Progression

[Carolss]

I'd like to hear about the progression of ur symptoms..what they r and how long till they were seriously limiting ur life.

[auntiesally]

5 years, mobility mainly,

[Veteran250 in reply to auntiesally]

2003 walking with wide gait, 2005 with walking stick, 2006 electric scooter....but life goes on.....

[cocoa in reply to Veteran250]

We are all different … I have late onset idiopathic cerebellar ataxia and it is progressing slowly.

My mother also had the same symptoms although we do not have a firm diagnosis. She lived to the grand age of 101.

[robo1 in reply to cocoa]

wow!!

[ddmagee1]

Hi, my Cerebellar Ataxia diagnosis, is due to arterial compression at the Cerebellar Pontine angle, in the brain, which compresses nerve roots. It is very rare to have that, and is not the same as a disease process. That being said, because of the nature of age and arteries, symptoms have gotten slowly worse. It is an inoperable condition. Compound that with my diagnosis of Parkinson's Disease, which, for me, is progressing. I'm in Stage 3 of that. The good news is that I'm still fairly mobile and around, at 72. Occasionally, I use a three pronged cane. I walk some, but not any long distance, and I don't ever recall having very good balance. I couldn't walk a straight line, if my life depended upon it. I exercise, range of motion exercises, and follow, usually, a Mediterranean diet. I concentrate on what I can do, and don't bemoan the things that are hard to do, or that I can't do. Good luck in your Ataxia journey, and may you each day, challenge yourself to make it a good day, in spite of chronic health issues, like I do! It works for me. Take care, and please don't waste a lot of precious time worrying. Reach out, and enjoy life, as best you can.

[Pheobe13]

My partner is at the stage doesn’t walk can’t talk properly has tremors has soft diet because of swallow thickner in his drink just in case he chokes confused umm doesn’t want this awful disease to go on basically

[ConfusedAtaxian]

3 years, Carolss.

[Susie1972]

You sound very anxious all the time bless. Everyone is different, I have just started intense neuro physio again and am so positive as I have a fab physio now and cant wait go back this Monday! Between my hard work and her pushing me we have a plan in action to get me off my crutches! Believe or curl up in a ball.... I choose not too do the latter, I have an 11 yr old son on my own👍How bad are your symptoms Carolss?

[Carolss in reply to Susie1972]

I have recently been diagnosed. Cerabellar ataxia

syptoms

. Wide gait..falling and stumbling..swallow

difficilties..weird leg stuff like walking backwards..walking so fast I walked into a garage door..

Depression..sometimes legs dont work and I cant get out of chair.. if there is no o ne to help I just sit for hrs until I can stagger..or I just sleep wherever I am. I also have cognitive decline. And probably other hings I dont remember. Have been in the emergy room 5x in a year

When I feel ok I pretent it's all better...until..............

[Susie1972 in reply to Carolss]

I cant walk backwards jump or dance, walk downhill have a wide gait and walk with extended knees which is very painful (my physio is compiling a plan to try and reverse the extended knee)I have accepted all these now but am gonna give 110 per cent in the gym at physiotherapy. Thankfully my speech, swallowing and my arms are not affected. It took 2.5 years of tests to diagnose me 6 months ago. I take baclofen and gabapentin to sleep all nt and 2 co-codamol in a morning with voltarol on my knees.

Chin up

[Sharontower]

Balance non existent. Speech getting more slurred Always using wheelchair. However we are going on our fourth cruise in four years after never having a holiday in 25 years.

[Bobby1124]

Less than a year only I cannot walk and on a whellchair.

[coat2003]

only a spring chicken at this ataxia lark, cannot really comment but one thing is for sure, last winter, better said in March, as a result of a different programme (sugar mainly from the blood sample, showed lack of vit. D. Took a strong course of medicated vit. D, rechecked in September 2018 and it was fine...Don't feel as lacking it now, just in case, but will check it...out. Cold in any form, a season of winter...thank god a very efficient boiler that works well...can cause me rigidity and being generally cold, is a main no no…

it is much harder to comment on other issues, as my progression is there, but NOT so significant, at least it doesn't feel like it, I could make valuable comments.

One thing I am certainly working on, to be able to spend half a year (our winters) in somewhere like Portugal...