As soon as I get out of bed I change and then the episode kicks in. I am unable to walk without help, so I use my wheelchair. I also have slurred speech. This last until mid afternoon, I slowly get better and usually by evening I am better. I do however still use my wheelchair, because I am still unsteady but at least I can talk 
hi I really enjoyed listening to your story for which I can relate to a lot of things that you are going through.I am 37 now and things are progressing fast now… I have you in my heart and prayers…always take good care of yourself so you can be able totalk…speech can get messy…so keep up all you are able…
Hi i am 57. I was diagnosed in sept 2008. I can’t walk can’t write and have slurred speech… Need a wheelchair. Depressed a lot. Sometimes I am so down and cry myself to sleep. I sleep with a ventilatôr.
I know how you feel and empathise with you
My ataxia is there all time. I use chair and sit on rollator and use legs to push myself backwards round house, its easier cos the swivel wheels at front are then behind me for turning into doorways.
I use mobility scooter to walk my dogs. My speech depends on muscle tone but at best its only intelligible to people who know me or can understand sign. I'm deaf too so face-to-face communication takes alot of effort and concentration. Trying to speak long sentences sends muscles into spasms and whole upper body is more jerky from effort of trying to get all the words out clearly.
I use a communication aid to preserve energy for longer sentences and just say easy answers verbally, yeah, no, hi, bye... simple commands to my dogs.
I'm usually knackered by the end of day and need to lie in bed to watch telly so can rest my back from sat in chair all day.
I can still walk in a fashion, a stick is a must as my balance is so poor. My speech is very poor though I am learning to slow my talking down and that helps. My handwriting is poor but again writing slowly and bigger helps, I do believe sufferers of this tend to want to write small. I am pretty much the same all day though I tend to get a little worse with stress and tiredness. I also have to try and plan my day more because of toilet problems, this is not a problem when at home. People tend to not mention central muscle problems and the inconvenience of it, but I like to say more or less as it is. Life is becoming a drag, and now it's snowing which doesn't help.....
Got to keep strong and fight
I'm almost 59 years young, diagnosed nine years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause). I use a cane when I leave home to prevent falls, although am still able to walk, carefully, in my home without it. I find my ataxia symptoms seem to get a bit better as the day progresses, although when tired, my speech gets worse, as well as everything else. Actually my speech is always ''slurred", no matter what time of day. If I overdo activity one day, I pay big time the next, as I'm useless and my ataxia symptoms are really exaggerated! ;o)
Very similar to me Rose, I feel I know my way adequately around my house to go without a stick, I sort of know where to grab or stumble into a wall. My biggest prob (to date) is confidence, it's shot. I still manage to work but for how long I don't know. I have CA but cause and type unknown.
rose said:
I'm almost 59 years young, diagnosed nine years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause). I use a cane when I leave home to prevent falls, although am still able to walk, carefully, in my home without it. I find my ataxia symptoms seem to get a bit better as the day progresses, although when tired, my speech gets worse, as well as everything else. Actually my speech is always ''slurred", no matter what time of day. If I overdo activity one day, I pay big time the next, as I'm useless and my ataxia symptoms are really exaggerated! ;o)
My ataxia affects me at varying times of the day. I now need to use two walking sticks outside for walking and have a mobility scooter for popping to the shops and such. I can usually manage with one stick at home through the day. Evenings are usually worst for me! Though I get pain throughout the day, it is evenings that the pains tend to kick in badly. Ataxia affects me in different ways at different times. Also I have a problem with muscle and joint pain partly as a side to my ataxia and because I am affected by fibromyalgia.
This all sounds bad, but I have meds to help and a usually positive attitude. :)
My father has just recently been told (after many years of problems and after doctors comparing his notes with mine) that he has cerbellar ataxia and he has related problems throughout the day that are much worse than mine but he keeps positive too (as best as he can).
It is all too easy for me to say 'Chin up' or 'Smile, it may never happen' or some other cliche designed (but not always taken) as a way to cheer someone up but I realise the upset this can cause. I do find that having a positive attitude whenever I can helps me get through the day though.
Best wishes to you all.
I hear you Donnybluewayne, as my confidence is low too. I've fallen (in my home) a couple of times since November, hairline fracturing my pelvis, and most recently, hitting my noggin on the corner of the wall. I'm sporting quite the "egg" on the back of my head. I'm fine though, although falling is not my idea of a good time...,ha! Maybe I should be using my cane inside my home also, something to seriously consider! Anyway, falling shakes ones confidence...,happens so fast! I'm very impressed that you still work...,good for you! And Michael, your positive attitude is admirable, especially with the frustrations and challenges of ataxia! ;o)
Hum... mornings are usually better for - they most definitely are for me. I streatch my legs & back a little before I get up and going!
David
Help me fund Ataxia research to fine a cure for F/A
As well as the usual synptoms…I tend to bend my neck too much. I also have a cathetér in ITU to help empty my bladder.waiting fora supra pubis catheter To be fitted . Any views on theśe matters? Also sleep with a ventilator.
I'd be interested to hear about plumbing probs as I have terrible trouble with 'going' very often and not being able 'to wait'
tks
dbw
joehamed said:
As well as the usual synptoms..I tend to bend my neck too much. I also have a cathetér in ITU to help empty my bladder.waiting fora supra pubis catheter To be fitted . Any views on theśe matters? Also sleep with a ventilator.
Have just developed plumbing problems prob due to change in exercise.Have difficulty balancing and worried about falling off the loo in an undignified manner.Cannot walk now but used to walk regularly hence the plumbing problems.Use a scooter to get out.Dog gets a lot of exercise and I just get fatter.Don't do much in the evenings as everything gets worse.
Muscle problems now. Think those may affect everything!!
I'm okay at home and if I sit down more of the time, when I'm in/out my car and up and down my probs begin, but I believe it is to do with core muscles