what I was dissatisfied with from current communications offerings for patients with ALS (pALS). I will address this but first…
My goal for the “#detAiLS” posts like the one above is to provide some of the brutal, ah, details that pALS face. I see this as a counterbalance to my more frequent, optimistic & inspiring posts.
While the inspiring posts are more fun to read & write, I do not feel these posts provide an intimate nor accurate display of the challenges pALS must overcome.
The primary target for my #detAiLS posts are readers who do not know about these challenges. I believe that a cure for ALS will be found only when the general public has a clear & intimate understanding of ALS & its effects.
Additionally, until there is a cure, I believe that with the help of technology, pALS can live for decades. Maybe more importantly, I believe that these pALS will make a productive impact on the world. Based on this belief, our foundation established as part of its mission to; help develop and provide leading edge technology for pALS. I believe that this technology has implications beyond the ALS market. Someday, everyone will type, play video games and navigate their computers using their eyes.
Since Lou Gehrig’s death there has been no effective medical therapy development for pALS. During the same time period technological advancements for pALS have been, like the technology industry, exponential.
Someone cue the ‘I love technology’ song from Napoleon Dynamite.
The world is changing fast because of technology. As normal as Skype or Facetime seem to us now, the thought of video calling your loved ones from a phone would have seemed crazy several years ago.Today, we record, edit & broadcast media onsite, offsite and out of site. iTunes revolutionized the music industry years ago; now Spotify & Rhapsody are making the ‘traditional’ iTunes format obsolete. I have not bought, or even touched a CD or DVD in years. I stream. My foundation board meets monthly. We have members across the country. We meet via WebX, exchange content real time by sharing ‘desktops’, and edit documents collaboratively on ‘the cloud’. As incredible as this collaboration is, it’s done on laptops, phones & tablets that cost only a few hundred dollars, on average
After I was diagnosed with ALS, I was able to test some eye technology at a local hospital. The big names in augmentative and alternative communication (AAC) are Dynavox and Tobii. The systems I tested were ‘all in one’ eye tracking, computer, speech generation products.. I was impressed by the actual tracking technology. It was accurate and pretty intuitive to use.
The systems allowed for internet browsing, text messaging and media options but these options were limited and closed source.
Make no mistake, these systems provide a level of freedom and independence for pALS but I believe more can be done. The computer hardware is severely under-powered for modern communications and totally inadequate for someone tech savvy to do any useful work. The use of lower-end 32-bit processors, no capability for increasing the RAM beyond the 2GB installed, and the requirements for USB dongles to provide standard facilities such as WiFi and Bluetooth is simply unforgivable in a system with a price upward of $20,000.00. The excuse of “design-lag” is poor and irrelevant in a period of widely available off-the-shelf computer hardware totally suitable for the task and priced under $2,000.00. Moreover (this is for another post) insurance must realize that modern communication goes well beyond simple artificial vocalization.
Online communication via text, voice, video, and social media is a daily requirement. In order to stay engaged in life and be productive, PALS often require all of these communication methods simultaneously. To have hardware up to this task is a necessity and the current “brand name” offerings are severely deficient. Finally, these systems are incompatible with Apple/Mac products.
The current and future generations of pALS are “wired”. We create, edit, stream and share media from everywhere. We meet, communicate and collaborate with friends, family, colleagues, doctors and others online in real time from anywhere. We are productive and we want devices to facilitate our production.
I do not believe in complaining. I believe in doing. I do not believe in calling for change. I believe in making change. If I have my way, this change will happen. In making this change, we will also change the way the rest of the world communicates.
Note from Team Gleason Tech Committee: There are several solutions that do exist. These are not perfect solutions & they are difficult for pALS to find. We will share some of these solutions with you soon.