Arm weakness

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BarryG

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Hello everyone, as most of you know my problems have been mostly bulbar up until the last few months but I have been experiencing increasing arm weakness in the last month or so and an unusual symptom. When I go to do a feed I get ready with the syringe barrel in the peg tube and then when I go to pour the water in for a flush it is all I can do to lift the water bottle high enough to pour it into the syringe. The formula box is the same thing, it is all I can do to lift an 8oz tetrapack box to pour it.

Ok, so I am having arm problems but the strange thing is once I am done pouring the formula in and go to do the water bottle for a flush the water bottle is as light as a feather! It is not just that the bottle is a little lighter, everything feels lighter! I know that my metabolism has always made my energy level be really closely related to my food intake but this is ridiculous. I guess I just need to eat all the time. :shock::shock:
 

Miss

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Interesting! I'll start watching my husband to see if I notice an increase in strength after he eats.
 

GlenBrittle

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Barry,

You are weird.

Then again, so am I.

I have noticed the same symptom. Its like you have to wake up the muscles in my arms and shoulders, wait 5 minutes and then use them. For me, its noticeable when adjusting my butt in the pwc.

Glen
 

abbas child

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Barry and Glen... this is such a weird disease. For me to get enough strength to even sit up in the wheelchair, I have to drink water first thing in the morning. Waking up the muscles... a friend tells me I'm filling my cells with water, lol.

I can't get up in the morning before using the electrical power to raise my head... my head won't lift from the pillow some mornings at all until I'm more upright. The ability to have a few minutes to slowly move makes it a lot easier to help my caregiver get me out of bed.

Moan, moan, groan. smile. Barry, keep on feeding that metabolism!
 

Ladyinn

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Barry, I know what you mean. My left arm has been paralyzed from shoulder to wrist for a yeeear now, but the right arm is starting to lose strength. I can't lift a glass of icewater before or during a meal but after I have eaten I can!

Like Ann, I have trouble getting out of bed in the morning - torso muscles I suspect are also deteriorating.

I fell in the shower last night and needed help getting up - my arms couldn't hold me to push myself up! This morning I walked out to the deck and fell face down on the ramp -- legs didn't hold me up.

Makes me angry - and that makes things worse. Lots of naps are in order today! :)

Diane
 

rose

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.. so, maybe the "morning weakness" which I experience, and have asked about here previously, is not only related to having to get the enzymes going to the muscles by moving around (or whatever it is that happens after we've been at rest), its also a matter of metabolism, and eating boosts this?
 

abbas child

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Speaking only for myself, a glass of water is all it takes to help. However... any evidence that eating is good for us is fine by me! So far, though, I'm not stronger just after eating. In fact, the action of eating wipes me out. Once again, we may be different.

Ladyinn (as you and Rose share the same real name), I am hurting with you. Oh, I really am. Your poor face got it this time. Yes, it is exhausting to get angry... to be avoided if at all possible. Naps are good.
 

BarryG

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Thanks for the replies everyone. Maybe it is just the liquid that I need to get me going, I don't know but as I am totally tubular now it is all liquid. I notice this problem at all times of the day but it is worst for the first feed of the day. Oh well, if I have to get someone to pour my first feed I can live with that. Not the kind of jump start that I dream of but it will have to do!

Dianne, sorry about your shower and deck adventures. I know how it feels to be wobbly and to not have the arm strength to not only protect yourself while falling but to drag yourself back up again.

I agree, more naps. :smile:
 

joelc

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You guys are bringing back all kinds of past memories. It is hard to adjust to losing those abilities. I have adjusted to not being able to do anything but it took awhile. Nothing about this disease is easy! I sympathize with you!
 

BarryG

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Thanks Joel. Are you still eating real food or are you back on the PEG?
 

joelc

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On a good day I can still eat a little but my PEG is getting used again after having it for 3 years. The Vita-Mix will be getting a workout from now on. What a marvelous device! Thank Heavens for technology! I am using my NetBook for speech, ventilator for breathing, PEG for food, wheelchair to get around, lift for transfers, etc. etc. Life is good!
 

BarryG

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Good stuff Joel! When there is a will there is a way.
 

tomby

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Joel -ditto from me Life is good - your posts remind me
 

irismarie

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Hey, folk, the answer is THERE. just keep eating and drinking all day long. They DO say to keep our weight up:)
 

tomby

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No calorie is a bad calorie my doctor tells me
 
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