Fear

[Carolss]

I would like to know about some things. If u r open to answering g my question I would appreciate that.

How and when in ur life wasit czdiscovered u had ataxia. What were ur symtoms. And how quickly did they progress. Do u know anyone who died? From what? I read one gets more and more debilated and loses contol of everything. I've been in quasi denial which I popped out if yesterday when I had to give 11 vials of blood for tests.

So now I know it is serious and can lead to an unpleasant demise.. I'm thinking about how I want to die. O haven't found one that was totally effective. I'd like to hear your experience with that,did u try, why do u want to live? I've been totally obsessing about how I picture myself losing it and it freakS me out...I feel terror because I dont want to die and cannot live with this. Some of u write posts that do not say your inner experience of fear? Horror, confusion, sadness. I want to find out about assisted suicide. Without driving I pretty much have no life and dont want to have a no life.

I realize, by my symptoms, this has been going on for about 5 yrs and no doc has spoken about this. It's really I read about all my symptoms and I have most of them and no dr has explained anything. They r unfamiliar with ataxia . Please tell me ur history and the progression. Having so many limitations why do u want to live?

[Pheobe13]

This is a hard one I’m not the person with this disease my partner is we are 4 years into this and yes it is progressive he has lost a lot walking speech bladder swallowing sometimes confusion some days he says he can’t go on he has cellebella ataxia but also now MSA multi system atrophy a rare degenerate brain disease progressive what do we both have to look forward to ? Nothing ! He has this disease and I live with it I was 55 when this started and we have lost and are losing so much every day but you just keep going

[pinjem]

Go and see an ataxia specialist if you are not already. My lovely local neurologist knew nothing about my ataxia but was guessing. Ask to be referred. Worth it. If already seeing an Ataxia specialist, then sorry, I can only refer to myself, I live in hope.

[Happyfacexx]

When we have an awful disease like ataxia we can become so focused on the physical that we forget we are spiritual beings having a temporary physical experience. We can grow spiritually without ever leaving the house, through love and forgiveness ,to firstly ourselves and then others ( you don’t even have to follow any religion ) we are so fortunate to be on this planet at this time in Creation . Each one of us is here for a reason, I suggest you learn to meditate ( I do a course called ‘a course in mastering alchemy ‘ ) try to get in touch with that part of you which is So much more than your physical body. And to anyone thinking about ending their life, I would say think about have you fully made use of this life? When people are in a situation where they know they will die ‘ like 9/11’ They all just try to phone their love ones and say how much they love them , none of them rush to make phone calls saying “ I could walk down stairs with out holding on to the rail”! Because in the end they realise that everything is about love, and the rest was never important! Basically I’m saying you have lots to do on a spiritual level, because if you didn’t,then you wouldn’t be here in the first place 💖💖

[benning]

Don't even think about DYING ,it's not inevitable,you can beat it or stay on top of it.

I was like you when I first got diagnosed,I didn't know how to deal with it. With exercise,research and positive thinking and ofcourse accepting the situation you can have a wicked life.

NO FEAR

[isabelalfaiate]

Dear Carolss,

Do not dispair, do no focus on what you lost but rather on what you are able to do. Ataxia is not easy but it is not a terminal disease. being alive is a terminal disease. I have had symptoms from 2007 and was diagnosed in 2012. I am now 65 and am still doing all my housework and walk unaided at home. Outside I hang on to someone rather than using a walking stick. In 2007 I could hardly write and today I can wite neatly again, my speech was a little slured then and now I no longer slur. I do physiotherapy and use minibike (just pedals) at home and I crochet for all my friends. I find it therapeutic and relaxing and good for my eye -hand co-ordination. Dr Thomas Crouse, himself a sufferer gives lots of good advice here is his link walkingwithataxia.com/ . Above all be positive, we are so lucky to wake up every morning. Everyday I think of five things that I am greatfull that day, sometimes I feel it is hard to find them but quite often I find alot more than 5.

Hope all goes well with you loo at the half full glass instead of the half empty and life will certainly be easier.

Best Wishes

Isabel

[isabelalfaiate]

Dear Carolss,

Do not dispair, do no focus on what you lost but rather on what you are able to do. Ataxia is not easy but it is not a terminal disease. being alive is a terminal disease. I have had symptoms from 2007 and was diagnosed in 2012. I am now 65 and am still doing all my housework and walk unaided at home. Outside I hang on to someone rather than using a walking stick. In 2007 I could hardly write and today I can wite neatly again, my speech was a little slured then and now I no longer slur. I do physiotherapy and use minibike (just pedals) at home and I crochet for all my friends. I find it therapeutic and relaxing and good for my eye -hand co-ordination. Dr Thomas Crouse, himself a sufferer gives lots of good advice here is his link walkingwithataxia.com/ . Above all be positive, we are so lucky to wake up every morning. Everyday I think of five things that I am greatfull that day, sometimes I feel it is hard to find them but quite often I find alot more than 5.

Hope all goes well with you loo at the half full glass instead of the half empty and life will certainly be easier.

Best Wishes

Isabel

[ww-wibblywobbly]

It's hard living with ataxia especially at the beginning. I was also suicidal in the first couple of years after diagnosis. About three years on from the diagnosis I started to take anti depressants, which I still take.

Do you have children, family, friends? Even if you can't do physical things with them you can still enjoy time with them. You can still discuss and help others with their problems. I find it very therapeutic to do that, even if inside you sometimes think that their problems are small in comparison. They are still problems to them. I find that contact with other people is they key to happiness for me.

You say you can no longer drive, neither can I. I live in a small village with no shops etc, and all my good friends live driving distances from me. I rely on my husband or others to take me anywhere. Which I do not like, but you have to learn to ask for assistance when you need it.

If you are having trouble getting around then see an occupational therapist, and maybe get a walker, wheelchair or any adaptations you need. You can still go out and do things but maybe differently to before.

Try to take pleasure in the smaller things in life, I think that everyone, ill or not, should try to do this. Do you have a garden. I love to look around the garden at the birds and butterflies. Do you have any pets? They are great company and always there for you.

We can beat Ataxia, I don't mean that we will become as we were before, but that we can persist and also improve. Repetitive exercises/tasks seems to be the key. Ask to see a neuro physiotherapist for exercises to do. Find tasks that you enjoy. I now make greeting cards, it improves my hand eye coordination especially with fine motor skills. It used to take me days to make a card now it takes me a couple of hours.

I have an electric assisted wheelchair. It changed my life. I can now go out and actually look around me. It's wonderful.

Tell yourself that you're not going to get any worse than you are now, and in fact challenge yourself to improve. It IS possible. The improvements may be slow but eventually they will come.

Ataxia is not terminal, so learning to live with it is what we must do. Learning and exercising. You can still laugh and enjoy things

I hope you can find any of my comments helpful to you.

Take care and please do write again on this forum, we are all there for you

Love

Alison xx