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.
Hi my name is DJ. I have just joined this network. I hope I can meet friends. Every time my spasms start again something is different, they are far worse. I am experiencing more weakness and sometimes I can’t control my arms and legs. I now use a walker. My left leg often gives out when I walk a distance of only a few feet. Also my legs often knock together or go up and down uncontrollably. Unexpected touch or a loud noise will bring on a spasm. Today as with any of my medical problems, being cancer free for ten and a half years, my involuntary movements with the dendrites not making connections with my brain stem, seem to help with exercise, and my sleep apnea with my small airway disease, keeping a positive attitude is most important. Attitude is everything.
Welcome dj2018. If I can give you the best advice I have regarding Ataxia [I’ve had it for over 50 years] it’s this: STAY AS MOBILE AS YOU CAN, KEEP MOVING, EXERCISE AND NEVER GIVE UP!
Welcome, I wish I had your spunk. The only “thing” I can do is the sauna. After many PT, I find that any exercise I do makes me weaker and miserable. No matter how long I go about doing exercises, even lightly, I am in worst state then when not doing the exercise at all. In the good old days, I would go to the gym 3 times a week and on every conceivable machine they had. Glad it is working for you and welcome again to the forum.
I’m very sorry to hear of your present condition. I’ve been working out for a good part of my life. Don’t know if that’s the reason for my present condition but don’t look a gift horse in the mouth [sort of thing]. I have to think that your tiredness after any sort of exercise is because your body is kinda sedentary presently. If you can , try walking up and down stairs so your body develops some sort of endurance. Just my thoughts.
I am just finishing up a clinical trial and have another option left. I am going to zap my head using a tDCS or Direct Current Stimulation device. I read some interesting documents on the use for anybody who has Ataxia. It is still preliminary but hey what have I got to lose. Does anybody on this forum have any experience using tDCS?
Hi and welcome. It looks like you’ve found what definitely works for you 
It’s good to know you’re still mobile so many years after diagnosis 
xB