Ive just been told I have some sort of ataxia got to go to Sheffield to find out what sort my wife has stopped me riding my motorbike I feel lost I love my bike, she has also stopped me fishing by myself because I fell in the lake does ataxia get any better thanks sorry if
this sounds stupid
Hi🙂 Until you find out exactly 'what's what' put safety (and give your wife peace of mind) first. She has your best interests at heart🙂
Being given a diagnosis of ataxia, can initially feel almost like being banned from every pleasure you've ever enjoyed😏 Of course with ataxia being so variable not everyone has the same limitations. But, it can be hard to see any 'bright side'😏
Years ago, many years ago, I was thrown off a scooter (1960s). It wasn't the drivers fault, I can see why your wife is being cautious. My garden has an outdoor swimming pool ( previous owners), I'm terrified in case I slip and fall in (my husband worries if I'm in the garden alone).
🙂Most of us will have felt similar to you at one time or another. 🙂xBeryl
Hi Beryl, when's your garden swimming pool party ???
😆
Hi Cookie 66
I can sympathise with you, but being the wife of someone with Ataxia myself, I can see where your wife is coming from. My husband too likes trout fishing, just recently he got his PA to take him to carsington waters on a specially adapted boat, he didn't catch anything but he had a good time, despite ending up in hospital that night.
I found that my husband thought he could do everything despite getting into danger, he just didn't see it, which is good in one way as he is always willing to try things. He is stubborn though and he's about 14 years down the line of being an 'Ataxian', is a full time wheelchair user. He's just stared back at the gym, through the health referral and has been a few times to the Rotherham shooting club.
If you're anywhere near the Chesterfield area send me a private message and we could discuss things in more detail.
Do you still work?
Good luck with your appointment at Sheffield.
Sheffield do have a support group/ branch if your in that area.
Hi. Most ataxia's are progressive and you need to have a diagnosis to help you know anymore. Ataxia uk are very helpful with information. Hope you get the information you need.
I am also waiting for appointment at Sheffield since April my ataxia has got worse
Hi, first off it doesn't sound stupid ! I think the only thing I'd add to what others have said is it might be good not to expect to find out straight away what type of ataxia is affecting you. 10 years down the line after diagnosis - and many, many scans and blood tests etc my friend still doesn't know. Yet we still keep up visits to Sheffield and she finds these helpful. Largely it's because people there understand and also cos she believes she's in the best place to maybe one day get to know exactly what ataxia she has so that she'll then be best placed if they're then able to find something to improve/ cure it - a long shot but then it is a shot!
In the mean time Ataxia UK very helpful, walking with Ataxia website very helpful, internet for any and all info about Ataxia helpful. Sheffield arranged a package of support that included Cognitive Behaviour Therapy that she really didn't want to go to but ultimately found incredibly helpful in dealing with her diagnosis and its implications. Her approach is to keep as fit as possible, to keep fighting so that if any cure does come along she's in best place to benefit. Also so that she has control of herself not this damned Ataxia.
It's also hard for loved ones to deal with, trying to do the best and often feeling you're doing the opposite not helped by the ways that Ataxia can make communication more difficult. Keep talking! Keep sharing!
All the best xx
Welcome and it is very early days. Tips great though so hope help a bit and we have all been there so do not worry.
Good luck at Sheffield (but I am not sure if helps that much knowing the sort? If they find out is the sort and it is inherited and they offer testing that is so hard. Purely from what my family experience).
It it is a hard thing to learn but for our families we must adapt and try to keep safe.
I hated stopping driving but I have got used to it.(Like swimming is so scary now but I love it so I (look silly) but I have an inflatable collar and dongles and I am safe with company). Try to adapt stuff and find someone to be with you. That is hard!! Also try to find a new hobby that you enjoy but is safer.
You must try to stay safe but fit. I had a fall months ago but it really knocked my confidence and took AGES to recover. I was badly bruised but luckily did not break anything. So stay safe.
Talking helps some a lot. My husband and my daughter had great help. My son does it online but I am not a talker, I find this helps me. We are all so different and our whole family is affected by ataxia but you must try not to let it take over all the time.
Good luck x
Hi I too was a keen biker but as im sure you know when riding we use our body's in tune with the machine to stear so my bike was the 1st thing to go I found slow manoeuvres the hardest and stopping and putting on the stand it's not worth it to you or other people it's sad but your biking days are behind you as ataxia very rarely gets better im sorry Guy
Advise Please
new to ataxia 
Ataxia / menopause 
Is seeing a Neurologist on a regular basis essential?
