Looking forward

My 99yr old mum has had ataxia symptoms probably as far back as I can remember. We never put a name to it. She didn't want to know.

We found out that some of her siblings had similar issues and did want to know. That's when we first heard of ataxia.

Over the years mum has deteriorated. She's 99. What can we expect?

More recently though I've started to think am I carrying the gene? We go through life just expecting that things will continue in their own sweet way BUT.

I'd like to know if anyone has any ideas about things that could be done to be in a better place to fight it, or at least have more strength to fight it for longer.

I've realised perhaps at the right time that although I may have a long life I may have to make the most of now rather than waiting until "next year".

2 Replies

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  • Hi Paula :-)

    For a long time I was convinced my symptoms echoed some condition my mother had coped with. She'd had various problems but had never been tested for Ataxia.

    Now, I know that I have the gene for a ressessive Ataxia, and this seems to rule out the likelihood of my mother actually having the condition herself.

    It appears that I inherited a faulty gene from my father, and a faulty gene from my mother. They themselves were only carriers, but any children from this union had a 1 in 4 chance of going on to have Cerebellar Ataxia, I have one brother and he is ok.

    I have had worrisome symptoms as far back as 1990. But, it was only when I started having falls that my GP finally took action. He sent me to a Falls & Syncopy clinic, telling me it was for the elderly but that he couldn't think of anywhere else to turn to.

    After tests were done there, I had an MRI. Cerebellar Atrophy was evident and I was diagnosed with Idiopathic (unknown cause) Cerebellar Ataxia. That was in 2011, and I donated DNA.

    I wish I'd known about this genetic condition before my mother died. My father died in 1978.

    If you have concerns yourself, it might give you peace of mind to ask your GP to refer you to a Neurologist.

    Most of us with Ataxia experience similar symptoms, to a greater or lesser degree. Because the condition is rare, it's difficult even for medical experts to predict an exact course. Even within the same family symptoms have been known to differ, some members could be totally unaffected.

    It is challenging, and symptoms can be erratic, seemingly lessening off or increasing for no particular reason.

    Both AtaxiaUK, and the National Ataxia Foundation are good sources of useful information.

    Best wishes :-) xB

  • Hi Paula,

    Whether or not you go on to develop ataxia symptoms, the fact that you are now considering that possibility, and how best to cope with it, is great to hear.

    I was diagnosed with ataxia quite recently, but tests have been going on for the last couple of years. Right from the start I was given some very good information when it came to dealing with any future issues - to try and stay as physically fit as possible - especially when it came to leg muscle strength. Use it or lose it.

    Just 3 years ago I was quite fit. Every day I would either run, swim in the sea (I lived on Mallorca at the time) or go trekking in the mountains. Today though, it is a real struggle just to go anywhere. But I do. My ataxia means that I have problems starting/stopping or turning quickly. But once moving on fairly level ground, I can walk for miles. I realise that this will not always be the case, so while I can, I walk EVERY day.

    This keeps my general fitness level as high as possible at the moment, so I'll be in a better position to deal with future deterioration.

    So my advice is to walk. Walk. And walk some more. Maintaining your general fitness now, will help you deal with any degeneration in the future.

    Stay well,

    Iain

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