Old 03-14-2017, 12:44 PM #1 (permalink)
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Slow but relentless progression of PLS
Submitted by mrs70 on Fri, 03/10/2017 - 15:26

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. 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.
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Old 03-14-2017, 01:44 PM #2 (permalink)
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Welcome mrs70, hope to hear more from you. This is a great site, you will find lots of comfort and friends here.
Al
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Old 03-14-2017, 10:48 PM #3 (permalink)
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Default Re: mrs70

Welcome, Youngstown. With your long experience of PLS, I am sure your insights will be helpful to many here who have less time in.

You mention that your body is twisted -- are you comfortable in your wheelchair? There are postural supports to help if not.

Best,
Laurie
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Old 03-16-2017, 01:13 PM #4 (permalink)
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Thanks, lgelb, for the suggestion for posture supports. I'll look into it.
Yes, it is hard to sit very long in my chair. I use cushions to try to set my back straight, but just pushing the weak side to correct position gets painful. So, I try to get out of the chair as often as I can. I like to lay down on my living room floor, which is nice and hard. I also turn on the gas logs and feel the pain being "sucked" out by the heat. Of course, then there is the long hard trip to get back into the chair.
But then everyone has their trials, so I can't complain.

Thanks for the welcomes and replies.
Maggie
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Old 03-16-2017, 11:13 PM #5 (permalink)
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Welcome Maggie. My husband was diagnosed with PLS 13 yrs ago. He is awaiting hi power chair and has problems with spasticity, speech and swallowing. He also fell and broke his hip. That was 4 years ago. I could picture on the floor enjoying the fire but I bet it is an effort to get back to your chair.
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Old 03-17-2017, 07:50 AM #6 (permalink)
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A very warm welcome to you, Maggie.
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