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OlgaS

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May 24, 2009
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Loved one DX
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or
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Beaverton
Hello All,
Had a question I was hoping someone would be able to answer for me.

Quick background :
My husband , 29, was officially diagnosed last year in August. Began the whole testing process the previous August.

My question : Does the rate of progression change through-out or does it stay the same ?

If I remember correctly and understood his doctor correctly she said that usually the rate you start at is how it will progress through-out the whole thing. From what she says he is progressing rather slowly (Thank God). He is still able to walk w/assistance of a walking, somewhat slurred speech (tends to get a little worse when anxious) but during a normal conversation very little slurring.

I'm just curious because the 1st year things seemed to go rather slowly, then for 3 months a lot of things happened quickly and now for the last 5 months I feel like things have pretty much stayed the same.
 
I don't think there is any way to accurately predict how ALS is going to progress. Many people experience periods of varying rates of progression. Sometimes it seems to giddy-up and go and then plateaus.
 
Yup.. got to agree with what Zaphoon said (and why wouldn't I!) Glen will go along for a couple months pretty steadily or even seeming to improve a little, then there will be a big drop over a couple of days or weeks. Doesn't seem to be any kind of why/when predictability. Also.. you'll learn the more you read here and elsewhere that it's practically impossible to predict how one person is going to progress based on what anyone else has done.
 
Most of the people I've talked to over the years have plateaus and then downhill slides and then plateau again. That's pretty much the way I've gone the last 6 years.

AL.
 
Well it has been over a year from my diagnosed... I think the first year the rate was slow... The last two months I'm afraid it has progressed faster. I am hoping for a plateau soon.... My Dr. said that everyone is different. My own feeling is that I have been slow and now it has picked up speed. Sad but true. Wishing a very slow progression... L
 
With me it has been a steady downhill slope with my bulbar progression since July of 2007. Now that the bulbar is about as far as it can go (I hope) my legs are starting, so I don't know about plateaus, I am hoping that my gentle slope doesn't turn into a cliff.
 
No cliffs for us just real slowwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww motion...lol
 
well I am HOPING it changes as so far it has been a downhill gallop. ten months ago I could walk and run and play. (Can still play. Must take films of me on wheelchair taking the ramp slopes.) so hpping for a slowdown but the medics do not help by piling on the stress of tests and constant journeyiing to get to thnem
 
Yes Iris, no galloping for you.woooooooooooooooooooooooo, stop that horse now! Hugs, l
 
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