How to cope?

I'm finding it really hard to cope. I've felt like this for years, but I've always put it down to being a 'blip' because every so often I find things easier to manage and that there is a point in trying. This normally lasts for a few weeks at most and then I'm back to square 1 where I find it hard to motivate myself to do anything.

I'm tired of pretending to be ok, of trying to hide my ataxic movements, and of feeling self conscious all of the time. There is no-one I can be myself around - I think I used to be a nice person, but now I just feel irritable all of the time.

I'm thinking of asking my neurologist to refer me to a therapist or someone like that (I don't know much about it). I haven't had the guts to join one before, but how helpful are support groups?

22 Replies

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  • Hi there what you have just wrote explains how I feel exactly!

    I have asked my neurologist to refer me to a councillor who deals with genetic conditions but I have been waiting a year. I'm to scared to admit how I really feel and tend to put on a front!

    If you would like to talk feel free to message me x

  • Hi wildone,

    As a long term ataxian I have been where you are but would say that things can get better - I would strongly recommend making contact with a local support group as simply talking to othyers similarly affected is a great help. Often it is only people who have ataxia that fully understand the problems it causes.

    It would also be useful to get yourself referred to a Specialist Ataxia Centre rather than a 'general' neurologist as I have found that the knowledge & understanding of the specialist team is great.

    It may also help if you can get to speak to a Counsellor they won't know much, if anything about ataxia, but speaking to a Counsellor can be a great healer + help you manage your present fears & struggle to cope.

    Finally I would say don't try to hide your ataxia = you must not be ashamed of it, its just something that you have got. By being open & letting people know about your ataxia + the problems its causing you will find that generally people do listen & try to help if they can -- I know that this may seem hard but its not something that you will be able to continue to hide - give it a try??

    If you want someone to talk to or if I can help please let me know.

  • Hi. I've had ataxia for as long as I remember. When I was younger I put all my effort into trying to hide it - and I think that most of the time I was pretty successful. People didn't seem to know that I had a disorder - they just saw the clumsiness (etc.) as part of who I was.

    This seemed to work for me when I was a teenager. But the ataxia got worse and now I know there's no point in trying to hide it (I use a wheelchair) but I still try to. My movements attract attention so I move as little as possible in public (I know this sounds stupid). My family would be great if I didn't have ataxia but they have a very 'just deal with it' attitude and don't like to talk about it. Other people are friendly enough but I drive people away - they make me feel self-conscious and inadequate. I guess not being able to talk about my problems and pretending they're not there makes them seem worse.

    I hope things do get better, the thought of my life continuing like this is... not nice. Rationally, I'm not ashamed of having ataxia, but it's hard to think like that when I see other people's reactions to me. I don't know if this is because I'm paranoid or because I've got thin skin.

    Sorry for the rant. It's a release writingabout it - I've never tried before. Funnily enough, in this blog I've been more open than I've ever been, and it has helped. Maybe I'll talk to my neurologist about counsellors...

  • Hi,

    Thinking about it I suppose that I have been lucky (if you can say that!) I developed CA in my late teens so have really grown up with it (I am 52) so have had plenty of time to get used to it,

    I know what you mean about appearance to others etc one of the hardest things trhat I have gone through is coping wit loads of funny looks & questions from people - this was particularly hard when my 2 kids were small & they & my wife at the timne received all the stares almost as if people were thinking 'what are you doing with that???!!!' - seeing them hurt was often too much.

    Still I got through it thanks to their support + growing a hard skin I guess,

    I think what changed things for the better for me was when I went on a disability course taken by a bloke in a wheelchair & almost the first thing he said is - you are not disabled just differently abled - after that the fact that only 1 in 10000 adults have ataxia now makes me feel that iun a very odd way I am special I am 1 in 10000 not like being just 1 of 9999, I suppose its whatever works but when I am down which is quite often I remind myself of this.

    The other thing that really helps is a different mind set I have ataxia it isnt a problem to me (cos I cant do anything about it) so if anyone else has a problem with it well thats their problem!! I should say tho that this does tend to sort out your real friends from the rest which is a bit sad.

    I do believe writing about your feelings is a great release, next thing is just talking to whoever listens be it friends, GPs, counsellors or whoever - talking has certainly helped me.

    I won't try to hide its hard to cope & to soldier on but you just have to - that sounds glib I know but I am not too sure what else too say,

    Hope this helps + importantly remember you are not alone.

  • Thank you.

  • Hi glosman

    Yes I acknowledge that I am differently abled but that does not stop me feeling on the 'sidelines of life' which society just does not include. There surely is no doubt that ataxia is an extremely isolating disease -at any rate I find it so. One may not be toally alone in the UK but in a village1000 is quite a large number, so really it's a question of soldiiering on in a world of your own isn't it?

  • Hi I know that feeling trying to pretend everything ok when inside you feel like your falling apart its hard to explain to people who dont know about ataxia how bad things can get thats why I think these sites work cos you can have a rant and let everything out and theres always someone who knows how your feeling ,try counsellor if you think it might help or if you just want to chat im a good listener take care ( linda aka gossy)

  • Hi Wildone

    I agree 100% with the previous comments.Have been to support groups myself and benefited enormously.

  • I totally agree too. I was completely lost until I did the Expert Patient Programme course. It has taught me to come to terms with my condition and I now have the confidence to talk about ataxia.

  • Hi. What's the Expert Patient Programme?

  • I went to a group therapy course and found people who were in more trouble than I am. I had only recently been diagnosed and had just been told that the condition was progressive and untreatable.Although I realised that the answer to my depression was within myself it was helpful to have professional help.Just talking with other people was a help.This is why I find this site so good I seem to be able to express my feelings better than when I try to explain things to folk nearer to me.Geoup therapy is not everyone'schoice but worth a try!

  • Hi Wildone!

    Like you I'm no sooner 'up and coping' than I'm down and wondering what it's all about!

    I found it an intense strain trying to hide Ataxia, and agree it's a natural reaction to want

    to soldier on, pretend it's something that'll pass. Psychologically, the worst time for me

    was when I was trying to get diagnosed. Finally having it proved something was actually

    amiss, that someone believed me, was a turning point. In my case, I had to seek help

    from my GP for depression, though I had explored other possibilities, but had not attended

    a group. It's good being able to 'unload' on this site, not everyone can get to a group

    meeting, and being able to give voice at the drop of a hat is very important.

  • When I was diagnosed I was just numb. I pretended nothing was happening. Maybe that's why I have problems with dealing with it now. (I was eventually diagnosed at 12).

  • I was only very recently diagnosed in my late fifties.I had to retire from my job and give up driving.I can't even speak to explain myself as what comes out of my mouth is not what I mean to say! My G.P. is very good but I stopped seeing a counsellor after a few sessions as | felt it was no help but the Ataxia support group I go to once a month is great-

    I am going to my first MSA MEETING very soon so will let you know how it goes!

    I ,like others find it hard to accept that I am so dependant on other people after being so independant for so long.

  • Please try and attend your nearest Ataxia UK Support group or branch. Here you will find the help and support you need from people with and affected by ataxia.

    If there isn't a branch or a group in your area - why not let me help you set one up?

    Most of our branches and groups are run by people with ataxia and sometimes having a focus (such as running a group or a branch and helping others) can do wonders to your motivation and outlook on life.

    Tina

  • Hi Tina, I used to go to an Ataxia UK Support Group, which was great. I live in Spain now. I really miss the support of other people in the same boat.

    Love Berejena

  • Hi.

    in 1997 I have been diagnosed with SCA;

    it´s no use "crying over spilled milk" but one can only

    FIGHT this bl...y disease

    As I said: I´m having physio ( 30 min per session) twice a week, I have

    a pedal machine, I do daily walks (60 min) with my ( outdoor) rollator#

    I try ( lazy, lazy ) to do my balancing exercises deaily.

    I should be o.k. because I was diagnosed with SCA (MRT) back

    in 1997 & I´m still not wheel-chair bound.

    Regards

  • Yesterday I went to an induction session re Building Confidence and Self Esteem.

    I explained my condition trying not to slur too much, one person had heard of

    Friedreichs Ataxia but that was all.

    Talking to a room full of strangers is daunting, particularly when your speech is

    compromised but it broke the ice and conversation flowed. I hope to pick up some

    coping tips from the course!

  • Hello there

    Just thought I would let you know that talking really helped me and my family a few years ago. I have inherited a hereditary ataxia and my kids have a 50% chance of having inherited it too. Despite trying to explain to the school to try and be extra sensitive when teaching genetics in Biology, they showed our daughter a very distressing video and then proceeded to have a very insensitive discussion infront of her. They caused her real problems psychologically. We obviously complained a great deal but had to deal with the consequences.

    We ended up having group sessions and individual. It helped my husband a great deal. This was a few years back now but access to our psychologist has remained.

    I would definitely recommend asking your GP to be referred to a neuropsychologist. We were very lucky to be referred to a consultant neuropsychologist who fully understood the consequences of having a neurological disease.

    I agree with the others suggesting going to a local group. I personally find these 3 forums a great support. This one, the other Ataxia UK forum and the Living with Ataxia forum.

    It is easier said than done but I try to keep busy. I have bored everyone in the past so here is the link

    ataxia-uk.healthunlocked.co...

    Hope this helps and that you are feeling a little better.

  • my son has fredricks ataxia one of the worst forms of the disease,,he was diagnozed at the age of 13,,,by the age of 16 he began using his wheelchair part_time,,a year later he was using it permanately..Life has been so difficult watching someone you love waste away in front on you..Up intil late he has been the strongest one off all(or so it seemed) How wrong we were,,he too is guilty of botteling up his feelings and fears,,,before i go any further i shall tell you just how disbilitaded he is,,,,He no longer can use or feel his legs,,it is now working its way to his arms,,,he no longer can get in our out of bed without aids and assistance,,he can no longer get himself to the toilet and do the things we take for granted+the future,, well it terrifies me what lies ahead and where or what i can do as a mother,,,,Last night my son opend up to me for the 1st time since being diagnozed,,he cried his eyes out and said he rather be dead than live like this,,he truly does not want to see himself get anyworse,,he feels he has come as far as he can,,,every fall he wishes he will never get up???? This is my son,, the boy i love+will care for till the last,,,He truly has done everything asked off him,,we have tryed every possible means to extend his quality of life,,personal trainers,,keeping him as active as we possibly can,,but i guess there is only so much u can do,,,,H

  • (next part))He is only human,,his feelings must be heard,,it breaks my heart to see him this way,,ive told him about this website,,but he has no interest,,,ive told him to stop having silly thoughts,,he has so much to live for,,not die for,,,,wher do i turn,,what must i do,,he is my pride and joy and the thought of ever loosing him is tearing me apart,,,we knew 1day this could happen,,but how do u prepare fro such a thing,,we thought we were coping as a family,,,but we are not coping,,any advice on how to help him overcome his thoughts,,,im lost so i cant imagine how he must feel,,thank you for taking the time to read this extended letter of help

  • Oh how very sad and there is no good answer other than to hang in there and try to talk to as many other people with ataxia though this website it does help. Ted

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