Spinal Muscular Atrophy type 3 is my particular poison >.<
Hi Rythh,
I run Elitekeyboards.com and neurodegenerative diseases are particularly close to my heart. I watched someone close to me suffer from ALS for many years, and their particular progression of weakness was very similar to what I read about SMA; starting in their legs, then gradually moving up their body. I hope you have found good physical and occupational therapy care by now, but sadly, these people often know little about keyboards in my experience, and while I'm not a doctor or therapist, keyboards are my business so I would like to relate some of my experience to you.
This ALS sufferer was a touch typist and actually used a standard layout Cherry Brown based keyboard for some time without issue, but as their pinkies and ringer fingers became weaker, they found the hard landing of those switches fatiguing. They weren't interested in curved "ergonomic" keyboards, and I assumed it was mainly because they felt unfamiliar with them, having used standard layout boards their whole life, but I later learned that as the disease progressed, the energy they had in a day also declined, so adapting to and learning new tools was just too frustrating. So I offered them a Realforce 103U with an ergonomically weighted layout that they found to be much more comfortable, which they ended up using into their last days when they could only use their index fingers.
Over the progression of the weakening, the biggest difficulty in typing was not the switch or the layout, but their hands. As the muscles in their palms atrophied, they began to develop Ulnar Claw (aka claw-hand), which made it near impossible to use their pinky or ring fingers for typing as it worsened, early on though, they were able to use a sleeping device that would stretch out the tendons in those fingers which lessened the progression for some time. Ultimately, they were left with just index fingers, and the un-ergonomic flat surface of a standard keyboard turned out to be a benefit to them as they pecked around the keyboard. (Note; they did have access to a gaze interaction keyboard, but while they could use their index fingers, they still preferred to type.)
I've done a lot of reading regarding ergonomics and typing, and from what I can gather, our fingers are pretty tough and for someone who is in good health at least 90% of the way to comfort comes from actually getting their hands into a position such that typing doesn't stress other parts of their body. Less than 10% of comfort will be due to the actual switch used or the keyboard layout.
However, for someone who's health is declining, it's much more difficult to quantify. I'm not going to recommend one of our products to you because of one anecdotal case (or because I sell them), but I would urge you to consider that an ergonomically shaped keyboard may not be the panacea you or others might imagine it might be, particularly if your health continues to decline and your needs are constantly changing, i.e. a $1k Datahand won't work if you have Ulnar claw. The best thing you can do is try as many things as possible.
I do not make such an offer regularly, but I'd be happy to send you a Realforce 104U with an ergonomic weighting for you to try out for a month or two. Please contact Brian at support@elitekeyboards.com if you're interested.
Brian