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dank

New member
Joined
Jul 5, 2011
Messages
9
Reason
DX UMND/PLS
Diagnosis
07/2011
Country
US
State
Massachusetts
City
Quincy
Hi all......

Since my original PLS diagnosis about a month ago I've been trying to do daily stretching to keep my flexibility from getting worse (and possibly get better too). I had not really done much with my arms as this is affecting my legs more than anything. Last weekend I did a lot of stretching for my arms, and this week I am really paying for it. My arms had previously not really bothered me at all, but this week they have felt extremely fatigured (I've actually taken a few days off from stretching). I work at a computer and by the end of the day they are very, very tired......though they seem to feel better later at night after not using the computer for a while.

Is this an experience that seems in line with what others have gone through? Any recommendations? More stretching, less stretching, etc?

Thanks...and hope this finds everyone feeling well!
Dan
 
Dan, if I overdo my exercise, then I pay for it with a couple of days with fatigue as well. I still exercise as much as possible, but have learnt to build up slowly and never push too hard. There seems to be a very fine line, that takes a while to discover. So keep stretching, but back up a little. Start slow and listen to your body.

I have good arm strength as long as the movement is not sustained, so hanging out washing is tiring, where swimming is ok. Weird. The hardest thing of all is holding a cane when walking, but I can throw a 20 kg bag of dog food around.
 
Thanks for the reply....seems like we're in the same boat. I also have no trouble when swimming or a lot of other things (holding my 2 year old for example), but it seems like the stretching I was doing really took something out of me. I'm also glad to hear that it's not necessarily "everything" as that seems to be my experience as well.

As I said, I was only diagnosed about 5 weeks ago, and only began stretching (and listening to my body) around then, so as you say I am sure it will just be a case of figuring out what works and what doesn't and adapting accordingly.

I was getting a little nervous that this was just a case of things progressing very rapidly all of a sudden, which was very scary.
 
I felt like that last year. Watched everything I did, and saw progression constantly. I finally figured that the more anxious I was, the more I imagined every little thing as progression. I have worked on my fitness and am falling less often, walking a little better now I have adjusted to my new way of walking, but going up inclines is steadily getting worse....slow for sure, but progressing.

I am in a relaxed place now and barely think about the pls unless I am out and about,you will find that with a certain amount of acceptance, cones a place of peace. If that makes sense.

Welcome to the forum Dan.
 
danko....keep doing a bit...dont use it, u lose it..no pain no gain....manage it.....or go downhill faster...loves the pooler...
 
Hi Dan and Welcome! I'm pretty new to this too. My PT suggested I get a stationary recumbent bike to help strengthen my legs and also give me a cardio workout. So I bought one. Just 2 days into it now. I've gone for 20 minutes at a pretty moderate pace. I was trying to use my treadmill from time to time, but my PT was afraid I might fall off of it. I'm excited to get in the bike routine. I haven't been working my arms which I really should do too. I've also been doing some great stretches - not every day, but working on it. I'll see how I feel as I move on. Also, have decreased (weaning off) baclofen as it didn't seem to do much except make me feel tired and medicated.

Many blessings to you and all others here.

Lou Lou
 
arms fatigued all the time,can only hold them up for no longer than a minute at most.
can no longer swim do to weakness being too bad from waist down plus arms got fatigued after a couple of strokes.
..............soon be needing a visit to the vets.
 
It is good to keep in mind that we subconciously choose things to do and ways to do them that are easier for us. So perceptually when we start a new exercise is seems we've gone from being perfectly fine and competent (our normal stuff) to weak and uh oh (the new thing/way). This even happens with bulbar symptoms. A person with UMN voice strangling can actually sound pretty good for a while if they're just talking. They don't think about it, but they avoid words that are hard, space sentences to their tolerances, etc. But listen to the same person try to read aloud - the wrong word selections, objective timing, etc, and they sound like they just got 10 times worse!
 
Hi Dan,

This is a problem that I experience from time to time. I cannot say for sure if it's related to my diagnosis of PLS, but there are times when I will find my arms so fatigued that I can barely lift them. This happens from time to time when I'm in the shower - I am literally unable to dry myself off - and become short of breath (not due to cardiac reasons - that stuff has been ruled out recently) but due to over-exertion. I used to lift weights, and the fatigue I get in my arms is exactly like the fatigue you have after you've lifted 5 sets of arms curls -- and then try to dry yourself off with a towel!

I honestly don't know whether there is a relationship to my PLS, however....and my neuro never said ('cuz he doesn't know either)... :)

Well wishes,

Mike
 
For me it is not so much a difference in arm strength, but in flexibility and speed between my two hands. This is pretty recent. My right hand works fine. I can flicker my fingers quite rapidly. My left, however, is a bit slower and stiffer.

I also noticed that when I yawn my entire left arm and hand go very hyper spastic. I assume that this is progression, but it may also be over use since I use my left arm and hand to center clay on the potter's wheel. Who knows? With no cure in sight, I just plod along and do the things that I enjoy. I do need to be hitting my road bike on the trainer and the hand weights again....yes; sometimes easiest is not best. I have been lazy lately.

- Jerry
 
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