Hello

Hello I have just joined being recently diagnosed with SCA 17. First time I have really considered my mortality. Apart from my weird gait, occasional falls and loss of co-ordination, my symptoms are mild - I live alone, my daughter(11) stays with me weekly. I am having to reconsider how I live my life and where I go from here- I have been a traveller, performer and musician for many years and have no pension or savings. I have worked as a teacher of movement improvisation and can see how my theatre/movement skills can contribute to dealing with ataxia. Iam learning about this world slowly-I had a chat about mobility scooters yesterday for the first time. I find learning to live with this scary, but interesting part of me wants to forget about it and just carry on. Whatever, I am a novice at this- I've just joined the club! and left one that I never knew I was a member of -so called 'normal' people - you've got to live your life

12 Replies

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  • Hi jonijonjon well you are learning all about movement skills now eh. You are welcome to the special club, you will find people on here are very kind and knowledgeable. By the way I don't include myself in that I'm thick as #!#!

    If you have any questions someone will have an answer. It's scary but chin up all the best Derek

  • Hi! I have SCA2 and have had to adapt to a new reality. I'm only 44 yet I am now retired. I was one of the lucky few who really enjoyed their job and giving it up was hard but the decline in my mobility and reduction of my cognitive abilities meant that I was just not capable of that role anymore (it was a senior management position and very stressful). I now spend my days pottering about. My wife is self employed and I help her out where I can. Anyway, welcome to the group. If you have quests or need support, this is the place.

  • How did you find out/ realise that your cognitive powers were impaired ? Is there a test? Or I suppose a senior manager has to be cognisant of a lot to keep things running smoothly so maybe you just knew. I certainly don't! I ask cos in my situation of living independently and minuscule economic resources I rely a lot on my cognitive clarity . I appreciate your contact!

  • I was the assistant manager in a very high pressure control room and in addition to keeping things running slowly, I had lots of meetings with very senior people and had to be able to contribute fully. I found that my memory was abysmal, had trouble recalling things, my ability to type properly went as did my handwriting and when properly under pressure, my speech went slurry so communicating became difficult. To be fair, the organisation did everything they could to keep me on board including providing equipment etc. But I just knew that things were getting worse and that it was time to go. Luckily, my boss was superb and I had an excellent working relationship so it was fairly painless. I do miss working though!

  • Hi jonijonjon

    I was diagnosed 19 years ago with an unknown type of cerebellar ataxia. I have recently purchased a powered wheelchair and I just love it. I was an amateur musician, but ataxia put paid to that.

    All the best to you as you come to grips with this new way of life.

    Jay1972. I am still working but looking to take Permanent Health Insurance in a couple of months; I am a Finance Manger and also have problems communicating, writing (my handwriting is totally illegible), typing etc. Did you claim PHI, or early retirement on a pension?

  • Hi violasrbest,

    I got ill health early retirement. I had a local government pension scheme and upon being assessed as qualifying for ill health retirement, they paid my contributions as if I had retired at 65.

    Happy to provide further info if required. My advice is to claim PIP as early as you can (this can be paid even if you are working) as it helps if you need specialist equipment such as walker or wheelchair.

  • Many thanks.

  • No, I haven't claimed anything -i have made my work myself- have survived and travelled with work worldwide over past 30 years and , (with hindsight) unwisely not put anything away or had a pension scheme, so as far as I know I am not due anything. So am hoping to stay fit, eat well and not deteriorate to soon! Thanks - I will find out about PIP

  • Dear Jonijonjon, A HUGE welcome to this site! I reside in the USA (State of Michigan) and was diagnosed with Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7) thirteen years ago, although I had very minor symptoms starting about eight years before diagnosis. I admire your attitude! My best to you..., ;o)

  • When I was in college, I majored in theatre and music, and I took Dalcroze Eurythmics for four years. I use some of those exercises these days and it helps with my Ataxia and PD.

  • yes ,I find myself using any exercises in my daily workout from tai chi, dance, yoga, physical theatre that focus on balance, co-ordination and safety zones more and more crucial- it doesn't prevent effects of falling but it helps to minimize and manage

  • Welcome to this 'club'! We are here for each other. I have balance issues, couldn't walk a straight line if I had to, or ride a bike. By keeping my legs wide apart, when exercising, I am able to have better control of balance. Modifying some of my exercises helps, to accommodate my weaknesses. Aquatic exercise done at a therapy pool, where there are safety bars, has proven to be the best exercise for me. Best to you!

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