Thats good that you can still draw despite the tremors. How are you managing to do that? I used to love sketching and water colour painting but now I struggle to write a birthday card, anything longer than my signature really.
I tend to have jerky muscles though and arms go stiff and tense when trying to control a pen to write as opposed to a constant parksonian-type shakiness.
Mine came on quickly due to my thyroid starting to shut down in my early thirties and I was in wheelchair by first 18 months and my speech was starting to be affected within the first 2 years. Mine has been a steep learning curve for last 7 years with a disability which seemed to change as soon as I got used to one level of disability another symptom would appear. Mines in most of my muscles now except my eyes (thankfully, as I am been deaf since age 16 - not connected to ataxia)
Having adapted to been deaf at a young age and having to learn to lip-read I found learning to handle a wheelchair much easier in comparison and was soon back on my feet (so to speak) in early days.
However since last year when it also started in bladder muscles and arms/hands as well things started getting a bit more challenging. I did lot more exercises to cope with arms but found bladder issues embarrassing and humilating so wouldnt leave home unless I knew there was a disabled loo I could get in and wouldnt drink at all if a certain distance from one.
Recently I have found communication problems the most frustrating and I’m still dealing with this. I will be receiving my first communication aid soon as visitng health professionals are having real difficulties understanding me and its a nightmare trying to get an interpreter to sign for me. (I’m in small village in Yorkshire there aren’t many around here)
None of my neighbours can sign so I’m very isolated socially, I’m hoping the lightwriter will give me some confidence back to speak to people other than only using it with health professionals in my own home or their office.
At moment I have mixed feelings about it, part of me is sad that I have to use one to communicate cos I can barely get my name out, not something I thought would have happened before I had even reached 40! Another part is just relieved that I at least have some way to communicate in an emergency as I get sudden allergic reactions and have had chest pains in the past too.
I havent had confidence to join any new groups as I dont have an helper (again… cos I couldn’t find anyone who knew how to sign) or transport as I couldnt communicate with people there seemed little point, but I do keep myself busy around the house. I have a dog to walk twice a day I use mobility scooter to take her round village, I do physio exercises everyday twice a day
I have been learning alot about Assistive Technology as I was struggling to use my PC and also have my own small group for people who are losing speech or have never spoken and use communciation aids and assistive technology. I feel that has helped me as I feel a little more in control that I know whats out there and what I would need as things progress further.
Acceptance is a long slow process and difficult when you have a disability that changes every few years just as you get used to one level of disability. Here’s my blog if you want to read more about living with multiple disabilties: