Slow but relentless progression of PLS

Hi, I just found this site today and am glad to have found you.

I was diagnosed with PLS in 1998. So, I have been living with it a long time.  It's been slow, but relentless. I can actually say, though, that my life is good since they initially thought I had pure ALS.  I went from the right side becoming weak, walked with "the" limp, tripped almost every step from drop foot, and then falling a lot. Fractured my pelvis at one point.  So, I then went to forearm crutches, AFO's, and falling a lot when I began losing my balance.  I am now in power wheelchair 24/7.  And now I think that wheels are pretty darn great.  I am kind bent like a pretzel now. My right side muscles in my back are so weakened that I can't sit straight. And this past year I've gone back to wearing an AFO on my right leg because there just isn't any ankle muscle left, so the ankle rolls and collapses when I try to transfer.

This past 2 years has seen the disease move to my left side moving from foot, to leg, to hip.

Well, I won't post so much today for my first post.  I will try to read and catch up with everyone here.

Thanks for reading.


David's picture

Hi Mrs70,

Welcome to the group!  To let you know, you should take a minute to say hi to everyone in the Welcome New Members forum.

Also, there's a PLS specific group, but it's not as often visited as the General ALS group.

mrs70's picture

Thanks David for the info on where to post. I was pretty confused about the site...Who, What, Where. But, hopefully I'll get the hang of it.

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