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Thread: spino cerebral ataxia

  1. #1

    spino cerebral ataxia

    hi friends,
    i have just joined this forum in search for a cure from my illness, i am suffering frm ataxia from last 4 yrs , even my younger sister is suffering from this illness from 8 yrs. if anyone can help regaring this plz let me know.
    i am from india, does anyone know what are the options available here in my country, is anyone suffering from the same illness as i du, plz be in touch with me.
    waiting for u r reply.

    regards ,

    VISHAL.

  2. #2

    Smile spino cerebral ataxia

    My sister 46 yrs old living with spino cerebral ataxia for 3 year. Now she could hardly manage to walk at her home at Silchar, Cachar. Need 24/7 support, my brother-in-law is now in a poor condition. They went Vellor for treatment 2 yrs back. No any better condition, day by day in worst. Plz any one who could suggest the best medicine. Or, any hospital. Plz help.
    - Doren
    longjamdoren@yahoo.co.in

  3. #3
    Senior Member Katilea's Avatar
    Join Date
    Mar 2009
    Location
    Yorkshire, UK
    Posts
    385
    Hi

    I have a rare form of Ataxia caused my thyroid going wrong. I was left with ataxia then it started progressing even after they had got my thyroid levels right again.

    I have had it 7 years. I now used wheelchair have electric one for outdoors as im in village with loads of hills and a dog to walk twice a day!

    Round house I can manage with manual chair and also walker with seat on. My ataxia affects my balance and co-ordination for walking, my bladder and fine motor co-ordination using hands (writing, typing, mouse etc) My speech is also affected and I have a Lightwriter communication aid for people who cant understand my voice or signs. I use sign language with family and friends as I was deaf before the ataxia started in my 30's (I went deaf at 16 also caused by thyroid related problems).

    It's nice to find someone else with Ataxia on here, I am in Yorkshire, UK.

    Kati

  4. #4

    Response for Kati

    Are there any support groups in UK?

    Quote Originally Posted by Katilea View Post
    Hi

    I have a rare form of Ataxia caused my thyroid going wrong. I was left with ataxia then it started progressing even after they had got my thyroid levels right again.

    I have had it 7 years. I now used wheelchair have electric one for outdoors as im in village with loads of hills and a dog to walk twice a day!

    Round house I can manage with manual chair and also walker with seat on. My ataxia affects my balance and co-ordination for walking, my bladder and fine motor co-ordination using hands (writing, typing, mouse etc) My speech is also affected and I have a Lightwriter communication aid for people who cant understand my voice or signs. I use sign language with family and friends as I was deaf before the ataxia started in my 30's (I went deaf at 16 also caused by thyroid related problems).

    It's nice to find someone else with Ataxia on here, I am in Yorkshire, UK.

    Kati

  5. #5
    Senior Member Katilea's Avatar
    Join Date
    Mar 2009
    Location
    Yorkshire, UK
    Posts
    385

    Smile

    There is Ataxia UK. They have local support groups in most big city's. The nearest one to me is in a big city over 20 mile from me as i live in a small village and have no car.

    I mainly get my support online by chatting to people everyday on ataxia groups that I am also a member of.

    Did you join the Ataxia South Africa group yet? I told the manager to watch out for your application. We will be chatting sunday night (maybe afternoon where you are) if you want to join us?

  6. #6

    ataxia in UK

    Katilea, I would love to join the support group in UK - do you have a computer address? Thanks - Fayebo

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