cure? Might it be possible also to rebuild?

Hi,

My question is regarding a cure when they eventually find one.

Is there anyway it might be regressive (might well be the wrong word)? I mean the repair of damaged neural pathways or even a brand new rebuilding of them. Or is this not at all likely - I thought the stem cell research covered this, cells rebuilding the pathways from scratch. But it doesn't mention this when I look.

Is it 'pie in the sky' on my part?

A cure alone would be massively great of course for all those starting out on the Ataxia adventure - but I've had CA for 20+ years and wouldn't want to take a curing pill that just leaves me as I am.

Thanks. (ps and at the same time, do you think, will they produce a pill to get me back to my early twenties? A Benjamin Button med.) lol

8 Replies

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  • Hi Iplate

    Thank you for your question. You are right in thinking the damage done to nerves and muscles in people with ataxia is irreversible. When treatments and cures for ataxia are discovered the best outcome for people who already have symptoms of ataxia is their progression will either be slowed down or completely halted.

    I think we would all like something that would take us back to our twenties! The way research is going you never know!

    Best wishes

    Harriet

  • I am confused about your comment about muscle damage. As far as I know cerebellar ataxia is not a muscle-wasting condition like muscular dystrophy. Surely one of the reasons people with ataxia have weak muscles is because they become increasingly inactive and so stop using those muscles, particularly those in their legs. But in my limited experience if you work hard and do exercises to strengthen those muscles they get stronger, you begin to feel stronger and have more stamina when standing up. This has also been the experience of a Portuguese lady who posts on this website. She works from home and said that her legs became weak owing to the fact that she used to spend all day sitting down at her computer. But then she went to her doctor and insisted that she be referred to a physiotherapist for a programme of muscle-strengthening. According to this lady the results were a dramatic success and she now has greatly improved stamina when it comes to standing up and even moving around. Indeed she says that the physiotherapy has changed her life.

    There is a factsheet on physiotherapy on the website of the US National Ataxia Foundation (http://www.ataxia.org/pdf/Coordinative_Physiotherapy.pdf) and it says, "Research has shown that exercise and physical therapy

    can be effective in helping sustain mobility as the disease

    of ataxia progresses" and, " This program strengthens you in repeating

    the daily life oriented coordination exercises". If, as you seem to be suggesting, ataxians suffer from irreparable muscle damage, how does that fit with the above comments?

    By the way I am not trying to be argumentative. I know that you work for Ataxia UK and I admire the work you do but i am genuinely confused about your comment on muscle damage.

    Best wishes

    Jonathan

  • Hi Jonathan

    You are absolutely right that cerebellar ataxia (CA) is not a 'muscle wasting' condition. The person affected has difficulty co-ordinating their muscle movements rather than having a direct problem with their muscles.

    You are also absolutely correct that the muscle wasting seen in CA is due to inactivity of the muscles.

    The aim of physiotherapy and exercise is to optimise and maintain function (strength, flexibility and balance) for as long as possible. Exercise and physiotherapy can slow progression.

    If the muscles are left inactive for a long period of time other problems develop, for example contractures. As with many things, the longer these problems are left untreated, the harder they are to treat. These are not a symptoms of CA per se but rather possible consequences of muscle inactivity due to CA.

    I have an idiopathic cerebellar ataxia, diagnosed over 25 years ago. I had a course of physiotherapy a good few years ago but although I found it very helpful I was discharged after about 10 weeks. Unfortunately this is a very familiar story. I took it upon myself at the beginning of last year to start Pilates and I have done this 3/4 times per week, working on my general and core strength. Like the Portuguese lady said I would say this has changed my life! I can now pick something up from the floor without getting down on the floor or holding on to something nearby to steady myself. Sounds insignificant to most but it is huge to me!

    Exercise, physiotherapy and generally keeping moving is vital for people with ataxia. If you don't use it you lose it!

    Best wishes

    Harriet

  • I absolutely agree that exercise is the best thing you can do for yourself. I have had SCA6 for 9 years now and I can still walk 12 miles a day. I feel great . I do have balance issues don't get me wrong , but I would swear by the thinking positive and exercise regime.

    I would like to ask one question though , my memory is terrible now but it used to be really good . Is that because of Ataxia or am I just old at 52 ?

  • Hi ConantheLibrarian,

    I have just read your reply to Iplate and I feel the need to reply to you. You must be confused as he did not mention wasted or damaged muscles, in fact he did not mention muscles at all, instead he rightly mentioned neural pathways. The neural pathways are where the problems all start, not muscles. The muscles become weakened through lack of use, because when you have no balance, or very little, it is not always easy to exercise.

    Regards

    LadynTramp

  • Hi. I was answering Harriet's first reply when she says, 'You are right in thinking the damage done to nerves and muscles in people with ataxia is irreversible.'

  • I would be able to cope if I was able to go back just a few years,Ifelt I was able to manage then,this deterioration is so debilitating!

  • There are supplements, that can help repair the brain! For example, Lion's Mane, Pqq, Nac... maybe when the cure is found, and is starting to work, adding a few supplements would definitely help in recovery, in my opinion.

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