Big Hi

Following a very frustrating two years I finally was given a diagnosis last week, I thought I was becoming a hypochondriac or just lazy. I could not work out why I could not walk in a straight line and was ready to go back to sleep anytime.  I have worked all my life and found it difficult to come to terms with not being productive. I do not feel that I can truly function, feeling like I have the flu all the time. I have always been an active person and have struggled to cope with caring for my elderly parents whilst trying my best to appear normal so I don't worry them. Both my husband Nick and myself are just so pleased to have a reason and a name for the condition so we can carry on with life rather than being in limbo. I moved from the South to Herefordshire just about the same time this all started, so, any communication with another sufferer would be great. Looking forward to hearing from you, thanks. Ali.

9 Replies

  • Good morning  Ali-G ☺ I'm up early for once!! It's good news finally getting a "diagnosis" of "why".  Keeping up the appearance of "being normal" is utterly exhausting, great to finally say no to all requests and focus on you 😆 Whether  we like it ot not some people notice our degeneration and some don't ~ once you all settle into your new normal your parents will be ok ☺ Do you know what type you have?? I  have Progressive Episodic Ataxia 😩.  This site has been fantastic to read back through ALL the posts just for day to day Living with Ataxia information, it really helped me understand Ataxia ~ and giggle!! Do yourself a favor and find the time to do it!! Unfortunately I'm in Australia ~ so we can't meet up for coffee 😝 Hopefully someone lives near you💕

  • Hi - bit of a trip to Aus for a coffee, but thanks for reply, your a star. I have Spinocerebellar Ataxia, only received all the information through the post today, but, so helpful, and informative. This will be a life line, have a Bonsa day !!!!!!! Thanks and speak again. Ali

  • the main thing is that you have a diagnosis it took me 4 years to finally be diagnosed - up until then I WAS TREATED LIKE A HEAD CASE as when I said I could not feel pin pricks in my legs and feet they kept on asking 'are you sure you cannot feel that ?' so it was a relief. try to do as much as you can while you can as you do not know how the disease will progress and although it is useful to be in contact with other ataxians every case is different and I am now housebound and n a wheelchair but I CONCENTRATE ON WHAT I CAN DO NOT WHAT I CANNOT DO. excuse typing but that is hard now as well. I don't think there are any meds that help- the main thing is to keep active as long as possible- I go to mainstream exercise classes as well as chair based exercise. my partner of 21 years left me as he could not cope but it is a relief as I can do what I like. I do find the fatigue very wearing but just accept it. I have normal pressure hydrocephalus and was supposed to be having a spinal tap this week which they thought would help my walking but it was cancelled so I hope to get that done later in the month. all the best there are many things in life to enjoy. Sylviaxx

  • Hi Sylvia, thanks for the reply, I am sorry to moan about waiting a whole two years for a diagnosis, I now know compared to some I am very lucky. And you are so right I intend to enjoy every day, my life focus's around my two wonderful golden retrievers and walking them is such a big part of my life, I am also fortunate to have a great bloke who is so supportive and does everything with such an incrediable sense of humour. My hiking stick has become my mate and off we  wobble for a walk in the country with my girls (dogs). I get home and fall into a very happy heap. I also have been caring for my parents 86 and 81 for the last ten years, i intend to carry on this role but will have to change the way I do things. Hope you have and great day Alixx

  • at least you have a diagnosis - it took me 4 years to get one and they said I had mixed connective tissue disease and I knew it was something else so asked my GP to refer me for a second opinion and I now have a wonderful neurologist that I have total faith in. I am now in a wheelchair and the fatigue is really bad but I plough on and go to exercise classes at the local college and also to a disabled centre where no-one asks you what is wrong with you as they all have problems. I applied for attendance allowance ( NOT MEANS TESTED ) and that helps pay for cabs to places but if I do too much one day I am in bed for 2 days so I need to plan carefully . there are plenty of things I still can do so I focus on those rather than the things I cannot do- I live on my own as 3 years ago my partner of 21 years left as he said I was too disabled- that was hard but at least it is a relief as I can now do what I like instead of being constantly criticised . OK my walking is nil now and I have trouble swallowing , cannot use my hands so have had to give up playing the piano and violin and going for long walks but there are plenty of things to enjoy. your parents must understand the condition. there is so much info from ataxia uk that they can read- the little card they do is very helpful to explain the condition - I gave that to my exercise class tutor and when I had a fall she knew why I fell and if 2 people can help me I get up fine. I think you will have to make your own health a priority- I still drive short distances but no longer take the grandchildren to classes as my vision is getting worse but the DVLA say I am OK at the moment to drive.look AFTER yourself - it is hard if you are used to looking after others but if you do too much you will feel it. all the best Sylviaxx 

  • Hi Sylvia,

    I've not written in a while, but I'm afraid my friend's situation has not changed, she's in a wheelchair, her speech is slurred, cannot do anything by herself. She still has not had a clear diagnostic in the UK,they keep saying is Functional Gait Disorder- meaning her body went into shut down due to stress and depression.Hard to believe when all her symptoms point to some form of Ataxia, but her neurologist refuses to do any further testing to prove or contradict the Cerebellar Ataxia diagnosis she had abroad. It started with her left leg about 5 years ago and then last year in September it got worse.

    GP and neurologist say that she will get better with physio and speech therapy,however no significant improvement can be seen. She is actually getting more depressed when she is asking for further testing and they won't do it and when she realizes that she is not getting any better.

    What tests did you have? Do you have a carer- full time or so many times a day?

    All the best,


  • I live alone since my partner of 21 years left as he could not cope with me being disabled. It took 4 years for me to be diagnosed- they thought it was in my head- I saw a neurologist who is the ataxia expert at the local hospital and he just said it was the normal ageing process. I could not feel my legs and feet and all they could say when they stuck pins in me' are you sure you cannot feel that. ?I went back to my GP and asked to be referred for a second opinion ( up until then I saw a new rheumatology consultant so I saw the senior rheum consultant and he saw me walk and said immediately it was neurological. then I SAW THE NEURO GUY WHO IS A WHIZ kid and I had MRI scans, nerve tests when they give you shocks to see if the nerves are dead and endless blood tests which show I have something called MGUS which could lead to myeloma . I have a wheelchair but I cannot use it to get out until there are ramps fitted so  can get out- now I have to be pushed in a manual wheelchair until then. Last week I was supposed to have a spinal tap - they do a lumbar puncture which may reduce the hydrocephalus in my brain which may help but it was cancelled so I have that in 2 weeks time and that may help my mobility which is shit at the moment. I have  a carer who comes twice a week and more if needed. I have 4 grown up children but I don't expect them to spend a lot of time with them. I still drive short distances but the fatigue is the worst symptom - If I do too much I am in bed for the next day. I think the answer is to go back to the GP and ask for a new referral. My GP said that in 40 years he had never seen anyone with my condition but he was happy to refer me. I keep hoping spring will help- the cold weather definitely makes thins worse. I have a counsellor who comes to the house when I need her and if I feel really low I ring the Samaritans which is good as they are there 24/7. try and keep positive but it is hard all the best Sylvia

  • Hi Ali,

    And welcome.

    Like you, I waited almost 2 years for a diagnosis. It only took them 17 months though - so I guess I was "lucky" ;)

    This was just over a year ago. The diagnosis was spinocerebellar ataxia too (idiopathic - because they don't know the cause - and they have looked!). Getting the diagnosis does come as a relief. Even when it's not the best news in the world - at least now there is an explanation for the symptoms. So it's not just being lazy or a hypochondriac.

    Symptoms are progressing quite slowly for me (although I do appear to have periods where it seems to get worse, quicker). It could be SO much worse though. Just reading the posts on here makes me realise how much worse it could be. It probably will be in the future - which just makes it SO important to do everything that I can still do now. Time has become more important than ever.

    In hindsight? Once I had the diagnosis, I mentally let ataxia take over everything I was doing. It became the only thing in my life. And I shouldn't have. Yes, the future might be different to the one I'd always expected. But it's still a future. Even better now that the sun is shining again :)


  • Hi Iian, thanks for reply. You are so right about the attitude, I am keeping very positive and thankful for the things I can still do. My family have been great, my hubby is fab and keeping my sense of humour is more important than ever. I am lucky that I live in Herefordshire and the surrounding countryside is beautiful, really making you feel good when the sun shines. Speak again, take care. Ali x

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