Hi just wondering those of you with sca 6 how long you being able to walk without assistance x
It doesn’t matter what type you have there is no natural progression.
I look at it this way…This disease can be hereditary or idiopathic, give you whatever symptoms within that type that it wants and progresses at whatever rate it wants and that is no cure. Exercise does seem to help.
I know im just really unsurei have a little boy who i worry about and would love to have another bbaby.
I believe sca 6 to be late onset and slowly progressive. From speaking to a few people symptoms come on gradually. My partners family developed symptoms in their 60s hoping this to be the same for my partner. I hate uncertainty and this has turned our world upside down x
HI, guys I also have FA and I just want to say that I ordered this pink fold up powerchair that folds into the car boot with ease. it’s worth checking it out! Mobility Buy MobilityBuy.com
Everyone is different. From when I first had symptoms to wheelchair - 12/13 yrs
From being diagnosed 5 yrs. It depends on the serverety of your case. You need to have a good talk with your Nuro but as Kay2 said. It will do what it wan5s. Being uncertain is now part of your life.
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Hi have you got a family history of sca 6 x
I was in my mid 20’s when I first started getting Headaches .Dizzynes [similar to seasickness] and Vomiting. By my 40’s I thought this is life as 15 odd Doctors and a Nuro told me it was all in my head.In 1992 [40] I went to another Nuro who told me to take 2 disprin and see him in 6 months.I got 2nd opinion. Blood test told I have SCA6 and it was hereditary but I was only one to get it. Today I am in wheelchair getting a sore backside but bussier and happier than when working . There were some bad days at fist and still one here and there
So did the generation before you not have it . Would you say it progresses slowly. Everyone keeps saying to me sca 6 is better one to have if you have to have any .
Through DNA carries have been traced
At the time of my diagnosis 2011, the Neurologist said ‘if you have to have ataxia, SCA6 is the one to have because it’s best understood’.
Typically, if the condition does occur, symptoms usually begin to be troublesome around middle age. It’s almost impossible to predict exactly when it will start, or an exact rate of progression, in fact even within the same family group symptoms may not be exactly the same.
To completely rule out any possibility of passing on the ataxia gene, predictive testing is probably the way to go. Similar to IVF selection, probably just as expensive and usually undertaken after receiving advice from a Geneticist xB
To Lola1984
You may experience no difference in the way you feel and your current ability to perform. This could last Days,Months or a Year or 2, Suddenly it sneaks up on you and you enter a new phase of life. You will handle it better if you have a good support team. perhaps the most important person to have is a Partner who understands and helps you in your 'Bad moments. These, unfortunately, from time to time do exsit. Above all throw yourself into something you enjoy and when a change comes you’ll find a way to work around it.
Thanks Ian. It’s my partner who has gene. His mam and nana also have it but got it in 60s
We have a little boy I’m just a worrier starting to try and get my head around it x
Lota changes are 50% How old is he?
My partner is 32 no symptoms and my little boy is 3 x