Help: Hi everyone in this cruel world I’m asking... - Ataxia UK

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weegiz12345
weegiz12345

Hi everyone in this cruel world I’m asking for your advice again. I saw my consultant in January and she said my progress in the last year hadn’t been much so she said my ataxia seemed to be progressing quite slowly. Since my visit my ataxia seems to have got a lot worse. My question is about getting up from any sort of seat. As you all know getting up from the floor is impossible. But getting up from a chair was ok. But now it’s really hard getting up and walking. After walking for a couple of minutes I find walking ok but the first couple of minutes I’ll never walk again. Anyone else get this and any advice.

Louise

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I do an exercise regularly to help with getting up from a chair.

With your arms outstretched sitting on a dining chair, push yourself up and then try to sit down again with control. It will be very difficult at first. I do this for 10 minutes twice a week. But if you just do as many as you can even if it's just two or three times and maybe every other day.

With time you should see an improvement. I know it's really hard, but I'm afraid I don't have any other advice :(

Keep motivated.

Since November I have been worse than usual. My balance became much worse and my gait more lopsided and as a result I kept trapping a nerve in my back. I was really ready to give up and go into a wheelchair full time (I have an electric assisted wh/c for going out). I have managed to remotivate myself and force myself to do my exercises and I have seen some improvement. I have to be really careful what I do now so that I don't put my back out.

Tell yourself that you can do it and believe that you can improve again. That this is a blip, rather than downward progression.

Good luck

Love

Alison xx

Thanks Alison I’ll try this thanks so much it’s really appreciated. Will let you know how I get on 😀

Louise xx

🥴 I’ve been experiencing similar for a while now myself. And it does seem to be less of an effort when I have exercise.

Thanks for your words. I have some exercises to do from wibbywobbly so I’ll try these and keep up going on my exercise bike.

I agree with wobbly wobbly - see it as a blip rather than a progression. We’re all up and down depending on fatigue levels, stress, infections etc. For us ‘up and down’ usually translates into staggering more and falling off chairs... similarly my physio advised me to strengthen my quads with squats (hold on to something or use a theraband if you’re too wobbly), kneeling and leaning back, and the exercise wibblywobbly mentions. I became a bit squat obsessed at first but has made an enormous difference. Really enormous. I used to break toilet seats... good luck x

Thanks for your kind words Mary am glad it’s not just me. This site really helps knowing I’m not the only one. Will try the exercises.

I am finding it more difficult to stand up when I get out of bed. Walking in the morning is very difficult and I do stretching exercises first, often it cramps my muscles.

Some days are better than others. Jan

Thanks Jan I agree with you mornings are the hardest. Some days are better than others but with each day I do find it harder. But I suppose it’s never going to get better 😔.

I feel much the same and I think it is sometimes not sleeping properly in these troubled times. Fatigue makes things so much worse. I am sometimes much more able just because I am not so tired. Going out in the garden helps me .. or just being outside .. even just 'watching' my husband do what I used to do .. Yes exercises are important but sometimes fatigue just wipes you out. take care and dont forget to smile. xx

Thanks Patsy,I think you’re right about sleeping, I’m not sleeping very well at the moment so that might be why I feel my walkings worse. Have retired just as this virus started so hopefully I’ll feel better with not having to work. Take care and be safe xx

bless . XX

Dear Weegiz12345, Getting up from a chair is is very hard for me. Once up, I need to get my barings before I'm able to move/walk with my rollator! Exercise makes everything a bit better, at least for me! I do sit to stand exercise four times a week. I'm up to 10 times now, as I had a total knee replacement last Summer which has made my quads very weak. After surgery, when I could start doing them again, I was lucky to be able to do 2. I used to be able to do them 20 times, then not at all due to chronic knee pain. Now that I don't have any more pain, I can do them again...,yay!As I said, I'm up to 10 times now but would like to get up to at least 20 times, maybe even more! I put my locked rollator in front of me, sit on a dining room chair, cross my arms and away I go. If I start to lose my balance, I have may rolator to grab onto. I also do leg lift with weights on my ankles, as I can get down on the carpeted floor! It's the getting back up that's difficult...,ha! I grab onto the couch and literally pull myself up! I also do squats, holding onto something, of course! My best to you..., ;o)

Thanks February you sound so much like me grab onto the couch then pull yourself up. I must say doing the stand to sit exercises has helped. I think my knees are ok now, am so glad you have no pain now though. I know this will sound as if I’m stupid, I have the stand to sit exercises off to a tee but can you explain the other 2 you do I’m scared of doing them wrong so would like to be told like I’m a child 🙄thanks for the reply.

Louise xx

The leg lifts with ankle weights are very easy to do. I sit on the carpeted floor, put 3 LB ankle weight on each ankle, lay down on my back and lift my leg about eight inches off the floor, then do the other leg. I do about 30 reps (in increments of 10, as then I switch legs) for each leg. For squats, I hold onto the back of the couch and dip down about halfway bending my knees at the same time. I do this about 20-30 times. Hope I explain this alright. If not, please let me know and I'll try to explain differently! Start slowly until your muscles get use to these exercises, do what you can please! ;o)

Are you laying on your back with your legs straight?

I'm always keen to try more exercises

Xx

Dear WW-Wibblywobbly, Yes, I lay on my back with my legs straight and keep them straight while I lift each leg individually and not to quickly, about 8 inches off the floor. Also, I'm going to try the exercise you suggested, as it sounds so good! ;o)

Thanks February,

I'm going to give that one a go. Not today though. I did a yoga session through video link this morning and I'm absolutely wiped out. My friend's daughter is a yoga teacher so she did the class at my level.

But my god, I've got muscles aching that I forgot I even had!!!! Aching in a good worked way though 👍

Xx

Good for you for doing yoga, as that's something I haven't been able to do for a few years now (my balance is so compromised). Yes, try other exercises when you're up to it. Just remember to start out slowly with repetitions! Have fun! ;o)

I was shattered for the rest of the day yesterday and I'm still exhausted today. Never mind it'll do me good in the long run, but you're right little by little is best. I've over done it with the yoga really.

It was all floor exercises, simple ones really. I used to do yoga years ago and it always made me feel great - but even then I was useless at the balancing positions - now we know why!!! Blinkin Ataxia 😬

Hi Louise,

Another exercise for you and anyone else to try is

Find a steady piece of furniture to hold onto. You may have to experiment to find the right height. I use a large old sideboard

Stand sideways on to your piece of furniture and hold it with hand. Standing on one leg move your other leg out sideways and then back in again. Make sure the movement is slow so that you don't use the momentum. The standing leg should be kept slightly bent so that you don't damage your knees. Repeat this movement at least 10 times.

Then do the same movement but out in front of you at least 10 repititions.

Then do the same movement but going behind you at least 10 repititions. I find this one the hardest!

Remember to keep your legs slightly bent and do the movement slowly. You can keep both legs slightly bent - I do

Then turn around and do the other leg.

This exercise helps to strengthen the exterior and back of the thigh muscles which will help to make walking a little easier.

I have very little muscle there apparently

Good luck for those who want to give it a go

Love

Alison xx

As it has become more difficult for me to get up, from a sitting position, the last few years, my daughter bought me a big, lift 🪑 chair, that raises me up to nearly the standing position, and lowers me down, with an electric control button, so that I don’t have to ‘plop’ down. I’m unable to ease myself up out of a chair, and sit down slowly, to get into chair, due to stiffness, and cogwheel rigidity! I have Cerebellar Ataxia, and Parkinson’s Disease, diagnoses. So, this chair has made my life much easier. To help, I do range of motion exercises, for legs and arms, every day. When the chair brings me up to near the standing position, I am usually wobbly starting out walking, and my balance is not good. So, I have to get my bearings, as I start out. I usually have to shuffle forward slowly, and then I hang onto nearby soft couch/chair furniture, if I start to lose my balance.

Thanks for your comments, am going to try as many exercises as I can as they see to help lots of people on here.

My physio told me to do exercises on bed instead of floor but when I get on bed I prefer to listen to hypnotherapy recording. All good intentions ha..

I’ll try on the floor first and if nothing helps will try the bed, thanks Patsy 😀

easier not to fall asleep on the floor ha! good luck x

Dear Patsy, I NEVER thought of doing exercises on the bed...,DUH!...,ha! That's a wonderful idea, as I'm going to try that! As is, I have a difficult time getting down on the floor now, but getting up is even MORE difficult! Once I'm down, I worry will I be able to get up? Or will I be stuck on the floor forever...,ha! ;o)

yes .. it's painful too xx not sure when effort becomes pain! keep smiling x

Interesting advice and comments,Ido have difficulty getting my legs to work first thing in the morning,I sleep very well ,but find after about 3pm.balanse gait and co ordination certainly deteriorates,does anyone else find this ?

Like Patsy,physio exercises are easier to do on the bed rather than the floor.

Best wishes

Yes, definitely! And it takes me literally hours in the morning to be able to move, as I'm so stiff! A hazard of ataxia for sure, at least for me..., ha! ;o)

I find m y balance etc worse in the morning. I do find some of the exercises make getting up from a chair easier. Thanks for your post.

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