Should I exercise or "spare" my energie for the future?!

Hi there,

I was recently diagnosed with Cerebelar Ataxia, still waiting on the Genetics Doctor and I was told it is a progressive and degenerative condition. I stoped to gym and swimming almost completely as I feel very tired now. Ones say I should rest and not "push myself when tired" others say I should not stop or allow my body to "shut down". Mostly affected areas are: resistance, gait coordination and balance.

Should I go back to exercise?!

Walking?! Swimming (that I love) or do I need to lear to take it easy?!

Please advise!

8 Replies

oldestnewest
  • I'm no professional and you will get some of those replying, but I also have CA. I had a routine. Eat midday dinner (for energy) then go for a walk using my stick but I used to get so tired after dinner that would have to nap a couple of hours first. But yesterday I felt good first thing so walked early. No food first. It felt OK, but tiring on the way back. Use them or lose them is the boring saying. We've all heard it said. If I sit most of the day to do my puzzles or reading, my legs ache when I try to stand so it's got to be true hasn't it?

    I think you should try a little at a time of either. We all respond differently. Maybe you'll find something that suits.

  • Hi Sunshine-17. I would have thought swimming is one of the better exercises, I would keep it going. I'm a great believer that keeping active is most beneficial. The constant fatigue is annoying, sometimes doing something helps (I have started dance class and because you have to think about it, you "forget"about the fatigue), sometimes all you can do is sleep. Definitely keep up swimming and Keep doing things you enjoy (this may change as time goes by)

  • hi, I would def keep doing both of these activities if possible.

    you have to learn to balance the keep doing things with enough rest. And of course enjoy life too in whatever way you can.

    I'm a big believer in the use it or lose it. But resting is very important too. I find a two hour siesta every day keeps me ticking along.

    Alison xx

  • I've been diagnosed with CA recently as well, I'm 32 and i love going to the gym and swimming and climbing so i guess the fatigue element hasn't started to hit me yet, I'm affected on my gait and balance at the moment.

    In terms of exercise I guess it depends on how fatigued you feel, I believe that you need to keep strong and try to push yourself to that "hard" place 2-3 times a week, now what classifies are "hard" is up to you, if a 15-20 minute walk is that "hard" place then so be it. After a few weeks you might find that 20-25 minutes is your "hard" place.

    For me that's a hard weights session or a swim. It's all personal, but if anyone says to just lie down and not to bother don't believe them, we all have a long way to go but I think being strong, consistent and determined will definitely help in the long run.

  • Hi. I was diagnosed with degenerative CA years ago. I'm 46 yrs young. I am a firm believer in exercise within our own capability. Everyone's different. I find the key is not to overdo it. I get very fatigued but do what I can when I can. Keeps us strong in body & mind to deal with things. I used to go swimming (went for 3 years) but unfortunately it is too difficult for me now (I must add that it's not the swimming though - it's getting dressed etc) but I'd definitely keep going if able. Loved it. Brilliant exercise as it's non weight bearing. Swimming is recommended for ataxia. I also do stationary cycling too. Have always cycled & went spinning many years ago. I can only manage about 10 mins but it keeps my legs going. I can't walk without a rollator (walker) inside & outside now. A cane isn't enough now. I am convinced that small amounts of exercise really help my ataxia/symptoms. Keep doing a little but don't do too much. Don't wear yourself out. Do what you enjoy & feel able to do. The social aspect is crucial too. My motto is to do what I can whilst I can. I remain very positive. I've been to neurophysio lots & they've recommended balance exercises too. You tube is good - chair exercises. Exercise definitely keeps us all stronger so don't stop doing what you can. Stay safe.

  • I think it's clear, keep going, the more you do the more you can do.

    HTTPS://Ataxiafightback.wordpress.com for some other things to do.

    Nigel H

  • Hi, I had my diagnosis "upgraded" to MSA from Ataxia and like the others, firmly believe in using it whilst you can. I was previously very active and refuse to give in to the illness. I have recently walked Hadrian's Wall and wholeheartedly agree with listening to your body and not over doing it, the recovery time for us takes a lot longer

  • Dear all,

    I appreciate all ur input. Feeling extremely tired today, unable to cope. Just hope the helplessness goes away soon, :(

You may also like...