I have ataxia..(probably EA2 but not certain) and it comes and goes. After a hideous period last year when it came and stayed for a very long time I have been relatively ok for a while, so decided at 46 it was time to get a bit fitter and joined some exercise classes.
However, I find that after a fairly rigourous class (I can do most things as long as I don't have to balance!) the next day I am useless.. totally wobbly and sometimes wheelchair level wobbly.
Does anyone else find this? I don't want to not exercise as in every other way it is good for me!
Hiya! I have scar6, I used to go to exercise classes for years and had to give up the classes for the same reason as you. I continued to exercise at home with DVD s just doing the bits I could manage without doing too much e.g. little and often or longer easier, Beverly Callard, Rosemary Connolly, Yoga and Pilates, picked as to how I was feeling. These are too much for me now, so now I am going to Aquarobics, once in the pool Im ok
Hope this helps, listen to your body.
Elaine xx
I'm 45 and was diagnosed with SCA of unknown type so far despite numerous blood tests in 2007.
I used to mountain bike for many years but in the last two I used it less and less due to stabilty problems. So I bought a static exercise bike as I wanted to keep my fitness up but remaining safe. But I have found like yourself in the last 6 months after exercise I suffered for it with weak/wobbly legs and have wondered myself if I should continue. I have ocassionaly now with the lighter evenings gone for a walk instead as I don't want to just sit around and do nothing, ie sitting at work, sitting whilst driving because I know it's not good for me. I will have to ask my neurologist her thoughts.
I have ataxia always. But I did find out when I did do a little yoga at home I did feel more wobbly. But now at 53 things are not going good with my ataxia. I do believe you do have to keep your core strong. But I cant. Sorry no help!
I have FA and I guess i have a different response to exercise than you. I usually feel much better after I exercise and if I go a while without it I feel less stable than before.
Back when I first started to feel the effects of my FA I bought a lot of home gym equipment for weight training. I don't do cardio really just because being on an exercise bike for a while is very very boring.
I should say that I feel better and more stable after I recover a little from a workout. Legs especially after a weight workout feel weak and wobbly for a while but after an hour or so they feel better. Thats pretty much the same with any body part I do though. Ab and core work help a lot and aren't all that taxing so that is routine I do as much as possible.
I cant really say what the difference in exercise would be or if different types would affect you differently. The only thing that even comes to mind is that maybe the exercise is too much. Even though I use weights I might only do 100-200 or so repetitions for the entire workout which isn't a lot and it takes 45 minutes to an hour. An hour of weights might equate to 15 minutes of actual exercise and the rest as rest periods or time changing weights or time between exercises. So all I could think is to try to do very short periods of exercise and stop well before your exhausted. Maybe break up an hour of yoga or exercise bike up into 4 bouts of 15 minutes spread through the day. Im also a big believer in the use of creatine since it has so many beneficial effects for exercise and recovery by improving energy production in the muscles.
Hi, Macforme, In an odd way I'm really glad to read your and others' posts about how exercise makes you feel more wobbly or unstable. I apologize if my comment is offensive; I certainly do not mean it to be. I, too, have Ataxia (of a genetically undetermined type). Around 2009 I wrote an email to another online Ataxia support group (InterNAF) describing my own seemingly paradoxical response to exercising on a Gazelle Edge (a "glider" that simulates running or walking, depending on how fast you go). I had been exercising on the Gazelle Edge for roughly 2 1/2 years, usually running or walking at a rate of 4.2 mph (there's a little computer attached that provides this feedback). One day I exercised as usual, and the next day, found that my legs felt more wobbly. I was quite surprised. Have replicated this experience several times and have since stopped using the Gazelle Edge. Got mostly "keep up the good work" kind of responses; no one having a similar experience.
Recently I was on a "rehab" unit for a really nasty fall. I learned from the physical and occupational therapists there that even small exercises build up one's strength. You don't have to do a traditional workout. That was good news to me ("proved" by my own experience!). Hope this helps you too.
Yes I'm exactly like that I'm lucky as a police officer I have access to a 2 week rehab once a year. Last year I went after having a particularly bad winter and the physio;s found that I can only tolerate 20 mins of light exercise every day. If I do any more than that even when I feel well and able to, it brings on an attack.
After being quite fit and toned to hardly being able to walk up a long flight of stairs without my legs cramping and giving way I find it one of the hardest things to come to terms with.
But if its between a good release of endorphin's then a few days not moving or no attacks and low fitness levels I know which one I choosel
It sounds really good Michael but unfortunately as soon as I "push" my muscles they start cramping and weakening. Its very annoying but gentle exercise is the only way forward for me.
Interesting post. When I was first diagnosed with Ataxia, my neurologist sent me to physical therapy and my symptoms got worse after exercise. I went a few times but had to stop after continuously getting worse. I don't know the right answer to this, but exercise made me worse.
I have SCA 2 familial. I am very active and feel good after exercise. But I’ve seen that when I push myself with blanket cardio ( stationary cycle or treadmill ), my walking gets worse and I cannot have that.
What are your thoughts on that, I’d very much like to know.
My doctor suggested that fatigue deteriorates walking etc as we know. So to bring down the max heart rate ( not to push so hard) by 10 points for the next subsequent weeks while cycling (stationary bike).
I agree that too much of anything (including exercise) can be a detriment as well as beneficial. You should only do as much as your body lets you. FYI, exercise is not only cardio but strength training as well. Nevertheless, it is important to maintain your muscles and joints. The old expression is true. If you don’t use it you just might lose it!
You know buddy, I can understand that. In my opinion, doing something physical not only is tough to do but I have to think that it also affects us psychologically which also is tiring.
It may not be my ataxia but after 1/2 hour of stretching and 1/2 hour of seated cardio, I am really tired. And also have RA. Been thinking about getting floor bike peddles which I can use while watching TV. Anyone tried this?
When I had my recent bout of Sciatica I bought one of those portable bike pedal things for exercise. Didn’t work too well and didn’t care for it so I returned it.
