I have SCA1 and want to know how ataxia progresses - since October last year my walking, my speech, my digestion, my sleep and body aches are affected. Eg. I keep getting jerks in my calves and fall down - good thing is that I have not hurt myself. Is there any way that I can evaluate myself. The physios and consultants are busy giving me exercises and medication. But when I was diagnosed with ataxia, I was told it was a progressive condition. I have to rely on Google doctor 😃. Anyway if you know something. Thanks in advance amynah.
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Amynah
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From what I know after reading other people’s posts we generally appear to progress at different rates.. Not everybody has exactly the same symptoms, or if they have similar symptoms, they might not experience them to the same degree.I didn’t experience pain and stiffness for many years, I used to think it just wouldn’t happen to me..but it did eventually.
Some people find challenges are mainly with balance, but as well as that I’ve had chronic eye problems..
Your Neurologist is the best person to give an opinion about your specific situation 🙂
Hi Amynah, my wife has FA and as wobblybee said, progression and symptoms vary between people. I don't know much about SCA1 so I won't comment further on that.
However, from what I read in your question, about wanting to evaluate yourself, I'd like to say this (based on my experience with supporting my wife). Don't give yourself too much of a hard time, the ataxia situation is hard enough without comparing yourself again some arbitrary "milestone". If you spend all your time figuring how much progression has happened in the last few days/weeks/months, you'll have forgotten to pay attention to what actually happened, the great conversations with friends, the sunrises, the sunsets....
I'm not saying don't be Ill-informed about your situation, and by all means learn what you can about it. I'm sure being mindful of the condition will help slow your progression, but don't fixate on it. Change the things you have the power to change (daily routine, exercise, diet etc).
I have a few tips and tricks for things we have at home to make my wife's daily life less stressful and more enjoyable. Happy for anyone to message if you're interested.
Thanks Adam, for your reply, you are doing excellent work with your wife. It's awesome. I take on board what you are saying and live life to the fullest, but I have no family, no one ... Living... I probably have to go to a home ... Thus I was wondering what is the cut off point to decide to go to a home. I am fine with being alone, I just like to plan for the future.
Well firstly, with an attitude like you, all the power to you 💪. I think making a prediction of when the time is, is a tough one, personally I feel my wife's progression sort of plateaus then gets a little worse and plateaus again (thankfully enjoying a plateau at the moment 😊). But the data suggests that even for FA patients, progression is variable between people, so can't comment on SCA1. There are scales for FA (maybe applicable to other ataxias, km not sure) call mFARS scores, which measure ability (somewhat subjective) and I think natural history studies estimate a progression of '1-2 points per year' from what I understand, as to how many points means able to walk, wheelchair bound or requires care, I do not know unfortunately. They would definitely be correlated and I'm sure there are studies out there for that, but I haven't read them. Given your alone, I would imagine the 'time' would be based on how addiment you are in maintaining your independence and some measure of risk, ( e.g. falling and not being able to get help). On that point, one of the things I have in our home for my wife (who fell at home, withour her mobile on her person) was purchasing a Google home, it now allows her to call me (or someone) for help using her voice from almost anywhere in the house. Really has given us piece of mind ln that front. Note you can't call emergency numbers from Google.
Hi, I also have SCA1. I was diagnosed 10 years ago. 2018 I run my last half marathon. Afterwards I was dancing. Then I did not see/feel effects of ataxia. Then came lockdown and everything stopped and I am spiralling downhill fast. I feel stupid, I struggle walking, swallowing and coughing is getting worse. So like people have said, ataxia affects people very differently, but one of the main things I have noticed is importance of exercise, so use physio and just keep active
I used to skip rope with my neighbor 10 years ago now I use a walker. Ataxia is cruel and yes exercise is my mantra as well. I do physical therapy and speech and swallowing exercise. I think we just need to plod along with what ataxia throws at us
That’s the $64,000 question I think. Extremely variable for each individual. I did a slow progression for the first 18 months but the last 2-3 months have been a bitch. Started to use a walker this morning around the house interior. Fear of catastrophic fall is constant. I have two flights of stairs to the bedroom. On the very cusp of not being able to do the stairs. I have the same questions as you, what’s next?
I have some form of Ataxia and have had all the tests scans + genetic tests but they can't say what type I have. I have had symptoms over three years and things seem to get a little worse every year. They seem tp creep up on you. In 2017, when I realised something was wrong I was still walking unaided and went abroad on holiday and the same last year. Over 2020 to date I now need nordic poles to walk with outisde, can only walk short distances, my speech deteriorates over a conversation and am more tired.
As others said its different for everyone, Im just hoping I can plateau for a bit,
Seems to have got worse over last summer and this winter. I guess lockdown hasn't helped.
I exercise, pre-lockdown used to swim and go to gym. Now I use an exercise bike. Try and go out walking with my poles and do pilates every morning,
Some days you think is this making a difference as I don't see improvement but you need to stay positive. Exersice is also good for the mind and hopefully it helps maintain things
Ataxia what ever type you have is a horriable illness.
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