Hi, I have Late Onset Idiopathic Cerebellar Ataxia, mild, whatever that means!! Can walk okay at the moment, but wobbly at times, not in a straight line. My question is, recently I have huge problems getting up from low chairs, or, as has just happened, cleaning the kitchen floor! I knelt down to clean the floor, couldn't get back up, even with the help of kitchen units, and had to crawl into the hall, and eventually managed using the stairs, and the banister post! Is this something to do with ataxia, muscle weakness in the front of my legs I guess, or is this something entirely different? I find upright chairs okay to get up from but low chairs, or deckchairs for example, would be a complete disaster! Let me know what you think, thanks, Jill

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  • Hi Jill๐Ÿ˜Š

    Welcome to the wonderful world of coping with ataxia๐Ÿ˜‰

    I wouldn't mind betting quite a few people agree with your post, I do anyway๐Ÿ™‚

    Unless I actually fall down, I'm inclined to spend as little time as possible on the

    floor, getting back up is ๐Ÿ˜!

    If the only alternative is a low chair, I'm inclined to stay standing, providing there's

    support of some kind. My lounge has 2 sofas, my husband sits on the feather filled

    sofa, I sit on the hard as a rock sofa๐Ÿ˜ŠxB

  • My hubby knelt down to pull out the washer plug and couldn't get back up. His first, serious 'alarm bell' for ataxia. Yes, high seats are a necessity, as are beds. Best wishes! ๐ŸŒž๐Ÿ˜‹๐Ÿ˜‹

  • Can I ask is his ataxia 'mild'? I can do most things fairly okay although stairs without a handrail are a problem as is uneven ground, but I didn't initially associate not being able to get up with ataxia. Thanks

  • Dave has SCA6, which is hereditary. Don't think can class it as mild ๐Ÿ˜€๐Ÿ˜€. He uses a 4 wheel walker. Stairs are impossible! Uneven ground is also a no go. Can't make himself a coffee. Can't shower himself. Can still dress himself with difficulty. 8 years ago he climbed Ben Nevis. He has also been to Everest base camp and Machu Picchu. A big change - but as he says at least has memories and is glad he got the opportunity to do these things. ๐Ÿ’๐Ÿ’๐Ÿ’

  • one of the things about ataxia is you never know what each day brings.I have problems with my joints and have a knee replacement . low chairs are a no-no unless you there is a rail or someone to help you. keep active and go to exercise classes to improve your general fitness especially in your knees and back and everything else. I go to 2 exercise classes a week- one mainstream for everyone and one for people with disabilities- these help. also try to avoid putting on weight - I am the same weight I was 3 years ago but it is hard to avoid eating too much and not doing anything. I have to use a wheelchair when I go out and have been issued with a motorised wheelchair but at the moment I cannot go out on my own as I need to pass a test - have been told to practise every day but when you live alone it is hard to find people who can come with you - everyone is busy with their own families but now the weather is hopefully getting better perhaps I can programme in more practice !keep smiling- you just have to accept ataxia and find new ways to do things it is hard but life is still worth living !!all the best Sylviaxx

  • Hi Jill. I have EXACTLY the same problems. And, I too, have a 'mild' form of ataxia (for now anyway). Another particular problem is descending steps/stairs, but there is usually some kind of handrail, so it's not impossible, and for those rare times that a handrail is not available, my trusty walking stick becomes invaluable.

    So I try to avoid situations where I will have to do either.

    Do you use a stick/walking aid occasionally?

    Best move I ever made (even before I really needed it on a daily basis).

    Iain :)

  • Thanks for your replies. It's interesting and perhaps reassuring to be able to attribute the problem with getting up from the floor, to my ataxia, if that doesn't sound daft. Iain, yes, it it 'mild' at the moment but I must admit that I'm finding some things difficult. We had our garden landscaped a couple of years ago at quite a large cost, as we love the garden and back onto fields. As it slopes downwards we had three steps built into the patio to take us down to the lower level of the garden . They are wide steps, as in, I imagine it's easy to stand with both feet on one tread, but as there is no handrail, I just stand at the top of them and dither...three steps!!! I feel a sense of helplessness. We used to enjoy walks in the countryside, and I was thinking of joining a local group, but really don't feel I can because if we go over rough ground or encounter just a few simple steps, then I will not be able to cope with them...sorry, feeling as if at the moment, I'm doing a list of things I can't do, rather than thinking about those that are still okay for me. I know it's mild, but it's worrying too.

  • Steps, even just stepping off of a 5-inch kerb, with nothing to hold onto is a real problem for me. And, yes, it brings a feeling of "helplessness". Of "isolation".

    Which is why carrying my stick, even when I don't actually need it (although I need it more now) is such a great thing. It is so liberating. And makes otherwise impossible tasks, very possible. Which has HUGE psychological benefits.

  • Hi Jill

    My mum and auntie both have SCA 2 , my 42 year old brother is waiting for test results. I'm not going to find out just yet as my mum is pretty bad and needs my full positive focus.

    As a family we laugh about things. My mum is nuts she swears and calls herself a " spaz" ( her words sorry if I offended anyone)

    My brother has been going through the " I'm sure I've got it, my balance is off, bla bla so he's decided to find out.

    I'm going through a similar experience to you, I'm feeling like I can't walk down steps without the hand rail. I feel once I am low on the ground, like polishing the fire etc I can't hardly get up. It's so scary and I feel worried. I don't know weather to just find out but I look after my mum so much.

    Keep positive. It's such a strange illness . We don't have any support as a family and just use our silly sense of humour ๐Ÿ˜‚๐Ÿ˜‚


  • I think I will have to relent and have a stick. To be honest, I suppose I've been a bit in denial. When I take my 83 year old mother out and link her arm, people probably think it's ME giving her the support!!! So, I've managed to sort of 'hide' things a little bit. I do have a stick that we used to use when hill walking, so I will dig that out and try it. Thanks for getting back to me so quickly Iain.

  • Dear Jill,

    Use your arms! Bathtub? Crawling is ok if u tohave to. Just this weekend I was in a hotel and the 2-3 steps to the pool were bannisterless. My husband came to "help". He refused to help in the coventional sense. You can do this, he yelled, I will catch you if you fall. Of course, I fell. hate when people try to act like PT's or dr's. L,N

  • Neta, you need to impress upon your husband that sometimes you need physical support - not the cheerleader variety ! You were going to get your exercise in the pool, you have no need to prove anything or take unnecessary risks on the way in/out of your safe exercise space. x

  • Thanks for your supportive words "Angelite". My husband is not the biggest help around. I guess you could say he's in deep denial. We barely talk anymore. I blame it all on CA and his personality. Ironically he's a professor of ethics! I guess he knows alot but knowledge hasnt "taught" him much. I find "moral giants" in the most unlikely places.

  • hi!

    I thik you would have to work in the upper knee muscles.

    i also have or had problems with lower chair and my therapyst sad that I need to work my upper knee muscle becouse it "carries" our leg to go in 3D and he makes easyer standing up from a chair... and also is important to sit whit gravity forwords and not in the middle or not to lean our back in chair...

  • Dear Jill, I have Sporadic Cerebellar Ataxia (minor symptoms starting at about 43 years, actual diagnosis at 49 years-62 years young now), idiopathic, unknown cause right now, although waiting for results of genetic "exome" testing, symptoms 24/7). Anyway, I DO have trouble getting up from a chair or the floor! I'm very stiff and feel quite weak when I first stand up, especially after sitting in a chair in a restaurant. I literally pull myself up and have to stand in one place for a minute to get my barings before I start to walk (I do use a cane to prevent falls). Currently, I'm having lots of trouble (stiffness/pain) in both knees (I fell and tore my meniscus in my right knee a year ago and have severe arthritis/bone on bone/ missing catiledge in my left knee, which I tore and had removed years ago). I need a total knee replacement in my left and endoscopic surgery or maybe (?) total knee replacement in the right as well. I must have a banister to transcend stairs (up or down) and use my cane stepping off a curb or walking on uneven ground. My neurologist says the reason why getting up from a chair is so difficult for someone with ataxia is because it takes longer for the signals to go from the brain to the muscles and the stiffness ataxia sometimes causes, as well as incoordination doesn't help the situation either. Oh well, one of the "joys" of having ataxia...,ha! My best to you...,;o)

  • Thanks for your reply February. To be honest, just to know that my symptoms are due to Ataxia makes me slightly more accepting of them somehow. So many of the things you said make sense to me. For a while, probably a year or so now, (was diagnosed in March), I have felt I have to really push myself up from chairs in restaurants and sort of steady myself before walking off. We went to a restaurant for my 50th birthday in January, a lovely old pub, but it had tiled floors. I had worn 'court shoes, but only with a 2in heel or something, and I really had to concentrate to take myself to the ladies! Not so long ago it wouldn't have been a problem. There just seems to be so many and varied symptoms, I'm not sure what's related to Ataxia and what's not...thanks again for your reply.

  • I am exactly the same but find getting up from the floor easier earlier in the morning before I am too tired.Always have a chair handy is my advice. Good luck!

  • Hi Jill,

    This does sound like it may be a muscle weakness problem. Perhaps a referral to physio could help to pinpoint which muscles are weakened and some tailored exercises given to help strengthen what function you have ?

    I too can't get up from chairs but can mostly get up from the ground using hands, if not too stiff/tired. My prob is slightly different - rather than weakness I have spasticity and co contraction, so instead of sending signals to just the muscles I need for standing up, I switch on all the opposing muscles in my legs ( agonists and antagonists ) which means they fight each other causing a stalemate or lock up ! I get round this by dropping the signals to legs, pushing up from chair arms with my arms, then reapplying signals to legs when almost upright. Pushing on a stick and launching forwards for momentum is useful in chairs with no arms ! ( I should mention I am suspected MS - ataxia is a part of my symptoms )

    You sound like you are having to work very hard at keeping your balance and are limiting your activities as a result. I know it is hard to accept that you may need a little help - I was devastated that I needed to rely on my stick again relapse,after getting stick free again for 2 1/2 years following my first neurological attack. In spite of my love/hate relationship with this 'tool', I have come to the realisation that it lessons the workload on my spastic muscles, stops me veering off to the right, helps me keep my walking rythm better, allows me to walk further, for longer, on whatever surface I like, safely and 'normalises' my gait more, useful in public ! I am able to toddle about a bit at home without it, so get my 'independent' practice in, but use it when going out - the best of both worlds : )

    I am thinking you probably spend more time looking at the floor, concentrating on balance and assessing the safety of the surface if uneven etc , rather than being able to look around you and enjoy the scenery ? I'll bet your head gets tired with the effort of concentration too. A simple stick could give you the support you need, more confidence and free your head up more to enjoy your surroundings. Mine is a lightweight, folding metal type, plain black ( you can get all kinds of fancy patterns on them these days ! ) but blinged up with assorted keyrings, according to the season ! I had festive dangly things on it at Christmas : ) I decided that as it had become a part of my life, I might as well make friends with it and personalise it : ))

    Do try a 'stick friend' - it will open up your world : )

    Take care,

    Angela x

  • Thanks so much Angela๐Ÿ˜Š

  • theres me thinking i was just a clown and was alone in the crawling to get up in stages thingy. i was on the floor with 5 month grandson had to get onto sofa so i picked him up, nope couldnt stand so i plonked him on thesofa, crawled to the closeby stairs got upright to sort him out.. I cant wait till he is crawling and reaching up to granny so as it is easier for me to love him more.

    As for low sofa, thought it was cos i was too fat to move lol. now realising this will get me a handrail fitted closer for me to get up. xxx I do love the comfiest of chairs tho lol. thanks for this info. at least i understand why now. xx

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