Types of exercise that induce ataxia (EA)

[AnnaP2016]

I have symptoms of EA that last for minutes to hours. Still waiting for the genetic result at the moment. I used to be a keen cyclist regularly clocking up >100 miles a week. Since my first episode last year I had not been back on my bike till yesterday. I feel a lot better these couple of months so I decided to give it a try. Maybe I am not as good as I used to be but in general I seemed fine on the bike. I had no dizziness when I am on the bike and felt pretty awesome. I only cycled 1.5 miles between my house and the station. However right after I get off my bike I became instantly dizzy with gait difficulty. I know EA can be triggered by exercise but it seems to be specific types of exercise. I also swim regularly (45min non-stop) but never had an episode from swimming. I wonder if anyone also experience something similar? Only specific type of exercise that makes ataxia worse? The funny thing is that I had no symptoms when on the bike but almost instantly felt a lot worse after getting off the bike. Very strange...I am not sure if cycling is a good thing since I had minimal symptoms when I am on the bike...

[wildstyler]

I have cerebellar ataxia and would recommend that you keep doing whatever exercises you are doing .your body will get used to your exercise.I still run though not as much ( I've done 4 Marathons about 20 1/2 Marathons etc ) now I run about 10 miles a week and go to the gym 3 times a week.I am 68 please remember that it how you deal with it NOT what it is. As someone else on this site said you might have ataxia but ataxia doesn't have you.

[Ginger1]

Hi

I used to go spinning. Can't do that now. Use a recumbent static bike in the house. Personally I wouldn't & couldn't go on the road. I usually do about 10 mins or just over. Perhaps you are pushing yourself too much? I do know if I overdo it i can feel worse.

As for swimming. I went for about 3 years. Loved it. Maybe this helps with coordination? It is non weight bearing too so maybe this is why you don't feel any I'll effects afterwards?

I do lots of exercise at home including stretching etc.

I have cerebellar ataxia. I've bought a bodyblade (look at Amazon and/or you tube) as vibration is meant to help.

Although my neurologists say exercise doesn't reverse problems we encounter it'll make us stronger mentally & physically which in turn helps us cope!

Kudos to you for staying active.🤗

[AnnaP2016 in reply to Ginger1]

Thanks! I've only just had the problems since last year so still a newbie on this. It's not so much that I'm trying to stay active (which is extremely important) but I'm trying to figure out when and why I have an episode. To my great surprise, motor skills such as cycling and swimming haven't been compromised that much, only walking seems to be the difficult one! But cycling has a strong after-effect which I'm still recovering from today. I don't think it's the amount of exercise that triggers symptoms but the types of exercise... If a neurologist can carry out more diverse tests, rather than the standard ones, they may discover new insights. just like the story in 2010 where doctors reported a guy with severe Parkinson was able to cycle proficiently, I thought that was incredible...btw that bodyblade looks like real fun!! I can imagine it might help somehow, perhaps just richer proprioceptive feedback.

[AnnaP2016]

Wow that is a lot of exercise! I don't think my body was ever built for strenuous exercise but I try to stay active for the the happy hormone endorphins Thanks for the encouragement I sure will keep it up. I'm just not sure if different types of exercise will make problems worse or better. Perhaps I will convert my bicycle into tricycle so it does not place too much demands on my cerebellum. It's just quite interesting since I find walking more difficult than most forms of exercise. I can run (haven't tried running long distance), bike, swim but cannot walk properly. Utterly counterintuitive. Brain functions never ceases to amaze me.

[Cartax2 in reply to AnnaP2016]

Only new to this site, but had to reply to this post. I too have Ataxia and can run and even sprint quite fast for short distances, mountain bike 10 miles without difficulty, but have difficulty walking and balancing afterwrards. The harder i go - the worse the after effects. Feel great while on the bike.

My walking is perfect first thing in the morning but deteriorates badly as the day progresses.

[AnnaP2016 in reply to Cartax2]

Yeah the exercise also triggers symptoms/episodes for me. The only exception is swimming. I can swim long distance without having an attack afterwards. I don't try to run/ cycle anymore. My beautiful bike now just sitting in the storage 😩 Still can't bring myself to sell it yet...

[Ginger1]

I'm the same really. My main objective is to keep going & moving my legs. I can hardly walk now but my trusty walker (rollator) helps me tremendously. I am always trying to train my brain & do lots of puzzles too. As you say the 'feel good ' factor - endorphins!

I'm not a doctor but maybe it's the muscles working overtime in the legs during cycling? that's why I don't do too much. my body tells me & I'm more tired the day after ! I don't' want to tire myself out! Counter productive! During swimming other muscles are used at the same time so maybe ur circulation & nerves are more stimulated? Just a thought. I'm no expert!

If u suffer with cramp try tonic water and bananas. Brill. I'm also eating lots of turmeric. a wonder spice! It's also gr8 for cramp too along with loads of other things. Google it unless you already know of course.!

It's strange that some forms of exercise hinder & others don't. I guess we're all different & what suits 1 person doesn't suit another?!

I've been suffering from ataxia quite a long time so I know what I can & can't do. The amount of exercise & energy expended can definitely have a negative effect. Our bodies are working overtime. 10 mins of cycling is probably more than double of a person without ataxia. any exercise is accelerated so I understand as we're trying to compensate & the nervous system isn't working correctly.