My moods

My moods

I am 44 years old and I can hardly walk anymore I got told I had Ataxia a couple of years ago my mum got told back in the 1960s by her local hospital that she had ms but she had a mri scan about 4 years ago at my neuron hospital that she hasn't got MS but the same thing as me.

My oldest son had been told about 2 months ago That he has Ataxia.

The way I am feeling just now I wish I could get away from here not be here anymore

16 Replies

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  • Hi Jim

    Thank you for your post. I am so sorry you and your family are having to go through this.

    Ataxia can be devastating. There are no two ways about it. You have limited control of the physical symptoms and progression of the disorder BUT... you do have control of your psychological and emotional approach to it. Try to live for the day and not think about what the future may or may not hold. I know this is much easier said than done but ataxia or no ataxia, nobody knows what tomorrow holds. As well as being Jim you are a dad and a son and your family need you, again ataxia or no ataxia.

    I was diagnosed with ataxia over 24 years ago. Believe me, there have been many times I have wanted to run away. But I never have. I have always gritted my teeth, put a smile on my face and got on with it, trying to make the best of a bad situation. You can do the same.

    Use this site. Everyone on here knows what you are going through and has similar frustrations. It is an incredibly supportive environment and is a great source of comfort as well as providing a listening ear.

    Best wishes

    Harriet

  • Hi Harriet,

    Hope you are well and enjoying Lytham

    I was having a nosey at this site (haven't used it much)

    I read your post and agree wholeheartedly with it.  I think it showed both realism and optimism for Jim and that although Ataxia limits us and can be depressing at times, if we can cope with that, we can cope with many things that come along.

    Take Care

    Derek

  • Hi Jim :) I really agree with Harriets response. Yes life can be mean, and bad things really do happen to good people. You can show your son how to live with Ataxia. Jim when "the going gets tough, the tough get going". The type of Ataxia that plagues my life is Progressive Episodic Ataxia, and it makes me soo sad sometimes, as Harriet said we are in charge of our minds - I too have a daughter, my father passed thinking he had MS, hmm. You will drive yourself crazy with "what if". Whatever Dad had, he did instill pick yourself up and do whatever you can. Please don't feel like it's all in vain, it's not. Possibly go to your GP for a referral for counselling, it does help :) Jim I'm 46, I've been in your head space - you can do this ;) Everything will be ok.

  • Hi where are you

  • Thanks jools where are you 😊

  • Hi :) I live in Australia, Far North Coast of New South Wales , near the Queensland border, I'm at the beach. I used to go to the beach at least 2 times a day, now I'm lucky to go once a week :( Where are you?!?!? You look cold!

  • Yes I live in Glasgow Scotland uk

  • Hi Jim

    I lived in Glasgow for 17 1/2 years but am now back down in Lancashire where I grew up. Are you in touch with the West of Scotland Branch of Ataxia UK?

    Harriet

  • Yes I used to go last April I would like to go back in the new year

  • Fabulous. You should!

  • I think we all have days like this and the run up to Christmas is a bit grim as you cannot be the life and soul of the party any more. Hell is other people- they do not know how to treat you but most of my friends treat me the same as ever. they find it hard to get used to the fact you aren't as active as before but I tell them I am still the same person although I cannot walk and have to have someone to push me in the wheelchair. I am getting a w/c that is electric and the council are going to put ramps in at front of the house so I can get out on my own - perhaps you need to see the neurologist and explain the situation. I did have a counsellor as I found the change f rom being active to being dependent hard- I live alone now as my partner of 21 year left me on Christmas eve 3 years ago- at the time I thought I would never recover but I realise he was a pain and I am better off on my own and I can do what I like when I like. at least on my own I can swear and curse as much as I need to.! Keep going and try to do something you enjoy every day. Good luck !!

  • Where are you from

  • I live in Greater London but cannot get out any more. my ataxia has got a lot worse in the last year. I am OK on the whole- the GP offered me anti depressants and counselling but I am managing OK so far . I see the counsellor when I feel I need to but it is about adjusting to having ataxia and not being able to do the things I valued most- long walks , playing in an orchestra etc. My 3 adult sons are a great support but some 'friends' cannot cope with it. I tell them I am still the same person just cannot walk any more. at ;east the decline takes place over time- not like people who have accidents and suddenly their whole life has changed. I have just got a new pair of glasses that look like yours !!

    keep strong and happy

  • Jim there is a bloke called gary1974 who posted recently he lives near you!! Maybe you can get in touch? !?!?!

  • Hi Jim😊

    Yes, click on Gary's post, you'll see more people not too far from you😊xBeryl

  • Thanks

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