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Ataxia Support Network

Hi, it's taken me a few months, my name is Craig


#1

I was diagnosed as having Inherited SCA3 in July. Something I had suspected I had inherited from my late father. Turns out to be 50/50. I got the wrong 50. So far symptoms are balance, having to ‘think’ about walking, recent slurred speach and writing

I gave up work last week knowing my problems, issues were becoming more aparent!

Not sure what the next few months hold, but would be happy to help if I can, would like to help anyone / any group if i can.

At the moment the elephant in the room family wise is Ataxia. If you don’t have it you don’t understand it!

Unfortunately the only marker I have is my late father - which is not a great marker. Been told we are all different, which again is not a help.

I am UK based.

Craig

Take care my friend.


#2

Hi Craig. Welcome to the board. I inherited SCA 6 from my late father. I was diagnosed at 60, although the symptoms started when I was in the 50’s. There are some research going on to slow the progression. Especially Biohaven (USA) and intraBio (UK) have FDA approval to go ahead with the research. Until I see a breakthrough with genetic engineering, I don’t see any reversal attempt. There are some devices like tDCS (Transcutaneous Direct Current Stimulation) research are ongoing. Some 40% of hereditary ataxia have Gluten intolerance. Something to keep in mind. So far, daily exercise is the only thing that keeps you going. Keep your eyes and ears wide open for new research. https://ataxia.org/wp-content/uploads/2017/07/NAF-Web-Content-Publication-SCA3.pdf


#3

Hi Craig, welcome :slightly_smiling_face: If you didn’t already know, there are details on www.ataxia.org.uk for the East of Scotland Ataxia Support Group. Being in Edinburgh, that may be your nearest, I live near Newcastle :slightly_smiling_face: My type is Recessive Episodic Ataxia, and my Brother got the lucky 50%. You are so right, you need to experience it to know what it feels like, and exactly how much it impacts on daily life. Merry Christmas, and best wishes for a Happy New Year (Hogmanay) :blush:xB


#4

Hi Shoaib,

Thanks for the welcome message and the info therein.

I will certainly consider the Gluten advice.

Kind Regards

Craig


#5

Hi Beryl,

Thanks for the welcome message. And thanks re Ataxia UK, I recently became a ‘friend’. It was my sister that got the lucky 50!

Hope you can enjoy the festive season.

Kind Regards

Craig