Research into Parkinsons clearly show the benefit of exercise. I wonder if similar research has been carried out for Ataxia.
Fortunately I am able to exercise strenuously and regularly doing both cardio and weight lifting. My ataxia, to the amazement of my neurologist, does not seem to have progressed much if at all over the past three years.
It may be due to bloody mindedness or luck but I cannot help but feel that exercise has greatly exacerbated my problem.
Athlete you are doing something right and good luck to you.
Can you say
what type of exercise works for you?
I do Pilates and a bit of yoga ( DVDs)
Yoga sometimes needs balance which is impossible!
Donna
Hi Anna,
I lift weights using machines as I lack the balance for free weights about 3X weekly. I do 12 repetitions in each set with three repeats. Weights are manageable as I am not trying to build muscle but to retain strength, flexibility, endurance and muscle tone. Each session is preceded by a 20 minute warm up on a rowing machine.
Cardio is done 3x weekly, golf in the summer, walking the course, with the aid of a push cart. During the winter either a 6 km. walk outside using a walker, weather permitting, or an hour walking on the indoor track at my local “y” sometimes interspersed with exercise on an elliptical machine and a stationery cycle. I can usually walk with a pronged cane however I find that using a walker improves muscle memory including balance, posture and gait although the effects diminish over time if I don’t use the walker regularly.
I tried chair Yoga designed for handicapped people and while I could do the exercises it wasn’t for me. I do think however for those that enjoy it that Yoga can be as beneficial as any other type of exercise.
I think the main thing is to keep working within the limits of our ability which, at least in my experience, will slow the progress of Ataxia. Of course we are all different and while I hope my Ataxia will not progress or do so very slowly time will tell. But, so far, so good.
regards,
P.S. I have always exercised strenuously and looking back I had balance problems all of my life which were not severe and did not interfere with my life. They manifested themselves when I played a sport, hockey, skiing etc. which required me to strap something on my feet. It didn’t stop me from participating but I was never very good at these sports. My ataxia started to become problematic about 3 years ago so basically it was dormant for most of my life.
This research
can be a benefit to all other conditions
Hi athlete, your reply really took my breath away and made me realise that I need to try harder. I’ve been stuck in my comfort zone. Thank you so much.
Have a great holiday.
Not sure if you saw this recent post by me. It was my introduction. Nevertheless, here it is again.
I’m new here but I have been a regular contributor at the old NAF forum BB. Nevertheless, please let me introduce myself with a history of sorts. I am now 71 years old and I first noticed that something was wrong when I was 21. So, I have been dealing with this Ataxia [SCA] for over 50 years. I have never been interested in what type that I have so never did any genetic tests but did have MRIs. I’m always interested regarding therapies and of course, cures as is everyone else here.
My symptoms include but not limited to are balance problems, gait, nystagmus, coordination, dysarthia, urinary frequency as if I had BPH [I don’t have BPH] and dry skin. I am still ambulatory with full use of my arms and legs. I attribute that last part to the fact that I exercise almost every day and I have been doing that for years. Being as active as you can is imperative for our illness. Not only does it help with your body but it also helps keep depression at bay.
I belong to LA Fitness which is a gym for those who don’t know. In my gym are some members who come in with walkers and even wheelchairs. There is equipment for all people. Plus all the “healthy” members are very willing to help those who need help so you have NO excuses for being sedentary. Plus, there are exercises online for folks in wheelchairs,
I was given great advice years ago from another patient. Either you can let the illness overwhelm you or you can continually try to overwhelm it. I chose the latter and so should you.
As NIKE used to say “Just do it!”
Hi Chas,
Our history is similar; I have hammer toes, bradycardia requiring a pacemker, afib, urinary frequency all likely arising from Ataxia. The llist of potentially associated problems is a long one and generally associated with the type of Ataxia one has.
I don’t know what variation I have am unlikely to find out and am not particularly interested. I, like you, believe that a lifetime of exercise and playing sports delayed the progression of my Ataxia. I always knew my balance was deficient even from a young age but it certainly didn’t affect my life nor did I consider it anything out of the ordinary until my condition started to worse about 5 years ago and took 3 years to be diagnosed. I have experienced little on nor progression in the last 3 years and my neurologist is completely puzzled. Again I think it is the exercise although it could be sheer bloody mindedness or good luck. Who knows?
I attend the local “Y” and they have similar amenities to the gym you attend including walkers for those who need them and are always willing to assist those with handicaps. It’s never too late to start but before starting an ambitious programme I would get medical clearance as the to the risks any associated problems may present so one can work into it at a s safe and comfortable pace.
Best wishes to you and Anna in dealing with your Ataxia.
Hi Athlete,
Many thanks for the reply. Like you, I had neurological problems when I started adult life but I dealt with them and they weren’t too bad but were a nuisance nevertheless. I also play golf even today. I don’t walk the course anymore [ride a cart] but am still out there however not playing as well as I used to. But not bad either! Then just over 4 years ago, I had an accident while riding in a golf cart. I wasn’t doing anything wrong like speeding or driving dangerously but the cart started hydroplaning and spinning and my friend jumped out. The cart flipped over and I hit the ground pretty hard. I went to the hospital with a dislocated left shoulder. The reason I’m telling you this is since that accident my Ataxia symptoms have really progressed. But I WILL NOT stop and I WILL do it! Or at least try. I was a pretty good athlete and I had plans to play professional baseball. Of course, you also need good luck as well as talent. But that’s in the past.
As for doctors telling you what you can or cannot do, I kinda have a problem with that. It’s your body and they can’t feel what you’re feeling. So, I think it should be up to the individual [mostly] regarding exercise and such. Obviously, if something is bad or hurts, then don’t do it. The body is a “strange” thing and it constantly needs feeding - I’m not just talking about food here. Exercise is not a cure but it is definitely needed.
Best to everyone here. Just remember, hate is a wasted emotion. So don’t waste your time by cursing at your Ataxia. It is what it is!
Thanks Chas,
I try very hard to prevent falls because I do believe they can provoke progression, although I could be wrong. I have difficulty navigating slippery, hard surfaces, even asphalt, particularly when going down slopes and the golf course i play on is hilly. Fortunately my golf partners help me navigate and stay close in these instances in case i get into trouble. i find walking on level grass with the pushcart to be no problem although I am still aware of the Ataxia but perhaps less fearful of falling on a soft surface.
I completely agree with you about doctors; I listen to my body not to them.
I tell my physicians that my job is to stay out of their office and their job is to help me do so. I welcome any insight they may have but will verify the evidence before agreeing to any medical intervention. You can imagine the look on many of their faces when they hear this.
athlete,
I agree with you about falls. Besides the possibility of getting hurt by the fall, it’s also very possible that you will exacerbate the Ataxia. My problem, especially with the eyes and balance, has made it difficult going down stairs - not so much going up. Also difficult is going down to lie on a floor and then trying to get up again. There needs to be something right there for me to hold on to for my balance.
I also have good friends but they really can’t understand. However, I do understand their not understanding. They say the can but in actuality, no. All they have is their good health to compare it to. They can’t know what it’s like to be in constant unbalance and such. They might have an episode of something once in a while but it’s not the same thing because it does go away. So, I don’t talk about my condition with them very often. I just do the best that I can do. That’s why sites like this are so important!
Keep up the good work.
EDIT: It’s nice to hear from you athlete but I would also like to hear from fellow Ataxians regarding their feelings. So please post folks.
I have found exercise including yoga essential for slowing progression of my ataxia, also diet .Having the occasional glass of wine or a spirit does not help my balance and walking and my wife loves the fact I am the none drinking driver now. I go to the gym at lest twice a week and a yoga class once a week and the socialization of the yoga group has become important to me also.
I am glad to hear that you find exercise including yoga to be helpfull and there is no doubt of the beneficial aspects of socialization. Exercise and socialization have have also helped me greatly; I would like to practice yoga but can only do a modified version called “chair yoga” which unfortunately I lack the patience for. I agree with you on the alcohol although I still take the occasional drink.
best wishes