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olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,743
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
i am worried about my friend delb,a fellow pal.
he is in the final stages of bulbar onset als.
he has tried to carry on eating himself as long as possible and does not want a feeding tube,but now hes barely getting any food at all and from what i can tell he is very frail.
this past week or so he has had severe stomach pains and is being sick.
does anyone know if it is als/final stage related other than not getting any food into his body?
a nurse i going to see him tomorrow,but i am so worried.
i email every day,some days i feel sick and worry if he is late with his reply and fear the worse.
i mentioned yesterday to him if he had a feeding tube for most of his nutrition but could still eat a little if he wanted to.
i just dont know what to do anymore,any suggestions or advice would really be appreciated.
take care .
caroline:(
 
Hi Caroline. The stomach pain and being sick I don't think are ALS related so to speak. It could be related to not eating enough but the vomiting is out of character for not eating. Nothing in, nothing out is usually the way it goes. Good that the nurse will see him. He may have just picked up a bug. Hope he's better.

AL.
 
what i can tell he is very frail. this past week or so he has had severe stomach pains and is being sick. does anyone know if it is als/final stage related other than not getting any food into his body?caroline:(

I'm so sorry about your friend. I don't know about the final stage yet, except that I thought it was connected to breathing.

If he's not eating, however, and is in a state of semi-starvation, that could certainly explain his stomach pains and sickness, and be making all his symptoms worse. I hope he will consent to a feeding tube and is still strong enough for one.

How tragic.

Will be praying for your friend.
BethU
 
thankyou al and beth

it could be a bug or virus.
his nurse has said his body is starving,so it could be that effecting his stomach.
he is going to tell his nurse tomorrow he needs someone to prepare and blend some proper food for him,at the moment he just mainly has 2-3esures and yogurt a day.
the als has taken over all his body including speech and swollowing and no control of his neck so he needs to wear a coller.
the amazing thing is his breathing is good,but without his body getting proper nutrition i dont know how much longer it can last out.
i dont like to push the subject of a feeding tube,you have to respect peoples desicions on that kind of thing.
i do know the feeding tube did not go well when his mum had als 30yrs ago,but alot has changed since then in care.
we shall see what the nurse says tomorrow.
godbless you both.
take good care.
caroline:)
ps it is very late here beth but i will send you a pm tomorrow about your cats.
 
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sick

Caroline

Sorry about your friend being so sick and not eating.

When my husband was taking Rilutek he was so very ill and stopped eating and was sick every day.

He stopped the Rilutek and eats great now and is never sick, thank God. He also lost 15 pounds while on the Rilutek and the ALS clinic was very upset about the weight loss and took him off Rilutek.

He has gained back the 15 pounds and then some.

Thought this might be something if your friend is taking this med.
 
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