Newley diagnosed with cerebral ataxia

[Chris501]

I can't handle this. I was diagnosed a year ago and am finding it very hard to accept that I can't do the things that I used to do such as going away on holidays, getting on and off buses etc.

Christine

[JillJ]

I don't think you are alone. I am 50 and was diagnosed with late onset idiopathic cerebellar ataxia in March. I can walk but am wobbly at times and have become somewhat obsessed with steps/stairs...particularly going down...if there is nothing to cling onto!! Lots of odd little symptoms at the moment. Don't worry, I think many feel the same and I am sure you will find encouragement from others on this site. Try and adapt and not put yourself in situations where you put yourself in danger.

[stedman in reply to JillJ]

I received physio exercises to do daily, at first supervised, now it is up to me.

I do them daily as they keep muscles working and help to centre.my balance. I only use my stick occasionally or stay resting. I continue to drive using driving glasses to protect from the sun, daytimes and protect against lights of oncoming traffic. My events seriously incapacitate me and usually end with a Doctors visit. These events are considered dangerous and require hospital admission to test for cause and to scan for condition. I accept the effect of lost ;mobility as I feel good and potter agressively. ;-))

[Alex100 in reply to JillJ]

I know going down stairs, I hate it too, because that will help your body fight the ataxia and slow the onset of the disease

[Iain_100]

You're most definitely not alone Christine. And you've come to the best place to talk to other people who know EXACTLY what you're going through.

Like Jillj, I too am 50 and was diagnosed with late onset idiopathic cerebellar ataxia. But in March 2015.

And it feels too easy to say this now. But first things first, Try and do exactly as Jillj has suggested. Don't put yourself in danger. Ataxia on its own is hard enough to deal with. Ataxia with a broken arm/leg is so much harder.

You should accept it eventually. And when you do truly accept this new reality (for that's what it is - a new reality), your future will seem a lot more positive than it might at the moment. Not the future you had always expected, for sure. But it *is* a future - just different to the one you had always imagined - and wanted.

If you ever want to chat one-to-one with someone who has been in exactly the same situation (it took me about 6 months to get my head around the new reality - six pretty hard months psychologically), then my direct email address is iain@100trains_dot_com.

It is what it is.

Iain

[Cubsfan]

Hi Christine

I understand how you feel completely. It has been 14 months for me. I'm 54. I'm finally out of the wheelchair and using a 2 wheeled Walker. Let your mind find ways for you to do the things you enjoy, like being able to get around outside. In the past 14 months I have learned many new ways to do things. Have trust in people to be compassionate when travelling. I have found that airlines, taxis, Paratransit, Uber, hotels, etc have been more than accommodating in helping me reach my desired destinations. Keep a positive attitude and remember to smile!

Robert

[neta]

Dear Christine

Just wrote a whole long tirade and it vanished so this will be short. Lots of good advice here. I was diagnosed with CA in 2010. Everything gets gradually harder. Most people are well meaning but not all. We "aged" just 30 years too soon. I am also not handling this new life too well. You are not alone (not sure what that means actually). When you feel very bad or hopeless, sit down and rest. Otherwise exercise like mad. Good luck. N

[Paul_boulton]

Thank you everyone for replying to my post,it has really helped knowing I'm not alone

Best wishes to you all

Christine

[TedTom]

Hi agree with other posts and the good advice given. My friends reaction was denial, working harder and harder to manage situations so that she could convince herself there wasn't a problem. This approach eventually exhausted her to the point of almost a mental breakdown. Thanks to the help of all those at the Sheffield Ataxia centre she was able to access a package of support including Cognitive Behaviour Therapy. She hated the idea of this and it took a lot to get her to attend but it was the most important thing ever. Without trying being too melodramatic I shudder to think how things would have been had she not had this as the frustration and sadness over losing so much of her previous life as it was , was becoming so hard to cope with.

I think it is Iain who posts on here who has talked about the need to accept,saying how hard this is but how crucial. The CBT helped here I think. Acceptance isn't defeat its the opposite. We have found many, many helpful comments and advice on this site and it makes a difference. Friend was 35 when diagnosed by the way.

[Iain_100 in reply to TedTom]

Guilty as charged TedTom

Yes, acceptance is key. Once you truly accept the limitations of ataxia, and a different future to the one that you had imagined would always be there, then it is like a huge weight has been lifted.

Definitely something that warrants the most effort.

[joecampbell94]

Hi Christine, I am joe I am 22 and was diagnosedwith spinocerebellar ataxia when I was 17.

Being diagbosed with ataxia is NOT the end of the world, it is the beginning of a new one but I won't lie it is a hard world to succeed in. I was diagnosed 5 years ago when I was at the start of the rest of my life ready for work with great potential. In my teen years I played football,rugby, golf and cricket and had trained to be a mechanic but instead I am currently living in Spain with a family run pub. My life is very different because of ataxia but its not over.

[Iain_100 in reply to joecampbell94]

I love reading stories like yours Joe!

Yes, there are so many negatives that come with ataxia.

But, as you say, it's not the end. Just the start of something different

Where abouts in Spain are you Joe? I plan to travel down the Med coast, from north to south, and would love to meet up on the way if possible.

Iain

[joecampbell94 in reply to Iain_100]

Hi lain I am living in Gran Alacant about 10 mins away from Alacante airport, lots of accommodation and great beaches

[Iain_100 in reply to joecampbell94]

Cheers Joe. I'm starting from Sant Feliu de Guixols in the north (after visiting Girona). So it might take me a wee while to get down to you. Originally, I had planned to walk between the towns/resorts too. But will now only walk within each of the towns (most have some sort of promenade) and use some form of transport in between. Much more sensible

Have you got a Facebook page? You can follow all of my daft ideas on:

facebook.com/globalwalkfora...

Not many great sunsets over water with the coast being south-east facing - but the sunrises will be spectacular. And I'll be taking pics as I go. Can't wait.

Iain

[february]

Dear Christine, You are definitely not alone in your "ataxia" journey! I'm 62 years young now, diagnosed with Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7) twelve years ago, although I had very minor symptoms starting about eight years before diagnosis. I have mini-pity parties occasionally, although they're short-lived! At times I feel very frustrated with this. Other's advice is wonderful! I try to count my blessings and relish what I can do rather then concentrate on what I can no longer do! Something I say to myself on a daily basis is, "a woman is like a tea bag, she never knows how strong she can be until she gets into hot water"...,ha! Of course, this can apply to a man also! Anyway, try to eat as healthy as possible and exercise (safely) for strength and balance! And welcome to this site! My best to you..., ;o)

[Iain_100 in reply to february]

Mini pity-parties are a necessary evil as far as I'm concerned february. It's an old adage - you have to experience the dark, to truly appreciate the light.

I sometimes worry that I come across as an over-exhuberant, and "too-happy with his lot" kind of person. I'm not always so upbeat. But when I am, it certainly puts ataxia into perspective, and makes it so much easier to cope with.

Keep smiling

[february]

Thank you for your kind comments, Lain-100, as it's comforting to know others understand! My best to you..., ;o)

[DeniseLB]

I am pretty much in the same boat, although I have more tests to go through. I hate to say it but I don't understand it either, but you are not alone. I think there is a way we can do everything I am just trying to work out how at the moment. I promise I will find a way so don't give up.

[Piero]

Chris, you're quite correct, you won't be able to do all of the things you used to do ..... But you may be able to still do many of them although in a different way. I was diagnosed SCA late onset around five years ago. I still go on holiday, I still tend my oversized garden, I still drive and for the first time in my life enjoy supermarket visits as a half full shopping trolley is a great walking aid. Of course I no longer go hill walking or sadly fishing but with the dramatic reduction in available energy which accompanies SCA, what I have before me in a day is usually sufficient.

I have a wife who is a wonderful help. By firmly grabbing one of my arms she can triangulate my stance and so prevent me toppling over - something which has occurred many times. This allows for a social life.

One can't exactly rejoice at the diagnosis and the progression of the condition but despite its limiting presence, life can still offer a deal of pleasure and interest. Accept what's happened and live as completely as you can within its limitations. Good Luck

[TELEEN]

Hi i have cerebral ataxia,ive had it for 16yrs,my bro also had it,we have it from our mother..i have lost my hubby a yr ago so now im going it alone!!!i never go on holiday..cannot do the garden...or buses,and lots of other stuff so i know how it feels..You really do have to get your head round it and accept it!!..it cannot be fought!..its your life now so learn to handle it,exceptence is important for you to move forward and deal with the stuff this condition throws at us...all the best to you..

[Trinity1948]

Hi TeleenNice to know someone else has had Ataxia for 16yrs like me.My grandfather,my mother,my aunt and cousin have all developed late onset-I'm now 79 and this last year has become more difficult.I knew my condition would deteriorate as my grandfather lived with us and I looked after my Mother.Acceptence is so difficult!

[wibblywobbly]

hi,

life only really changes for the better once we have acceptance. However this took me 5 years to work through to get there. I'm so impressed at you Iain getting there in just one year!!! Wow

I was diagnosed in 2010, with a genetic sca - type unknown.

two years later I could hardly do anything. My depression was at an all time low and I felt exhausted just from trying to water plant pot with a half full watering can. Even my pt thought walking was going to be completely over for me!!

but now I accept my condition I can actually do more😊. I work hard at it. I see a pt for hour long sessions twice a week, I make greeting cards to work my intricate skills (was horrifically difficult at first but has got easier), I walk as much as I can with stick or wheelchair and my distance has improved, and I sleep for two hours every afternoon.

what I'm trying to say is although there's no cure or treatment yet we can help ourselves. We have to start small with an action and repeat it, repeat it, then we it starts to become easier we add to it to make it a little more difficult etc etc. If you choose something you enjoy it's better. Little gardening, making cards for example. I also hand make bread to strengthen my arms.

we can still do things but differently. Most people are actually very helpful when you go out too. Just try to do things safely.

I completely understand what you're going through. The shock, the grief for your lost life. But it can get better with a lot of hard work and rest.

Get help for accepting this bloody illness if you need to. I did. I saw a counsellor who deals with handicapped people and I take very small dose of anti-depressants.

good luck. We're all here for you

[glosman]

Hi, I understand how you are feeling although I am in a slightly different boat. I have had CA for over 30 years being diagnosed when I was about 20 & I can remember how devastated I felt when I found I could not run or kick a ball to play with my son in the garden. I don't think you ever get over not being able to do what you want but you do grow to accept it + then look for the positives there are always ways to do what you want they may be different than before ataxia but I believe if you want to do something you can find a way. I have been skydiving, scuba diving & lots more, drive everywhere, travel & enjoy walking with my walker.

Joe mentioned Gran Alicant, Spain is very disabled friendly - beaches, accommodation, esplanades etc etc + by getting airport assistance (which is free) travel is easier than when I was without ataxia.

Trick is to adopt a different mindset you can still do most things but just in a different way - this does take a while to get to though sorry don't think there are any shortcuts. Talking really helps especially through these type of forums with people who 'know' + try to find a local ataxia support group near you.

Hope this is of some help.

[rankin1st]

a lot of you travel i see, are we able to travel with vertigo like symptoms doesnt it make it worse? my hubby gets so tired just walking 40mtrs i cant get him to see that having a wheelchair would give him freedom so he is housebound at the moment, any help in helping him would be great, at the moment he is so dizzy he cant sit up without vommiting but we are hoping that will subside does anyone else get this?

attaxia has just been diagnosed, and we are getting a referral to sheffield but any advice in the meantime would be really helpful.

Thanks for the positive comments it has encouraged me as we are both really struggling with all the adjustments finanacial emotional and physical at the moment. I am sure it will get better once we gain acceptance.

thanks