Introduction

Hi All, My name is Madeleine & I have had CA for 45 years. I'm now 73, & very practised in the art of falling over!! I have SCA 6. My brother, my nephew, & our daughter Penny also have SCA6. (Our son however, does not have CA). We are all at different stages with CA. I see my neurologist Dr. Giunti every year, & she is such an incredible encouragement. My brother can't see a neurologist any more as he's been very ill with cancer & is not strong enough. My nephew works full time & his sister also does not have CA but I think he sees someone. Penny lives in Melbourne & cannot afford to see a neurologist. (No NHS in Australia so please don't ever moan about our NHS. IT'S FREE) .

I cannot stress enough the importance of seeing a neurologist if possible, even if it's a long wait. He/she must specialise in ataxia.

Also doing exercises is very important too.

13 Replies

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  • Hi Madeleine, welcome😊

    As you say, we are very fortunate having the NHS🙂 If at all possible, it's vital to be properly diagnosed by an expert Neurologist🙂

    For several years after diagnosis I was able to keep active, enjoying gardening for hours on end🙂xB

  • Hello Madeleine,

    Thanks for your info. My hubby Peter has SCA6, he is 76. He was diagnosed with his Twin 5 Years ago. His Twin died last year (of cancer) it was very quick.

    Peter has declined rapidly. We see a Neurologist and my question is .: What exercises do you do? We go twice a week to a physio and he exercises at home.

    Any advice would be great We live in Brussels and there is no support here.

    Thanks

    Lola

  • I do exercises lying on my bed to strengthen my core body muscles. I also do exercises hanging on tightly to the bannister rail, to strengthen my legs. They may not heal but they can always do me good. Walking, even a little bit, is so good, & constantly lifts the spirits. Always concentrate on what he can do rather than what he can't do. My husband is good at motivating me to keep going, so you can also be your husband's motivator.

  • Thanks

  • Hello Lola

    Sorry to but in on your chat but I do find exercise especially walking good. When the weather is not so good I use an inside exercise bike, rowing machine and an excise trampoline with a handle. It is good because I can no longer bounce but I can hold on and bounce on the balls of my feet. I need to hang on but I use my Dad’s old wobble board sometimes. I go ballroom dancing with my husband for an hour most Saturdays too. It is early days but I am trying an annoying but VERY enthusiastic american fitness coach who runs Grow Young Fitness. Hope some of this helps : )

    I think the exercise trampoline with handle and course probably the best.

  • Thank you Litty. Peter is hardly mobile. He can just about walk 100 /200 meters with his roller. He can hold on to the bars bend his legs, and do his exercises. I wonder if an exercise bike would help?

    😄

  • I am very unfit at the moment (flu and on antibiotics all Christmas) and going on my bike can be a bit scary until I am settled. If he does not have one a recumbent looks much safer

    lifespanfitness.com/uk/fitn...

    In theory biking helps. My friend Kati is a great believer in enforced exercise and writes a blog on it

    katilea.wordpress.com/2012/...

    This is very inspiring too

    walkingwithataxia.com

  • Please get well soon. Thank you for the websites . Extremely helpful.

    Get well soon.

    Lola

  • Hi Lola,

    you can get a variety of pedal exercise machines that can be used from a chair. This will help with leg strength without risk of falling. They come in a variety of designs and pricess. If you put "chair exercise machines" into a web search you will find a variety to choses from. The other useful thing to download from Ataxia UK website is their "management of the ataxias towards best clinical practice" This is for professionals (Occupational therapists, physiotherapists, speech and language therapists, G.P.s etc) but give an evidence base to interventions/treatments that might help - and would help any health professionals you visit. Good luck!

  • Dear Madeliene, A HUGE welcome to this site. I live in the US, in the State of Michigan but freguent this site because I find it so helpful. I've had cerebellar ataxia for about 20 years (diagnosed 13 years ago, but had very minor symptoms starting about 8 years before diagnosis). I agree, exercise is so important! I Google (on my laptop) exercises for strength and balance and have even made up my own...,ha! It's so important to keep moving (safely, of course, as falling is not my idea of a good time...,lol!). My best to you..., ;o)

  • Hello Madeleine

    Our family has various stages of SCA1. We have quite a bit in common. I see Dr Giunti every year (for about 15years now), my sister who has it lives in Melbourne too. She is nearly 60 and is in a home over there. She was lucky and was able to take out medical insurance when she was back in the UK and used this for paying I think. Her and her friend set up a support group out there that your daughter might know.http://www.scars.org.au

  • I'll tell Penny. She lives in Greensborough, Melbourne

  • I

    Mea day ago

    Hi there,sorry to hear all about your family with SCA6.I have had SCA6 for17 yrs. with family members,maternal grandfather,mother,aunts all deceased now,and a male cousin,a year younger than me,I'm79.It would seem that our family's symptoms appear in our early 60s although of course the past members were not diagnosed with Ataxia but having done research into their 'conditions' it would appear inherited.So I was very interested that you have had it for 43yrs.I too have seen Dr.Guinti since1999 and have been keen to take part in any research projects.

    I seem to have deteriorated in the last year,as of course I knew I would, but I was very disappointed when my annual appointment for Sept.2016 was cancelled,and I now have one for July this year.I'm not coping too well at the moment,hate losing my independence,and find it frustrating trying to walk and cope with general living.Any advice would be very much appreciated.Best wishes to you.Trinity48.

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