I search Spinocerebellar Ataxia (SCA) websites for recommendations, current research, and disability issues, etc. They often help to distinguish between current theories, legitimate studies, and scams. There are many people all over the globe like me. People with ataxia tend to be a positive, but realistic group of information–seekers and givers (not always, but generally). The periodic venting always stimulates an empathetic discussion that never starts with the words 'At least...' I find the discussion helpful, as well as enlightening. It's better to be primarily hopeful and not hopeless, but continuous positivity just isn't my style. I'm happy to have the occasional solitary 'Pity Party'*.
Although there are over 40 different types of ataxia, the issues confronting affected persons are similar. Since ataxia is characterized by a loss of coordination, often people's balance, gait, and speech is most noticeable to the uninitiated. Through reading web posts, I've come to realize most people with ataxia lie somewhere on a spectrum. As usual, I'm somewhere in the middle symptomatically. There are those more or less affected, people at different life stages, financial levels, varying village sizes**, and approaches to coping with a chronic disorder.
Two themes seem to be universal on ataxia websites. Firstly, everyone wants their ataxia to go away, get dramatically better, or be curable. Spoiler alert—it won't, it's not likely to, and it's not. Certainly various devices, supplements, and strategies do make a difference in managing ataxic symptoms, but that varies from person to person. Secondly, people are often mourning the person they used to be—the runner, the mountaineer, the worker, the intrepid traveler, the jazz dancer. That's often a big factor in their process toward acceptance of ataxia***. So far, my coping strategies keep me doing what I can and are effective more often than not. I stay in the game, get up every morning, value my village (pardon the pun), scoot, and blab, blab, blog. Although my effort toward acceptance is usually on an uphill trend, I haven't found it to be a straight line. Like life, some days you're the bug, some days you're the windshield.
The websites also reveal those who are trying to figure out what is due to ataxia and what is due to age. I figure since both are progressive and incurable, it probably doesn't much matter. I just follow treatments the website contributors recommend—good nutrition, exercise, and sleep.**** That works for pretty much everything anyway, and they're free.
People with ataxia and their loved ones want to be able to predict the neurological progression of the disorder. Wouldn't we all? Since the cause of the disorder, age at onset, and manifestation of symptoms vary, so does the progression. The best piece of advice I ever got was to take one day at a time. Everyone, even in the same family, is different (duh).
At some point, we all embark on the 'Eternal Quest' for an answer. I'm all for seeking appropriate treatment from knowledgeable physicians and expecting respectful care. But when I found myself getting angry for various unfounded reasons, I had to face some hard truths about both me and ataxia. No one was going to give me an answer to something that had no solution. Spinocerebellar Ataxia (SCA) is an orphan disease in that it's rare and most people, including many healthcare providers, don't know much about it. I live with it and did the homework. It wasn't a particular provider's fault that I knew more about my condition than most health professionals.
I did see a neurologist who specialized in the Group of Movement Disorders (Parkinson's, SCA, Huntington's). She answered all my questions, helped me apply for disability, encouraged me to read the research literature, and wrote the 'I'm Not Drunk' letter*****. But she made it clear that there was nothing else she could offer beyond symptom management and annual follow up. She also cautioned me to be skeptical of cure or treatment claims.
The lesson: There is likely no 'Holy Grail' for Spinocerebellar Ataxia. It is what it is.
*Previous post: Pity Party––Underrated??
**Previous post: Where's My Village?
***Previous post: Snap out of it!
****Previous post: Skeeter, My Exercise Buddy
*****Previous post: But officer, I'm not drunk
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