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Ataxia Support Network

Symptoms get harsher


#1

I guess nobody knows how quickly or slowly CA progresses. Nevertheless, I will ask. Though I look the same/ my walking. talking and typing seem slower Whereas, a few months or even weeks ago, no one noticed a big change, now its another story. Curbs and going down stairs are a big deal for me. Moreover I can tell in "small" ways that this marvelous disease is advancing. How? Last year I could make it up the stairs of my old Victorian, this year it's much harder.

At this rate, I will be immobile and mute next year. Talking has become a big issue. More and more, people say "what?" to me.

How fast does this advance? Does it ever stop or slow down? On top of everything. my spouse (a man) is totally unsupportive. Despicable as that is, his attitude does get me to re-focus. N


#2

I was having a big problem with stairs and curbs. I went to physical therapy, occupational therapy and speech therapy. I'm walking better (I used to fall 1-2 times a week, now it's about 1 time every 3 months). I'm walking down stairs almost normally. I still have some problems with curbs. In OT I found out my eyes were being affected. This was messing up my walking too. The therapies have changed my life.


#3

Hello my speaking is of in one mth,walking distance is bad wow really change, so fast


#4

Hi Neta.
Only you can tell if you feel like it’s getting worse.
I had a weird kind of week a while ago where most of my symptoms went. My speech, balance, energy, walking was great and I felt great. People were commenting on how well I was doing and for no reason I could explain. Then a couple of days later everything came back, I was mightily p****d I can tell you. I have days when my symptoms are worse for no reason, then others when I have loads of energy, better mobility, less falls etc, I guess we just have to take the good with the bad.
I went to the annual Ataxia U.K conference at the weekend and one of the neurologists said that if your symptoms change then you should see your G.P or neurologist as there could be an underlying cause so might be worth a visit you never know.
Take care Bev x


#5

Hi Neta ,


#6

Sorry , a slip there . didn't mean for that comment to go.

Walking , curbs & stairs . they are a big issue for me. This is how I cope . When with friends I will not talk or be close to any one while walking . I need to concentrate on steps . Stairs same goes but I am very cautious .

I am going through a period of rapid worsening , I hope and expect it slow back down soon . Be positive , it helps . Good Luck . Meme


#7

Thanks to all who responded to my query on worsening symptoms. Just saw these comments now. Heard that LWA's website is not working right.


#8

Curbs and stairs are the worse. I never could do stairs since the Ataxia, but now I have to find a wheelchair ramp to get into a store. Hope when I get in there they have one of those electric carts. If they don't guess I sit and wait for one to become available.