Hi

[Andyfriedo]

My family has a history of SCA6 late onset Ataxia. Am 51 and no obvious symptoms yet. Am keen to prepare and help others in early stages. Have seen it affect family members in differing ways. All with dignity thankfully. Get in touch if you want a chat.

[gossy]

hi my nane is Linda I suffer from sca6 Its also effects family on my Dads side I was 49 when I was diagnoised ,though most of my Dads siblings were older when they were diagnoised apart from one sister who was in her 40s if you want to chat anytime spend lots of time on pc

[Trinity48]

I am now 80years old and have had SCA 6 for 17 years with family members

also being diagnosed in their early 60s,my maternal grandfather,my mother, her sister,a male cousin How does one cope having witnessed the deterioration in close members of one's family?I'm trying to keep active as possible but it is becoming more difficult to manage everyday tasks.It's encouraging to hear from other SCA 6ers.Best wishes to you all,

[nigelrheath]

My consultant told me if you are going to get SCA the type to choose is 6. Late onset and slow deterioration.

Provided of course you pay attention to the normal aging process. Any condition has the tendency to mask natural deterioration and because we pay attention to the condition it’s effects can become more noticeable.

As we age we need to do more exercise and be more creative in how we do this. For example running is highly dangerous for me as it leads to a fall very quickly. I would like to cycle but live in a town so can’t do it every day.

Swimming is also good but not a favourite of mine. So,I do 20~30 minutes yoga stretching every morning before breakfast, followed by 5 minutes of HIIT. High intensity interval training. Plus I go for a walk every day. This is strengthening my body.

I have put together a website with some resources I hope are helpful for those with sca. Https://ataxiafightback.wordpress.com

I realise from recent tv programmes on the body and how to stay young that most of us find ourselves overweight or unfit without being sure how we got there and with not much clue how to reverse things. My hope is that the site gives some how tos and some moral support.

Good luck

Nigel

[sunvox]

Andy, Were you tested for the faulty gene? Have you been following any of my post?

Joe

[SharonPS]

Have you been tested? You may not have it. My mum, an aunt and a cousin had/have it but no one else.

[lola261184 in reply to SharonPS]

Hi sharonps have u been tested

[SharonPS in reply to lola261184]

Yes I had the test when I started to get symptoms. It's just a blood test; nothing to worry about in itself just be prepared for the result.