I have had gluton ataxia for 5 years but this year really deteriated.my legs are so weak ,i can only stand for about 10 min & then have to sit down & can only walk round house abit with 3 wheeler.Balance is so poor.so tied all the time yet i sleep well.My voice is slurring & swallowing tablets is difficult as easly choke,I do leg stretch exercises everyday & 15 min on my walking machine but don't do much,My medication is 2 baclafen at night but can't take in the day as knocks me out.Any advice ?Sue
weak legs: I have had gluton ataxia for 5 years... - Ataxia UK
I had a chat with my Consultant this week and she has recommended vitamin D3. My Ataxia seems to have got far worse this year and she said it has for most people. Are you managing to avoid gluten?
I have Cerebellar Ataxia. I was diagnosed about 6 years ago, and weak legs and dodgy balance are very much part of my symptoms.
As well as being a keen gardener, I attend regular Balance and Strength, and Pilates classes, 4 or 5 days a week, for about an hour a day. ( The classes are inevitably online, in these Lockdown days.)
The classes, as well as enormously strengthening my legs and body, and vastly improving my balance, have, through the challenge they constantly provide, have massively improved my physical and mental confidence.
I can supply contact details for classes, if desired.
Hi Peter - I would be interested to find out more about the classes you do each day. I have set myself a short programme of exercises which I do each day but I’m sure I could do more! I find a lot of the exercises on line involve getting down on the floor which I can’t do ( getting up again is the issue). Can you post the links. Thank you. Barbara
Hi, the contact details you need for the Balance and Strength classes, which I find incredibly helpful are firstname.lastname@example.org . Write to Aran Summers on that address, (he and his wife Marilin take turns in leading the classes on Zoom, and also provide videos of the exercises).
As regards the Pilates, which I also find incredibly helpful, contact Sonia on bodypotential.co.uk.
yes please i would be interested in the classes,thanks Sue
Necessary links for the Balance and Strength classes: email@example.com and address email to Aran Summers. Pilates classes which I also find very useful, contact Sonia on https//:bodypotential.co.uk/
Those classes sound really good, I would greatly appreciate it if you would let me know how I can join
Email Aran Summers on firstname.lastname@example.org about the Balance and Strength classes; and also contact Sonia on https//:bodypotential.co.uk about the Pilates classes.
Email Aran Summers about the Balance and Strength classes, on email@example.com , and for the Pilates classes, contact Sonia on https//:bodypotential.co.uk/
Thanks so much, I think joining a group would be good for me.
Is there an Ataxia support group local to you?
No, I live in Boston.
Do you have internet? I ask, because meeting online, is what groups have to do, in this Lockdown period. Contact Ataxia UK for contact info on nearest groups.
Hi I'm really interested in your exercises as due to balance probs finding it very difficult.
Email Aran Summers on firstname.lastname@example.org about the Balance and Strength classes; and contact Sonia on https//:body potential.co.uk about Pilates classes
Sorry to hear that.
Have you tried B12 therapy?
Would also suggest magnesium and vitamin D
I'm a newbie here but I notice diet plays a big part in energy. Being a sugar addict I had to cut my cravings down drastically. Also whatever exercise you can build up is good. When I thought I had Parkinson's I learned a lot from them on HU that I think still applies to Ataxia. Keep moving is their motto. I have poor swallowing too. Sometimes swallowing things with something creamier than water helps. I use a thicker type of nut milk and chew my bigger pills if they aren't horrible.
do you find the baclofen helps?
Try breathing like this in bed, breathe in, for 4 seconds, exhale for 7, do this 3 times, it really does work! I used to take baclofen, but like you relied on it for helping me sleep, I dont take it now, made me feel worse in the day, weak,shaky, and all I did was sit, try it, I have b12 injections every 10 weeks, that is all I have, am willing to try most things that will help with sca2, still waiting for a miracle!
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