I have cerebellar ataxia and my balance is really bad I do balance exercises ever day and it’s not getting any better. What suggestions do you guys and girls have for me.
I found going to the gym twice a week helps .it was doctor referral and the instructor deals with people with ataxia, ms,strokes,. Now my legs get stronger better the balance.
I often wonder if my hideous balance issues were exacerbated by a build up of fluid (CSF)on my on my brain (hydrocephalus) or “chicken and egg.” - which came first- the mangled cerebellum or the fluid. My MRI showed the overflow in my L ventricle, hence a shunt implant. I can’t say my balance got any better, but it’s no worse. All in all, I don’t know who can help us, inc. Doc’s. I swim with weights every day. It’s awesome to feel normal.
I've found that improving the core and arm muscles help me be more stable. I use chair/bed yoga 3 times a week and use a strength-band 3 times a week. In the past, I fell multiple times, so I use a cane for support now. Now that it is warmer I also walk twice a week. I use 2 trekking/walking poles when I walk. Most sessions are about 20 min. These aren't too boring, & it doesn't make me too tired. For me, my balance gets bad when I'm tired.
I have the same issues. Remember that ANY work you do may provide the benefit of at least slowing the advancing of Ataxia. There is no cure or even easy diagnosis - stay tough!
i did pilates but it just takes time.
I have noticed certain things that affect my balance: weather…if it rains, I have a bad day. Aspartame and processed foods…terrible for me! Change of climate. I find that if I travel, it takes a day or two for me to get my “land legs” back. Sitting too long. If I carefully stand and do stretching exercises, it’s not too bad. After twenty seven years I’m praying that this disease will leave me as suddenly as it appeared…and I pray everyday!
BTW, I find it impossible to use a cane. I had a four legged one and almost killed myself with it.
Dear Carious Bob, I was diagnosed eleven years ago and my balance has gotten progressively worse over the years. I exercise for strength and balance every day (sometimes I go to a wellnesss center and use weight machines and a NuStep). I also stretch my muscles daily and do Frenkel exercises. My neurologist has told me to be as active as possible! I bought an Access Active Rollator on Amazon and LOVE it for pleasure walking outside (when the weather is nice). It's not easy to do these things, but I push myself, as I want to stay as strong and independent as possible, for as long as I can! I also try to eat as healthy as possible, no processed foods,very little dairy and refined sugar. Lots of fresh fruit and veggies! ;o)
I have found that core and shoulder strengthening help with my balance, speech, and hands. I walk with a forearm crutch. I go to the YMCA several days a week and ot twice a week. Staying active is key. I fight this disease like its a full time job!
As someone who also suffers from a progressive ataxia, I find strength building excercises help, as coping with heavy weights and building muscle helps you copy with balance and weaknesses.
You must remember that even if you don't improve, you could be worse if you didn't exercise.
I’m going to ask my instructor tomorrow about core and shoulder stevi.I’ve just Googled it watched the video looks positive .
I go to the gym a few times a week and do the elliptical and weights on machines. I do gentle yoga (seated poses) twice a week. Now I am going to PT twice a week too. Plus I still can walk the dog! My diagnosis is cerebellum ataxia with an underlying cause as MSA and my body has lots of balance issues. My ataxia is progressing but I think all the activity has really made the progression slow! So movement is key. Anything you enjoy! Dancing, the gym....all is good!
My fellow ataxians all have great suggestions. Follow any program that you feel most comfortable with but the point is to KEEP MOVING. I do leg exercises everynight and go to an exercise class once per week called “chair flex and stretch” (it actually a class for people with arthritis). From my understanding cerebullar ataxia almost never improves but I am positive that if I didn’t keep moving- I’d be so bad that I’d be dependant on someone or be in a wheelchair.
A positive attitude is a MUST!
Come here to read, discuss or share. This is a great resource and there are such great people here!! Happy Easter, everyone!
I've been working with a physical therapist that works with neuro patients and they have been helping a lot. They not only help with balance but tightening your core (core is neck to butt) with shoulders back and down and also balancing yourself depending on the position.
You may never get your balance back but they can show you how your body works and what to do with it.
I’ve cut out any soda and because of that the aspartame headaches are gone. I try to keep processed foods to a minimum. I find eating soy, soy products (there is a lot hidden in frozen foods) makes my balance issues more pronounced at least for a couple of hours. I feel wobbly & probably look like I am drunk. (I seldom drink any more)
bobo, i find on bad days my cane straightens me right up. my gait & my balance improve a lot.