Episodic Ataxia

Over a year ago my dad was diagnosed with episodic ataxia. He lives on his own and has countless falls which have resulted in many bad injuries and now has a wheelchair for when he has an attack and is unable to walk. My 2 sisters and I have been trying to help as much as we can but the doctors said that it was such a rare condition and we don't know anyone else who had suffered from it. Does anyone else here suffer from episodic ataxia and could share their experience with us? We are still very much in the dark about the condition and just take each day as it comes. Thank you.

2 Replies

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  • Hi Kathryne😊

    Contact AtaxiaUK and they'll send you an information pack, including some to pass onto your GP. Their website has a list of Ataxia Support Groups throughout the UK, hopefully there'll be one handy for your Dad, you might like to go with him. Almost always it comes as something of a revelation to speak to someone else who totally understands. If not, he can always ring his nearest, and chat on the phone😊

    The National Ataxia Foundation has a lot of useful information too.

    Generally speaking, whichever Ataxia is diagnosed, the symptoms are pretty much the same, to a greater or lessor degree. It is challenging, and it can be difficult to predict the exact progression, even for a Neurologist.

    It's important to remember to try and keep stress levels as low as possible, stress and being overtired can make it harder to cope with symptoms. It's all too easy for stiffness to set in, which makes balance worse and results in falls. So exercise within caperbility is usually advised, basically if you can move, do it😏

    There are medications and treatments to help alleviate symptoms. Neurophysiotherapists are often a great help.

    Best wishes to your Dad 😊xB

  • Thank you for replying! He has regular appointments with his consultant at hospital and she is trying different combinations of medication to find something that helps the most. I will definately look into those support groups. The whole time he's had this illness we haven't known anybody that has it so it is nice to find organisations and information about it and other people who also suffer from this horrible condition. Thanks again for your reply!

    Kathryn

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