weak legs: I have had gluton ataxia for 5 years... - Ataxia UK

Ataxia UK

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weak legs

golfingsue
golfingsue

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

27 Replies

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?

golfingsue
golfingsue in reply to Brommie

yes i have been really stricked avoiding gluten for a year.I had brain scan january & my consultant said it has improved but i feel no different if anything worse,

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.

Peter

Libra7
Libra7 in reply to chelpet

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

chelpet
chelpet in reply to Libra7

Hi, the contact details you need for the Balance and Strength classes, which I find incredibly helpful are admin@stayactive4life.co.uk . 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.

Libra7
Libra7 in reply to chelpet

Thank you so much for the information. I will look into it.

golfingsue
golfingsue in reply to chelpet

yes please i would be interested in the classes,thanks Sue

chelpet
chelpet in reply to golfingsue

Necessary links for the Balance and Strength classes: admin@stayactive4life.co.uk and address email to Aran Summers. Pilates classes which I also find very useful, contact Sonia on https//:bodypotential.co.uk/

chelpet
chelpet in reply to golfingsue

Contact Aran Summers on admin@stayactive4life.co.uk about the Balance and Strength classes - and also contact Sonia re Pilates classes on https//:bodypotential.co.uk/

Brommie
Brommie in reply to chelpet

Those classes sound really good, I would greatly appreciate it if you would let me know how I can join

Stacey

chelpet
chelpet in reply to Brommie

Email Aran Summers on admin@stayactive4life.co.uk about the Balance and Strength classes; and also contact Sonia on https//:bodypotential.co.uk about the Pilates classes.

chelpet
chelpet in reply to Brommie

Email Aran Summers about the Balance and Strength classes, on admin@stayactive4life.co.uk , and for the Pilates classes, contact Sonia on https//:bodypotential.co.uk/

Brommie
Brommie in reply to chelpet

Thanks so much, I think joining a group would be good for me.

chelpet
chelpet in reply to Brommie

Is there an Ataxia support group local to you?

Brommie
Brommie in reply to chelpet

No, I live in Boston.

chelpet
chelpet in reply to Brommie

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.

Brommie
Brommie in reply to chelpet

That’s a good idea, to be truthful I probably wouldn’t have the confidence to attend a group

Arlo20
Arlo20 in reply to chelpet

Hi I'm really interested in your exercises as due to balance probs finding it very difficult.

chelpet
chelpet in reply to Arlo20

Email Aran Summers on admin@stayactive.co.uk about the Balance and Strength classes; and contact Sonia on https//:body potential.co.uk about Pilates classes

Arlo20
Arlo20 in reply to chelpet

Thank you.

chelpet
chelpet in reply to Arlo20

No problem, I sincerely hope it works for you. Remember, it's not a 'quick fix', but both Balance and Pilates classes have worked well for me.

Post any feedback!!! We'd all find it helpful.

Arlo20
Arlo20 in reply to chelpet

I will for sure,once again many thanks.

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?

not much but helps me sleep at night.knockes me out in the day

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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