My hubby just was told he might have ALS Please help so scared

affected

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No that is a really strange one, ALS symptoms can worsen when very tired, but not come and go in that kind of time frame.
 

Nikki J

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Is it that he fatigues easily? Ok at the beginning but repetitive motion leads to the inability? for the towel issue. Hooded terry bathrobe put it on and rest while it dries him
 

MJT

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I am so sorry for what you are going through. I'll never forget a social worker telling us that "you'll get used to it" on the day my husband was diagnosed. Though that isn't exactly the case, there does come an incredible acceptance that I'd not have thought possible. Sending light and love to you and your husband.
 

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Nikki what is strange here, to me, is that 5 minutes later he is better again.
My Chris, while he could do things, for example would walk to the toilet, then back. Then he would be stuck sitting for hours before he would feel he could attempt even a standing transfer again.
Ability coming and going within minutes seems very odd.
 

Nikki J

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The short recovery time is unusual in ALS certainly. My recovery is longer than Gizzmo’s dh but shorter than Chris’s. I did discuss it with my neuro who said it is more common with things like MG but can occur in ALS
 

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If this applies.... early on I was told by my Neuro concerning muscles....
(That was for the muscles that hadn't failed yet.)

"Use them or lose them... sooner. But... don't over do them."

Well, it lasted for a while.... probably a longer while. If I do much now
I have to sit for about the same amount of time. For me what I have
lost has not come back. Gone.
 
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Nikki J

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the temporary loss in als probably needs some context. It is different than the primary loss of function that doesn’t get better. Those things PALS can rest for days and they still are impossible the things that we can still do take massive amounts of energy. like a regular person can run 10 miles maybe but would then need to recover before doing it again
 

Gizzmo

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When my husband tries to eat his hands shake so bad he cant get his fork up to his mouth. He can eat part of a sandwich and then has to rest. Does anyone have any idea what he can do to help his hands from shaking ? It's not real bad all the time but when he tries to eat it eats its bad. He gets so frustated and upset about it I totally understand his feelings but its sucks I dont know how to help him
 

Nikki J

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hard to say. Supporting his arm’s somehow w may help. There are special utensils and plates but those are more for dexterity issues though lighter utensils might help. Drinking with a straw so he doesn’t have to lift a cup of glass. Ultimately though you may have to help him. If this is ALS it is vital not to lose weight and also not to expend excessive energy on feeding so he can’t do anything else. This is true of a lot of other debilitating diseases too

where do you stand with diagnosis. I know he had scans to rule out cancer. What is the doctor saying now?
 

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He doesn't get to see his Neurologist till Dec 22 it is a long 3 month just waiting . Bought a table that would slide by his chair thinking that would help but not really. Eating snacks seems to be easier were he is not holding a utensils. Yes you are right about the straw what a great help. He feels that I shouldn't have to be doing things he should be. Told him we are a team we help each other. He took care of our family for 47 years let me and our boys help him
 

Nikki J

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Can you message them and ask for a sooner visit perhaps a televisit or at a minimum if there are any more tests that he needs in the interim? Also perhaps a visit with the occupational therapist?
 
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Gizzmo

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I will definitely try that. Thanks for the help kind of not thinking real straight these days so much to think of
 

Nikki J

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Let them know how much he is struggling. Even if he can’t get into the doctor sooner maybe as I said the ot? Or if they have an np? My clinic does and they can usually see people within a couple of weeks It is different because he isn’t diagnosed of course
 

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There are some atypical ALS forms that cause tremor. Does he have any issues with his eyes, speech, or swallowing?

Some of what you mention also resembles forms of periodic paralysis, though the onset is usually at earlier ages.

Regardless of what MCW comes up with, I would get a second opinion at somewhere like Northwestern.
 

Gizzmo

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He has a little strange feeling with swallowing no choking just kinda tight like stress feeling but not real often. His eyes are fine and speech is good. I will find another doctor for a second opinion. Is there a special doctor that I should be looking for besides a Neurologist for Als that is who he sees now ? I will ask about this Periodic paralysis I never heard of it but sure is worth a chance . Thanks for all your help. I just feel so lost :(:cry:
 
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