I was thinking about how far ataxia progresses, I wake each day to a little more problem walking, talking, and worsening dexterity. I wonder how bad does it get. I have ataxia for about 5 yrs and I am 81. will it come to the point of not being able to stand or swallow or even eat. I really wonder. Jerry
Don't think any of us know!..I don't worry too much thou,b/c so grateful for what I have that still worx,lol..
Take care..I'm 20 years younger and children with Ataxia saddens me,,,greatly! A damn cure twould be nice..
Hi Jerry, how are you today:-)
It would be great wouldn’t it if you just knew you’d wake up tomorrow and be able to spring out of bed (I know you’re 81)and have a productive day 
It really would be something to look forward to
This is a distant memory for me too, though I still fantasize about it happening
It used to be a constant pressure on my mind, how quickly will this progress and just how degenerative will it become?
Eventually I realised that all this deep thinking wasn’t getting me anywhere, if anything it was holding me back:-)
It is what it is, be kind to yourself, go with the flow.
Cerebellar Ataxia can be erratic, symptoms can come and go, onset can be immediately severe, or it can creep on over a period of time.
You are not alone dealing with this, well perhaps you live alone but at least on here you’re among friends:-)
I imagine most people can see progression more apparent at some point. My memory is becoming worse, I find myself making lots of notes and half the time when I look back, I can’t read my writing! Some words can be in print, mixed up capital and lower case, often letters missed out altogether!
On good days I try to make the most of it and enjoy something I can rarely do. Other days I generally zone out until my energy picks up:-)xB
Ataxia is... incurable, gives you whatever symptoms it wants and progresses at whatever rate it wants.
I've also dealt with this question, as I'm in my 20s. I've decided to try to ignore it as best I can and do everything possible to remain as healthy as possible for as long as I can. I'm going to go after my dreams, and if I fail because of ataxia, then at least I've tried. I think the best thing we can do is to not let this disease dictate our lives. I like to think in kind of black and white: if I let this disease control what I do to the point where I stop doing everything i love, then what's the point of living? So because I'm not going to die anytime soon, I'm going to live my life to the fullest and say screw ataxia!
What you have said is brilliant. We should all take a leaf from your book and take on your wonderfully positive attitude and say rude words to Ataxia!!
Whether people suffer from a chronic illness or not, we should all be living life to the full, and trying to be as healthy as possible to help ourselves. Good for you!
runner said:
I've also dealt with this question, as I'm in my 20s. I've decided to try to ignore it as best I can and do everything possible to remain as healthy as possible for as long as I can. I'm going to go after my dreams, and if I fail because of ataxia, then at least I've tried. I think the best thing we can do is to not let this disease dictate our lives. I like to think in kind of black and white: if I let this disease control what I do to the point where I stop doing everything i love, then what's the point of living? So because I'm not going to die anytime soon, I'm going to live my life to the fullest and say screw ataxia!
its nice to say the hell with ataxia but I really would like to know so I can plan ahead for what to do when I cant handle incontinence or cook or do all the necessary things I see sneaking up on me, we cannot all depend on family because they may not be there for one reason or another.
The only person who could remotely answer that is your neurologist, and even s/he probably won't be able to give you a clear prognosis because nobody really knows. It's different for each of us. That's why I think the best thing to do is to exercise and eat well because those things can only help. If you're trying to plan for your future in case you can't take care of yourself, maybe ask your doctor if he has any advice. I'm sure they've seen patients in the past who have needed assistance (who don't have family they can depend on) so s/he may be able to direct you to resources. There are always home assistance nurses/helpers and a whole host of living centers for people who need a little extra help. These range from full blown nursing homes to independent living style apartments but with staff on call to help you if and when you need it. Maybe the best thing is to start looking into those now so if the time does come, you have a plan of what to do.
You mentioned incontinence. Have you seen a urologist? Sometimes they can do things (procedures, or just living tips) that can dramatically help.
gelu65 said:
its nice to say the hell with ataxia but I really would like to know so I can plan ahead for what to do when I cant handle incontinence or cook or do all the necessary things I see sneaking up on me, we cannot all depend on family because they may not be there for one reason or another.
I am answering your post to your ataxia questions from having it myself. I understand ataxia will progressively worsen until you are over taken by the complication you suffer behind ataxia symptoms. Yes it appears to worsen on a daily bases but that is a perception you can conclude from having your version of ataxia. You don't want to know your end to ataxia because it is awful to know. I had ataxia and had it for for or more years. I retired from military service and work at 38 and now I am 41 years of age. Yes, it will come to those points you made or even worse if you don't exercise, or sit up will you sleep during your none swallowing episodes, and eating better so that you do not have more illnesses being obese. So your next write up will be more positive for younger people like myself and can have a more hope full attitude from our more senior people.
Every person's progression is different. You have the added complication that there are plenty of 81-year olds who don't have ataxia who could write "I wake each day to a little more problem walking, talking, and worsening dexterity" - of course there are also some fit and vigorous 81-year olds, but I'd say they're in the minority.
How bad does it get? It can get to the point where you can't walk, can't swallow lumpy food without choking, can't talk in a way where anyone can understand you, can't pick anything up.
It can get that bad, but with a combination of luck and exertion from you, it doesn't have to get that bad. Are you being seen by a physio or occupational therapist who knows about ataxia? The fact you've got to 81 suggests you may have a slow-progressing version of ataxia, so you've got that on your side. Good luck!
Every case is different so impossible to say,
I have been dealing with this disease for 27 years…since long before it was given a name. I thank the Good Lord for my healthy body…for aside from ataxia, I have no chronic ailments, take no medication…I don’t worry about the progression of this disease, though it seems to be speeding up.
Every day I pray for a healing, and all my faith is in God. He is the Only One Who heals…doctors TREAT…they do not, cannot heal. That being said, neither do I worry about my health. I have learned that worry never changes the outcome of anything. Worry burdens our minds and bodies with its heavy weight…and all for nought.
Give your worries to God and find something to smile about! A better frame of mind can make your problems seem lighter !
God Bless
Gelu65
To answer your question about wanting to plan ahead, you do not need to know how and when your condition will deteriorate. I like to plan for the worst and hope for the best.
This way if you become unable to take care of yourself, whoever will take care of you will know what to do.
This applies to all matters of life (health, finances etc…) it is not pessimism , it is realism… It is called always being ready for any eventuality.
Discuss your situation with your family (or close friends, if you are on your own). Also, there are senior citizens organizations which offer advice. It will give you peace of mind.
Best wishes,
Cicina
I watched my grandmother and mother live with their Ataxia, but I still don't know exactly what will happen for me, because it plays out differently for everyone.
I am so sorry I have nothing to add. The unique perspectives of members must now buoy me. Why? I seem to get worse. In April, my 63 yr old twin brother died of colorectal Cancer two mos. after Dx and a week after his 2nd chemo. I have NEVER hated ataxia more, as I’m now in a w/c and couldn’t physically get up to NH (from FL) in the 24 hrs he was bleeding out to hug him goodbye. I swim, meditate, get grief therapy, and take Xanex to sleep. My despair far outweighs my hideous Ataxia (etc.) and my life-long brain battles. My only contribution today is to hug debilitated pple-even those you don’t know in Nsg homes and anyone alone. Everyone has a difficult and/or sad story. “God Bless Us All.”
Dear General, There are so many great responses here, it's difficult for me to add anything! I'm 61 years young (62 in February) and was diagnosed with Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7) eleven years ago, although I had very minor symptoms starting about eight years before diagnosis. Although my ataxia has progressed over the years, I'm thankful for what I can still do! I exercise for strength and balance and eat as healthy as I can, which helps. Non of us have a crystal ball to know how quickly or slowly our ataxia will progress. We just need to make the best of each day and be as active, safely, as possible. It's difficult not to worry about the future, but no one, even those without ataxia, know what may happen! My best to you..,;o)
My youngest son who is 4 has Ataxia(CAMTA1) and he is progressing it is awful to see he is 1/15 with this form on record. My grandmother died at 72 of Ataxia unknown kind and my mother and I have early symptoms.