Cerebellum ataxia support groups?

Hi I am the partner of a cerebellum ataxia sufferer, does anyone know of any local support groups? My partner really needs to talk to other sufferers, he's been diagnosed approx 4 years and is suffering like a grief, grieving for the person he used to be that has now gone. He really needs to talk with fellow Sufferrs.

Thankyou we're in Noerhamptonshire.

Jules

8 Replies

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  • Hi Jules

    Thanks for your post. The best thing to do would be to contact the helpline at Ataxia UK who hold an up-to-date list of the Branches and Support Groups in the UK. The number is 0845 644 0606 and it is open Mon-Thurs 10.30am-2.30pm.

    If your partner is not already a Friend of Ataxia UK I would very much encourage him to become one. Ataxia UK is free to join and amongst the benefits is receiving a quarterly magazine which is very informative and helpful. You could discuss this more when phoning the helpline.

    Best wishes

    Harriet

  • Hi Jules

    I am I Northampton. There does not appear to be a local group, but I am trying meetings of Different Strokes. Fight on!

  • Hi Nettles how do you cope, have you been diagnosed long? Do you find talking helps? I feel my partner is grieving for the person he was, he hasn't talked to anyone else with the condition.

  • Hi Jules

    I live in Rugby, which is close to the Northamptonshire border so if you're on this side of the county, there is a Support Group in Coventry which I go to when I can. (I no longer drive so have to rely on others). We are a small group of people with a variety of Ataxias and it is very friendly. We meet in a small community centre in Exhall Green on a Sunday afternoon, approx every two months or so. Our contact is Katie Henderson and her email address is ohbotherx@icloud.com.

    I hope this is helpful

    Lorrainewalls

  • Thankyou Lorraine I will tell my partner see how he feels about it

  • Hi Jules.

    I have SCA6 and have been diagnosed for 3 years. I myself feel like I'm grieving so I know how he feels. I live in Kent but there aren't any support groups close to me so I hope that you are able to access one near you. I also belong to a forum called Bens friends which is just for people and their families that have rare illnesses including Ataxia. Like Ataxia U.K, there's so many wonderful people on there to chat to, lots of advice and support and I've made lots of friends from all over the world.

    It's a very personal processes and we all take time in accepting what we are going through. I myself now suffer with depression due to having Ataxia. I've recently lost my job as my illness caused lots of time off which has devastated me because although my body isn't willing, my mind is as active as it always was, social life is difficult, I have three boys who have seen me at my worst and my beloved husband is now my carer and all of our plans have changed. It's an awful disease and you both need support and time to grieve but you don't have to go through it alone. There's so many likeminded people that you can reach out to you just have to ask.

    Lots of luck. Be strong. Xx

  • Awww Thankyou. Do you mind if I keep in touch with you? How is your husband coping?

  • Hi there.

    Do you have the date of the next meeting please? X

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