I didn’t know that there so many that aren’t being offered the medication that has helped me. …
There are medications that may help you with your ataxia symptoms! I have been on them since 2003. They were a godsend for me. I was able to continue working and sinemet took care of my balance issues quite well. Oh I knew I wasn't perfect but it was a whole lot better than not having the meds. I guess I have been naive to think that everyone else was offered the same treatment as me. I understand each of us is an individual situation and what works for one might not work as well for another. But if a patient is being denied meds because they don't have Parkinson's, that is a big mistake.
My Mom was told there was no treatment for her- in 1980 they hadn't discovered and identified ataxias yet. Her diagnosis: a “spinocerebellar degeneration”, cause unknown. She read an article stating that Sinemet (carbo/levodopa) , known as the miracle drug for Parkinson's, seemed to be helping restless legs as well- one of her symptoms. Her doctor was willing to try it, and then she could get up from her chair so much better! She was THRILLED with the improvement!! Are we all familiar with the multiple attempts to stand up from a seated position?!
I have been fortunate in tolerating meds without side effects. Therapy may be helpful, but I was able to continue working for 12 years because of sinemet, gabapentin and also azilect. I took 1 tablet sinemet twice a day at first and was maintaining a pretty normal life. Now, 12 years later, I take 1 and a half every 3 hours, but I can still walk around home without a cane most of the time. Gabapentin helped with neuropathy (painful twitch in my leg). Azilect kept the annoying tremors at bay for a long time. I wanted quality of life, as much as possible, and for as long as possible! Now the increased sinemet still calms the tremors most of the time.
It may be helpful to some of you to learn more about this medication and discuss it with your doctor. It is routine treatment for ataxia at the clinic for MOVEMENT DISORDERS where I go. I didn't know how lucky I was to get referred there. Like I said, each case is different, but it worked well for me.