Old 11-05-2015, 06:36 PM #1 (permalink)
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Default Wondering How Others Feel Weakness

Looking back over the year since I've been diagnosed. I've noticed gradual weakness in certain parts of my body. Since I use my legs the most, that is what is most noticeable to me. I feel fortunate that I'm probably a slow progressor. But, what I've learned here is that we can speed up and slow down during progression. For instance, my FVC went from 86 to 56 during the first year, my grip is weaker, and my arms can't lift heavy objects.

What I was wondering is this. Do we feel weakness the same? For instance, I've noticed that when I walk 20 feet, my legs feel like I've walked up 10 flights of stairs. (The first couple of feet or steps feel semi normal). Not necessarily weak, but tired? Exhausted? Fatigued? Is this weakness?
Is this similar to what others feel? Or, is it a different feeling.
I know everyone is different. But who better to ask?
Thanks in advance,
Marty
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Old 11-05-2015, 07:29 PM #2 (permalink)
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Default Re: Wondering How Others Feel Weakness

An example of how Chris felt weakness as his hands went.

He could hold a knife easily.
The knife would drop suddenly when in use.
He was unsteady with a knife - couldn't direct to where he wanted.
He couldn't put pressure on the knife to make it cut.
He had trouble getting hold of the knife to pick it up.
He couldn't hold a knife at all.

I would imagine that is a pretty standard description above.
What varies is the time it takes to go from normal, to completely unable.
For Chris that was a few months.

He never found his hands felt any different they just stopped working.
But obviously as he tried from line 2 onwards he found it increasingly fatiguing because a very simple task was taking a huge amount of effort. By the end it would take him close to 30 minutes to eat a puree meal with spoon - so of course he was exhausted.

The tiredness is not weakness - weakness can be measured in the ability to perform a task.

Hope that helps



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Old 11-05-2015, 07:30 PM #3 (permalink)
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Default Re: Wondering How Others Feel Weakness

Steve says his legs feel heavy but jello like. He can't count on them when they feel like this. They quiver, shake, cramp, and have more fascics too. Mostly shake and quiver.
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Old 11-05-2015, 07:34 PM #4 (permalink)
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Default Re: Wondering How Others Feel Weakness

Chris's arms didn't start to feel heavy until he was unable to raise them past his chest.
Because the muscles were not able to lift his arms, he could feel the full weight of them.

They no longer felt heavy once he couldn't move them.

But a heavy feeling in the arms was not an early sign that they were becoming weak, it was a later thing.

The early signs were that he just couldn't do things he could before - say lift his arms above his shoulders to hang clothes on a line. (yeah you guys don't do that solar drying thing I know lol)
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Old 11-05-2015, 07:37 PM #5 (permalink)
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Default Re: Wondering How Others Feel Weakness

Interesting Tillie about the hands. Steve was fully functional but would have spasms in his hands a year ago. Now we are using the big utensils from ot, I cut his food, and he is having a swallow test Monday because they think he is starting to aspirate foods/liquids. For steve, I think because of his breathing, anything he does is fatiguing. They say he has good strength still but other than his belly his upper body in particular is very boney. He can't lift anything, struggles to stand, can't drink from.a.regular glass. No buttons, snaps, or the like. Writing is unrneadable. He can't grip a pen properly to write and he has lost the fine motor skills.
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Old 11-05-2015, 09:58 PM #6 (permalink)
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Default Re: Wondering How Others Feel Weakness

With me there's no sensation, or weird feeling, the muscle just isn't there. I go to take a step and as soon as my heel touches the floor my fore foot slaps down on the floor. With some modification in my gait and walking slower it wasn't an issue. The constant slapping noise is annoying. Running was very awkward. Through the 2 years of being diagnosed i was asked repeatedly if I had pain, numbness,burning or tingling to the point of distraction. There is no sensation I've noticed but I am constantly tired. Hope that helps.
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Old 11-05-2015, 10:22 PM #7 (permalink)
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Default Re: Wondering How Others Feel Weakness

Quote:
Originally Posted by Vincent View Post
i was asked repeatedly if I had pain, numbness,burning or tingling to the point of distraction. There is no sensation I've noticed but I am constantly tired.
Same for Chris - no sensations at all.

The fatigue only came when he was trying to push himself - eg half an hour to eat is too long.

Gooseberry Chris lost fine motor first too. It depends which muscles are dying as to exactly what activities become hard first.

Chris couldn't pick up a pillow but he would taken hold of the brush cutter and spend hours straight using it. Once he got it gripped in his hands he could use his arms. Mind you, he would do way too much and his arms would visibly waste over the next couple of days and he would be hardly able to do anything at all. Overuse will hasten progression.
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Old 11-06-2015, 04:38 AM #8 (permalink)
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Default Re: Wondering How Others Feel Weakness

Wow almost shocking, but I am just starting to notice (for the past 7 months) that I can't go as fast as far walking, I can't lift (one handed) things I had before, no problem God gave me 2 hands works for now. I have problems with chocking but only once a day. I don't have the lungs needed for the marathon, but I don't do that, I am beat after a climb the stairs but I climb the stairs, and I will climb the stairs as long as God gives me the strength to do that. I have noticed a slight lose of motor control but I am not worried about this disease, it will kill me but so what. I am on a mission for which I will not return, I don't fear death it is not contagious neither is ALS.

Just finished reading "Tuesdays with Morrie", I suggest it to all PALS, it will show you what it's all about, it was stated we can go out kicking and swearing, or peacefully, why make enemies, I will go peacefully God willing.
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Old 11-06-2015, 12:07 PM #9 (permalink)
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Default Re: Wondering How Others Feel Weakness

Marty - that's sorta what my legs feel like. I can't walk very fast or very far - sometimes a block, sometimes less. Its like lifting weights and then you just can't lift one more time. Thighs feel like lead. I guess that's a weakness. But if I stop & rest for a minute I can continue walking for a bit. My gait varies - sometimes its closer to normal - sometimes its just all over the place. My left side is weaker (both arm & hand & legs) than my right. My biggest problem is breathing.
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Old 11-06-2015, 02:32 PM #10 (permalink)
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Default Re: Wondering How Others Feel Weakness

Thanks for all the responses. This must be the feeling we get prior to the loss of the muscle. That's actually what I was wondering. It sounds like it just gets worse till it's not there anymore. Do you think this is how it is?
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Old 11-06-2015, 02:39 PM #11 (permalink)
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Default Re: Wondering How Others Feel Weakness

I think so for Steve. His legs are almost gone. He uses his pwc for most things but uses his walker at home for the restroom. His feet did slap when he walked, now he can't pick them up, he just shuffles a bit.
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Old 11-08-2015, 11:07 AM #12 (permalink)
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Default Re: Wondering How Others Feel Weakness

yea i am tired all the time now ! getting dressed even w/help putting braces on, eatting and even social talking all wear me out but that's ok i must remember to choice what i want to wear out on. Morrie is a great read! i am right there w/steve gooseberry. love ya all chally
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Old 11-08-2015, 02:58 PM #13 (permalink)
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Default Re: Wondering How Others Feel Weakness

The distance I walk has decreased. Even when I first get up and my feet touch the floor, they (especially the left one) feel like they are landing on jello. They also hurt sometimes. I've lost a whole shoe size and my feet look much different than even six months ago. My toes are curled in.

I can still walk up one flight of stairs but it feels like I've walked up 20. My legs burn and ache after I climb stairs. I get cramps in my glutes, thighs, calves and feet and it increases with the amount of work I make them do.

I cannot control a mouse or type as easily as I did in the past. This is the fine motor skills. My hands and legs shake.

I also have one very odd sensation and all I can describe it is sciatica without the pain. My left side of my butt, back of the left leg, calf, and foot have a tingling sensation like the sciatic nerve has been irritated. If I touch my calf, I can feel it in my feet.....the sensation travels down. Sometimes I get pain in my butt or back leg, but not often. This is only on my bad side (left.) Sometimes I can see the twitches and also feel the tingling. My neuro said this could be from loss of muscle/fat covering the nerve in my butt, sitting too much or any other number of things. It still seems strange to me since this is supposed to be a motor disease, not a sensory one.

Lately, my left foot wants to slap the ground when I have certain shoes on or am barefoot. If I pay attention to my gait, I can still control it. My ankle is getting much weaker.

I hate that I keep self-testing my strength
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Old 11-08-2015, 04:50 PM #14 (permalink)
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Default Re: Wondering How Others Feel Weakness

It varies for me, sometimes I "feel weak" but when I go to do things I'm not as weak as I feel, other times I feel strong but am actually weaker... In general the more I do up to a point the better I do and the stronger I feel. The worst for me is to do nothing for 2 or 3 days, I get stiff and feel weaker.
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Old 11-08-2015, 05:15 PM #15 (permalink)
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Default Re: Wondering How Others Feel Weakness

How different we all are! Kim, I've gained one or two shoe sizes. My feet, essentially paralyzed now, have lengthened, and are so swollen I can't fit them into shoes, even with compression stockings on. (Managed to find shoes with stretch cloth.) I have been wheelchair bound for almost 6 months, can't walk even one step, but my hands work fine. Since my speech and breathing have been declining, I become tired when I exert myself, trying to talk. While I love social events, they tire me out. I go to bed early and take two naps a day. Can't get in or out of bed on my own anymore. Feeling weaker as time goes on.
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