Ataxia Support in Preston (and hello from a new member!)

arraneleanor
arraneleanor Community member Posts: 1 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi all!

My name's Arran - I'm 23 and I found out that I have the SCA6 gene in December (it runs in my family), and I decided that between now and when my symptoms start, I should start to really live my life. So... I quit my job and started my own marketing agency. You only live once, right?

As of last month, I now also run the Ataxia support group in Preston. We meet on the last Thursday of every month, and I've invited physiotherapists, pilates instructors, speech therapists and a wonderful woman who creates personalised walking sticks and crutches so that people with disabilities can still express themselves. It's a great opportunity to meet other people who know what you're going through, and we've found that everyone really appreciates not having to explain their symptoms to one another! You don't have to live in Preston to meet us - we've got members from as far away as Skipton, so please get in touch if you'd like to get involved :)

I've watched my father's symptoms progress for the past five years, so it's been tough to imagine that I'll be going through the same thing soon. Because ataxia is so rare, we didn't consider that there would be people close to home who are just the same, but since starting the group it's been amazing to find new friends right on our doorstep  <3

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,605 Championing
    Hi @arraneleanor welcome to the community! 

    Thank you so much for sharing this! We have a few members with a diagnosis of Ataxia so I am sure they will be interested in hearing about your group.

    @fredfinch @howardcoleman @sudilan @Tiger17 @GeoffBosworth195661
    take a look at this :)
  • foxuk
    foxuk Community member Posts: 103 Empowering
    My dad had Freidreich's Attaxia and was told, as a young man, that he would be dead before he got to forty.
    Dad eventually died (with Freidreich's Attaxia as a cause of death) a few days after his Eighty Fourth birthday. 
    Doctors don't know everything and not everyone follows the normal disease progression. 
    I don't know if I have FA as I am a bit old to have been tested, but at 63 I am disabled from entirely different causes.
    Jon

    P.S. Dad was so disgusted with 'damn doctors' that he refused to see one for the last twenty years of his life. He loved telling the story of my mum being phoned by the GP's surgery and being asked by a very embarrassed receptionist - 'Mrs S... , Is your husband still alive we haven't seen him for ten years.' He had a great sense of humour!

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