Going out of my mind!

Hi, I am Denise and have recently found out that something that I have been going through for over a year now is called Ataxia. I really thought I was losing my mind as last May I realised that I couldn't work out how to walk, oh I am talking 2015 not 2016. My hands don't work how they should but I can type! I don't understand any of this and I am still waiting for results on a brain MRI. Just would like to talk to anyone that is willing to chat as I spend most days feeling very lost. Don't really know what else to say at the moment. But, any contact is good.

19 Replies

  • Thank you Jean, it is something that can make you feel like you are going mad. I had never even heard of ataxia before and nor had any of my family or friends it also didn't help that when I did actually go a doctor last August because I had lost feeling in both feet and ankles that she said I was depressed it took 5 hours in A and E when it had got as far as both knees and in my hands to find out it wasn't just all in my head. I still don't understand it and I have more tests to go through, but I can type but harding write a word?

    I will look at other messages as I might have something to add.

  • I am in London SE18 and have tried to find people that suffer with any disability here. None so far. with me I was first told I had peripheral neuropathy so I looked that up and worked out I should be living in America! Anyway I would be happy to meet but south east UK could be miles from here. But I really do think to be able to actually talk face to face with someone that understands would be a great help. I am dreading winter again as apart from the hosptial and doctors I didn't leave the house for 6 months.

  • I went to new group that has been set up and met in Streatham and in August they meet in either Wimbledon OT Tooting- contact Ataxia UK as they can tell you where local groups meet all the best Sylvia

  • Hi Denise - you've come to the right place. You'll get some very good practical advice here. It won't take you long to work out that ataxia patients know a lot more about ataxia than the average GP. Sad but true. That's just the way it is I'm afraid.

    But you're never alone here.

  • Hi Iain, I do sort of get that, but it is hard to understand. I can type but can't open a can.

    I used to be a good cook and now just drop things. The first thing that really got to me was I couldn't peal an egg so threw it. I just made a mess!

    I did read an article that made me laugh " I'm not drunk I have ataxia!"

    Do any of you guys have a meeting place as I feel pretty loney!

    I said before I still have test to go, maybe I will get better, but one thing even if that happens I had no idea about this.

    drinks on me if anyone wants to meet up!

  • Hi Denise, Whereabouts are you? I run a Support Group in the Farnham/Aldershot area. We meet every 2 months to socialise and share tips & ideas or moan about our lot to non-judgemental fellow travellers.

    Ataxia UK have a list of such groups throughout the UK.

    Good Luck.


  • Thank you for the good luck, sadly I am in SE18 and have not managed to find anything here. I did not even know this web site existed and I think it does help to talk to anyone going through it as even my own family thought I was going nuts.

  • Dear Denise,

    You are not going nuts. But ataxia can drive u nuts! I am not a Brit (American) and not in the UK. I have no support group. Never heard of this either. Try to stay calm and sit or lie when you feel tired. N

  • Hi Neta, look up the mayo clinic they have been doing trials and its on your side of the water. I even spoke to them and they said if I could raise the funds they would take me on one of their trials. This is such an odd thing to have and have to constantly try and explain it to other people. One of the problems I have is I hardly ever sleep so this is like 24/7 for me. I also don't really have a support group as my family all live miles away and I tent to rely on one friend.

  • I will check out the Mayo Clinic. To be honest, I never met or saw anyone with this. I have been warned that I am too negative and twice I was "censured" because I wrote things that were not to the liking of certain leaders. But fact is the American NAF, never says anything and UK Ataxia also doesnt publish their findings if any. Either this is the biggest secret in the world or quite simply Big Pharma doesnt really care because its too small. Also, no one seems to tell CA sufferers what will happen if anything. :( N

  • I wish I had answers, but today I have found out I am getting another MRI, but no more information yet. I think it is so difficult to understand because it actually does not make any sense. I actually forgot how to walk. But anytime you want to chat please just send another message. Here is a bit of info, my family have a long chain of mental illness and so when this happened to me I was originally signed off as being depressed. But it doesn't get us all and I never went for that. It is hard to stay positive but I am happy to be your friend, if I have not just scared you off!

  • No you havent scared me off, not at all. Just I must be the only person in the world w/o a smartphone so I dont see my email automatically (ignore italics) . Depressed? Who wouldn't be? I guess new cancer patients etc are also depressed. I would love to be your friend. Why not? BTW, who did you speak to at the Mayo Clinic? Be well N

  • I took their number off the web site and just made a random call I have no idea who I actually spoke to, but there is quite a lot of info and they get quite a few calls from people in the UK. I was never going to manage to get the money together to go there. I just find it really frustrating here as I am still waiting for MRI results that was done on 29th June. I emailed my consultant and the only reply I got back is I should not worry but he is booking me in for another MRI!!

  • did you call them?

  • Ataxia.co.uk first of all and apart from the excellent advice there, you can realise how many others with ataxia there are, you are not alone. Also some good links to follow up. Reading through some of the other threads on this site may also help, I know friend and I have found responses very thoughtful, practical and it helps especially on a tough day. Keep your chin up x

  • Hi Denise

    I was diagnosed 14 months ago. I spend most of my time in front of the computer because, I too am very limited in physical activity. I do try to get out a few times a week if I can find someone to walk with me. I try to exercise most every day. A good physical therapist is a great way to learn exercises specifically for you. If you ever want to chat I check this site often and am happy to be there for anyone going thru the same issues. Remember to keep smiling, it's very important!

  • Hi Cubsfan,

    thank you for that message, I am still in the don't know what caused this stage and I am not sure when that might be. I had a MRI on the brain done on 29th June and actually emailed the consultant yesterday, the reply was I shouldn't worry but he is booking me in for another one. No more details!

    I do have a good friend and on the days they can make it over to my house I too walk as much as possible. I can even make it to a local shop on my own, but only on a good day. My other big problem is that I was on ESA payments and because they wanted me to attend a health assement 10 miles from my house my GP wrote to them asking for a home visit and they didn't accept it so cut all my benefits, I am currently in the appeal process, if you or anyone else has gone through this I would be grateful to find out.

  • Hi Denise

    I had countless MRIs while 6 weeks hospitalized and they wanted more after my discharge. It was my understanding they were for comparative purposes mostly. I got to the point where I had to be sedated for the final few MRI's. After discharge my regular doctor (PCP) of long standing asked for no more and that was fine with me. So much is still unknown about the different forms of Ataxia. I still haven't gotten a definitive answer as to the cause of mine. I was 53 when I was diagnosed and had never shown any signs of ataxia until that point in my life.

    I'm from USA and some of my terms may differ from yours. My PCP I believe is the equivalent of your GP and my SSI I believe is the equivalent of your ESA. After many months and letters and visits I have finally gotten them to the point where I don't have to appear in person for SSI appointments. It is in your best interests to have an exceptionally good relationship with your personal physician as well as your disability attorney. My relationships with both of these professionals has proved very valuable to my peace of mind. Because of the unknown nature of ataxia it is difficult to find professionals who comprehend the issues we face. I have also found continued physical therapy is the best way to remain active. Compassionate friends and helpers are worth their weight in gold! I'm just now beginning to venture out on my own under certain circumstances and it's scary and I have to constantly be aware and think ahead of every movement I make and every physical obstacle I encounter. There are many days when I'm stuck at home and it's important to create the best home environment possible. Going through this experience has opened my eyes to how compassionate some are and how completely ignorant and inconsiderate others are. I always try my best to be thankful and to smile! An old friend of mine with Parkinson's used to tell me, "it beats the alternative!" Hahaha Hope your day is a good one!

  • Dear Cubsfan,

    I actually spoke to Neta earlier who is also from the USA. I was originally diagnosed as having peripheral neuropathy and every bit of information I got was from America. There seems to be very little help here and I think there should be more of a cross over between the two; at least Ataxia is easier to spell! I told Neta about the Mayo Clinic that gave me a lot of useful information, your side of the pond!

    I hated the last MRI as they made it so I couldn’t move my head at all and I don’t very much like my consultant either. I do have a really bad sense of humour but it does keep me going. I even made my brother laugh and if you knew him............................. Anyway that’s another story. I do really appreciate your feedback and we are on the same lines. Until they have gone through the rest of the tests they think I should have I am not entitled to any physical therapy. I do have some good friends and my family helped when my finances went (totally went). I am 52 and this started for me in March 2015. I will be honest though I really find it hard to get my head around this – I can type but my cooking skills have gone downhill. I am also very good at dropping things as I forget they are in my hand. But I did give up the throwing things with total frustration as it is now more difficult for me to clear it up!!

    Anyway very happy to know you.

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