Ataxia UK
2,503 members • 2,319 posts

Thank you

ceri52, nigelrheath, Missile, dlhfeldman, jneilw51 & medea (I hope I haven't missed anyone out!

Thank you all 🙂 for your replies, I never expected to receive so many!

All of you have certainly helped lift my mood at the very least and now I'm feeling much more positive.

It was a huge relief to find out there are so many support groups in my area & there's even a Neurologist with a special interest in Ataxia (thanks for his name - I've made a note of it)! 😄 Very kind of you all!!!

Many warm regards


"Commit Random Acts of Kindness"

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Craig, I don't know where you live but there are specialist in CA at southamton hospital?


Dear CraiglB, For some reason or another I missed your post (?), so I went back and read it. First of all, I'd like to say "hi" and welcome you to this site! Although I live in the US, in the State of Michigan, I find this site extremely helpful. In the US, there's also a site called "Living With Ataxia" which I'm on. Check it out, if you haven't already! Anyway, I was formally diagnosed with Sporadic Cerebellar Ataxia (unknown cause at this point, symptoms 24/7) twelve years ago, but started noticing very minor symptoms about eight years before diagnosis, for a grand total of twenty years...,ha! My neurologist says it's very important to exercise (safely, of course) for strength and balance (even if you do it slowly, like I do...,ha!). He said the key to this is repetition. For instance, I stand at the ledge between my kitchen and family room so I have something to grab onto in case I start to fall. I bend one knee and hold up my foot for as many seconds as I can (without holding on) and then do the other leg. I keep trying to up the seconds, as this is the repetition part. Anything I do, I keep trying to do a bit more of. My neurologist says there's been successful studies on mice where their brains form new neural pathways in this way. Therefore, whatever you can do in the form of exercise (safely) is beneficial! I use a cane (stick) when I leave my home to prevent falls, but am able to walk, extremely carefully, in my home without it. I also have an Accsess Active Rollator for pleasure walking outside (weather permitting). Sometimes I just go to a store that has a cart to use and browse around. You said you don't drive, so maybe you can take walks outdoors with a rollator? Anything you can do to keep moving and be active is helpful. My neurologist said to be as active, safely of course, as possible (easy for him to say...,ha!). The net is a good place to Google exercises for strength and balance. Also Nigel has an excellant site (he already mentioned it to you) with great exercises, as well as useful information on it! I also try to eat as healthy as possible, lots of fruit and veggies, no processed foods and very little sugar. Beyond that, try to keep a positive attitude, as your not alone in your journey! Talk about being loooong winded....,ha!!! My best to you...,;o)

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