Hello
My Name is Paul & this is my 1st time with this post/. I have been diagnosed with Ataxia a month ago & this to me well It’s all confusing and so much to absorb as I have never heard of Ataxia & conditions, the progression, symptoms etc. I would like to hear more information not just from leaflets. It’s more understanding from people/ groups as there experiences tells more about the Ataxia.
Thank you I hope I’ve put myself across correctly & Appreciate your support and patience
Hi Paul do you know what type of Ataxia you have as that will depend on how you are most Ataxias progress slowly and you just notice slight difference over years balance gait speach are mostly affected and it can vary in different ways talking to groups like this can help
Hi thank you for your reply, I was diagnosed with spino cerebellar ataxia, I have looked in various sites about the condition but it’s wee bit 2 much to absorb. My condition varies. But I prefer to understand it more from other sufferers who can let me understand it better & from day to day how it’s coped with & advice also. I’m not very good at words. I appreciate your reply
Hi Paul and welcome. I got diagnosed in January and have had a battery of tests since to try and identify the cause. Presently the neurologist thinks they have identified a so far unreported gene but genetist doesn’t think it’s causing it.
My speech, balance and hands affected this year. So far I have found physio and trying to keep mobile helps. As people say it depends on the type and each individual is different as to how it progresses etc
Ataxia UK have been very helpful and I am currently waiting on a referral to their centre in London.
People on here and their experience are very knowledgeable and friendly
speech therapy when I got to see them last week. I’m banking my voice in case I need it in the future.
I’m trying to get somewhere to do hydrotherapy as I love the water and I can walk in it when it’s deep enough to support me 😀.
The book that Ataxia UK is very useful for information and the testing information. Good luck Paul and ask any questions people on here know a lot of information and where to signpost you because it is very confusing
Rarely, some ataxias are treatable. Early diagnosis is important as damage cannot be undone. Autoimmune ataxia is one. Some neurologists remain sceptical unfortunately. Good luck!
🙂 Some leaflets..don’t properly explain how a diagnosis of ataxia can have a knock-on affect throughout the body..this link might give more info than you already have..
🙂 For decades…I accumulated ‘ataxia symptoms’….but was ignored until I started having falls.
Symptoms and progression…can be very hard to predict....especially when the specific type/cause is still in question.
But..once a type is identified..this is possible..
I have spinocerebellar Ataxia sc6 my progression was slow at first but had to use wheelchair within in few years of diagnosis some days are good others not so good you learn to listen to your body when it tells you to rest you rest. You will have a number after your diagnosis as some Ataxias have different progress than others I have days where my speach is bad have just been told to speak slowly and pause when speaking think it depends area you live in what is offered for you just shout out if you want any advice there is always someone on here that will help
I’m not sure about number but i will check that out, I haven’t had speech issues yet, but I do use crutches for my balance. I have severe tremors & tinnitus, clumsy at times which is amusing my grandkids. I could mention a few issues I have, but to be honest it’s a bit depressing & my wife has noticed a few changes. My stepdaughter has C.M.T so I’m more concerned about her dealing with it all rather than myself accepting it. My only fear is falling & being more strict with my Diabetes as together it’s all depressing. Don’t know what to do. But day by day I suppose lol
Hi LittlepopeyeYou sound overwhelmed, that is quite usual if you have just been diagnosed.
For me it is over 13 years since my symptoms started. They crept up slowly and it has taken years to get to Sheffield, one of the specialist ataxia centres and all the time irreparable damage has been done to my cerebellum.
Become a member of Ataxia UK it is free. Read papers, both research and review, go on the NAF website. The US equivalent of Ataxia UK. Join a support group, we do learn from each other. Try to understand how you feel, a gut instinct can be powerful.
Just one thing I would say and it is only what I believe through my own personal journey. And that is "a label" putting a number or name to the type of ataxia you have is not always positive. Self fulfilling prophecy and all that.
Time is of the essence and if you do.have an autoimmune ataxia, to find out sooner rather than later is a good thing for your future health.
I disagree with one comment. It is now thought that gluten ataxia numbers are just below all the hereditary ataxis put together. This is just one avenue you need to explore.
Be proactive. Good luck.
Hi Paul welcome to the community. I was diagnosed with ataxia of unknown type in 2006, although it does seem to be hereditary (from my mum). Just to give you some reassurance in 2012 I was still doing things like riding my mountain bike and went to the Olympics in London. Obviously it does like many have said depend on which type but they all progress fairly slowly. In fact I only gave up full time work in 2020, admittedly 2 or 3 years later than I should have done. Looking back now I can see how much it was taking out of me especially the 30 mile a day commute. I have had numerous falls over the last few years, luckily nothing bad. I use a fold up 4 wheeled walker if I have to go more than 30-40 metres. But daily living is still ok with care and albeit a lot slower than before. Chin up and try to focus on what you can do rather than what you can't anymore. It'll just bring you down...
Hi,You are not the first to feel overwhelmed by an ataxia diagnosis. I also understand your need to get information other than on leaflets.
By far the best will be to contact a support group where others can speak from experience.
Where do you live?
If you contact me on woody1404@live.co.uk I will put you in touch with your nearest group and/or arrange a mutually acceptable time for a phone conversation.
Regards
Derek Wood
Hi well my physiothérapie was thé one that said i had antaxia that was à year ago ,i d been folllwed by à neurologue since 2019 she d never put à name to it ,my général dr knew nothing about it , i d been falling over à lot with no warning backwards and forwads , having 12 years ago 2 hip replacement thé ambulance was always coming out to me cause i was having luxation..i was walking like i was drunk ..any case it was never taken seroiusly since thankfuly finaly i knew i was nt going mad i belive its been gradualy coming on for 10 years ..soo i now walk with à walking stick have à handicap badge and à walker with à Nice little basket , i do physiothérapie once à week in à super clinique, i ve accepted there is no cure i ve now trouble swollowing ! My kids have adapted my house handicap toilet and shower ! I m not allowed to go up staires but i do crawl up ! I m not frightened any more in fact i ve become à warrier ! wont let it béat me , i belive it wont kill me and i m most likley to end up in à wheel chaire ( hopfuly not too soon ,i am à cat lady ( rescue cats ) they keep me on my toes , i ve tryed everything homéopathie subliment dosent work so i battle on and keep smile ling ! Luckily have no problem driving ! 2 home helps ..they are still doing lots of tests cause apparently there are 8 forms ! Last test was à lumber pucture ! My advice is to keep moving ! Good luck and battle on this group helps me a lot to réalisé i m not alone good luck à horrible illness , just accept it good luck all my love Lesley x
I’m sorry to hear about your difficulties & hopefully get better with it all. I was diagnosed with the ataxia just recently I had to go various tests i.e heal2toe, coordination fingers.& hands. But my balance is quite low & have to use the 2 crutches which I find in open spaces is so helpful. I’ve recently in last few week’s choking on meals & sometimes juice. I also get tremors on my right side. I am also diabetic with insulin x 4 But one big difference I have is my weight I was 16st over last 6-8months ( give or take ) I have dropped to 9-10st. I worked as a nightclub door steward for over 20yrs but now rapidly things have changed so quickly. I joined this site to find small information but everyone has been brilliant with advice & help each telling their own records, experiences & given very handy helpful information. The issues that many have makes me a small detail compared to huge endeavours individuals experience. Anyway I hope all goes well & things get easier for you.
Hi yes we are all in for à battle ! Its Nice to know we are not alone ! Yes i ve lost 10 kilos basicaly living on complètement liquide food xx
Had another consultant this evening I don’t have Ataxia
The Ataxia.UK Specialist Centre At The John Radcliffe Hospital - my experience
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