Hi, my name is SANDRA65! asking for any tips/advice about ataxia

SANDRA65

hello,just asking for any tips/advice about ataxia  always had it but did nt know much about it till i was about 38, thanks

Albus_Scope

Hi @SANDRA65 and welcome to the community.

Ataxia isn't something I know much about, so I'm just going to move your post to another category, so more people in the know will be able to see it and hopefully offer you a tonne of support. I hope that's ok?

If you wanted to take your mind off things, have a chat, or play some games, I recommend our Coffee Lounge and Games room. 

UKNightWatch

Hi! I'm a guy, just turned 55, and I have been aware of my ataxia for about 15 years now. I also have Fibromyalgia. It seems I'm doubly blessed!

My ataxia is largely undiagnosed. This does not mean it does not exist! It's more on the lines of the tests I have been through [many] have not shown an exact cause. I do have gait ataxia, which severely affects my balance and coordination. The word 'ataxia' breaks down to 'a' = 'without' and 'taxia' [or 'taxis'] = 'coordination'. Scans around about 15 years ago indicated that there are some anomalies in my brain that may be TIAs - A transient ischaemic attack (TIA) or "mini stroke". This lines up to why I was being seen by doctors in the first place, as I was experiencing unexplained falls / loss of consciousness! My doctors have told me that, like my father, I likely have cerebellar ataxia, though they still have me 'under observation'.

I could go on about ataxia and how it has changed so many things in my life! For now, though, I just want to share some things;

1; Know that you are not alone - there are many resources only where people will offer support and advice

2; Talk to everyone who'll listen - your family and friends may react better if they know that you are having problems and the medical community including your GP / doctor and others [neurological team maybe] can be a great help

3; Do not be disheartened if doctors etc. say things like 'there is no magic cure' or 'there is little to do to help' - they will help as much as they can

4; Try to stay positive as negativity is not good for us

5; Adapt as best you can! Ataxia is not usually life-threatening, but can very much be life changing. Without being silly about it - do as best you can

Sincerest kind regards.