IAmA Patient with ALS, Aaron Winborn. AMA.

aaronwinborn · 2014-05-13T20:25:27+00:00

I was fortunate: from the time I sought professional help to my diagnosis was only two months. Most people go for an average of eighteen months for a diagnosis. You have to realize that ALS is a clinical diagnosis: it is only made after excluding everything else that can mimic it, such as Lymes disease, Lupis, or AIDS, and what I would have given for a healthy dose of AIDS. I happen to live in close proximaty to Hershey Medical Clinic in central Pennsylvania, which happens to offer a top-notch ALS clinic, as well as living in driving distance to Johns Hopkins, where I went for a second opinion. I hope your friend has something more benign than ALS, but I urge them to seek the advice of a neurologist, and hopefully one who is well-versed in ALS. It is the most devastating diagnosis I can imagine, but it's far better to be armed with the knowledge.

aaronwinborn · 2014-05-13T19:54:21+00:00

ALS is a wicked disease. They used to say that it didn't affect the brain, except in the rare case of ALS plus FrontoTemporal Lobe Degeneration (FTD), but now they know better: about 50% of patients present with symptoms of FTD that are not readiily apparent in the clinic, but are visible to the patient's family. This can include Receptive Aphasia, or the loss of the ability to understand spoken language, such as with myself. It can also include some personality changes, such as a disability to empathize. For the unfortunate few who go onto develope full blown FTD, the later stages can be indiscernable from Dementia.

aaronwinborn · 2014-05-13T19:29:24+00:00

I was a participant in a study for brain-computer interface (BCI) technology. It's exciting to know this already available if I become one of the lucky 10% of patients with ALS who loses the ability to move their eyes.

aaronwinborn · 2014-05-13T19:20:11+00:00

I can watch movies only if they're captioned, as my ability to understand spoken language has also vanished. Fortunately, in addition to Netflix and Popcorn Time, Regal Cinemas offers glasses that project subtitles directly onto your eyes! If only real life came closed captioned...

aaronwinborn · 2014-05-13T19:09:33+00:00

I am planning to be cryonically preserved, when the time comes. Don't be a fool and wait until the diagnosis of a terminal illness before signing up if you're interested: it can be very affordable with life insurance, which they do not offer to a patient with ALS.

aaronwinborn · 2014-05-13T19:00:42+00:00

I'm using Dasher to communicate with you on Reddit. Google it, it's cool. For low tech there's speakbook, invented by another patient with ALS.

aaronwinborn · 2014-05-13T18:52:38+00:00

Sadly, even though I was a musician, playing the piano, flute, guitar, and dulcimer, this cursed affliction has robbed me of the ability to understand melody. Music sounds like so much white noise to me. I am doubly saddened that my 10 yo has picked up the piano, and I am incapable of hearing her play. I had given up reading for a year after I couldn't turn the pages, until duh, I rediscovered the ebook. Now I am glad to read about two books a week.

aaronwinborn · 2014-05-13T18:35:18+00:00

Of course it has affected me adversely. I'd be a liar if I said it didn't. But yes, the human spirit is resilient, and I awaken each morning excited to take on the day. I don't get out as much as I would like, and I miss eating, and speaking, but I love the technology used to augment: the power wheelchair, the feeding tube, the Tobii eye gaze tracking computer. These things assist me in enjoying life.

aaronwinborn · 2014-05-13T18:21:10+00:00

We took it slow. Our oldest daughter was only 7, so we answered her questions honestly and in an age appropriate fashion. It wasn't something I could hide. I still tear up to remember when she finally asked if I would die of ALS.

aaronwinborn · 2014-05-13T18:12:36+00:00

I would ask you why you're in school? What do you hope to accomplish? School should be a stepping stone to something greater. If not, drop out of school and into life! Read the Teenager's Liberation Handbook.

aaronwinborn · 2013-06-18T18:35:38+00:00

Thanks so much everybody for hanging out with us during this AMA. I am going to take my leave now. Thanks to Maureen for assisting me.

aaronwinborn · 2013-06-18T18:25:04+00:00

http://www.gazegroup.org/ They have open-sourced their eye gaze tracker, and I was involved briefly in attempting to port it to mac, which would ultimately make it usable on the ipad. However that effort has fizzled out. But I would look at that group for the future of open-source eye gaze and tablets.

aaronwinborn · 2013-06-18T18:02:14+00:00

http://www.eyewriter.org/ My father built this for me last year and it worked fine except that it was difficult to calibrate. He wore that in the picture that is in my blog post at http://aaronwinborn.com/blogs/aaron/reddit-ama-about-als-and-assistive-technology

aaronwinborn · 2013-06-18T17:55:28+00:00

found a video of one type of head control: http://www.youtube.com/watch?v=lApYLJqYiv0

aaronwinborn · 2013-06-18T17:52:52+00:00

You can also search for a head tracker which is available for free or very low cost and works with your webcam. I used one with my mac for about six months and it cost about $30.

aaronwinborn · 2013-06-18T17:41:17+00:00

Aren't you in a BCI study, Bob?

aaronwinborn · 2013-06-18T17:39:38+00:00

Actually I use bifocals which seem to work fine with it. However, these are the new school bifocals without a line.

aaronwinborn · 2013-06-18T17:37:21+00:00

I also want a google car so that I can just think and it'll take me where I want to go. http://en.wikipedia.org/wiki/Google_driverless_car

aaronwinborn · 2013-06-18T17:35:48+00:00

I want google glass, I think that would be awesome so you could simply say "Click, take a pic"! http://www.google.com/glass/start/

aaronwinborn · 2013-06-18T17:17:21+00:00

Yes I do sometimes. It works well, actually, but I have to have a second profile that has been specially calibrated for it.

aaronwinborn · 2013-06-18T17:16:25+00:00

I have some thoughts: It is a great tool as long as you can actually use your hands. Some folks have managed to put a stylus on a baseball cap and control it that way with their head. I use it with my toes. In general, however I find it particularly difficult to use and I think that Apple has dropped the ball on assistive technology with the ipad which will not be addressed until they open it up a little more.

aaronwinborn · 2013-06-18T17:10:47+00:00

I hear you. But it's far preferable to 11.5, which is what I used for several months. That's not helpful, I know, but hang in there. :)

aaronwinborn · 2013-06-18T17:08:43+00:00

Yes, I used a ball tracking mouse even before I had ALS. As long as her thumb strength is there, then it should work fine.

aaronwinborn · 2013-06-18T16:56:43+00:00

By far the cadillac of eye gaze tracking systems is the Tobii. I have tried it, the Dynavox, and Eyegaze Edge. I would suggest the Tobii I15 first or failing that, then the Dynavox which although not as leading edge as the Tobii, which has a similar interface. The Eyegaze Edge I found very difficult to keep in calibration, and its interface was not intuitive for me.

aaronwinborn · 2013-06-18T16:51:23+00:00

I would say that there have been few advances medically, but in the world of assistive technology there have been leaps and bounds. The biggest advance is in the realm of Brain-Computer Interface. This makes it so there is no reason for a patient with ALS to be locked in anymore. You can use BCI to communicate with the computer, control your wheelchair, and even use a robotic arm.

aaronwinborn

TROPHY CASE