Progression Changes

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karzy81

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Hi Everyone,

I guess I’m just grasping for straws here but when my dad was diagnosed with limb onset als he was progressing rather slowly. His breathing was great and he was still walking. Fast forward to the last three or four months and he has gotten drastically worse. He can’t move most of his body parts, his breathing is very laboured and you can barely hear him. He is still eating but it is difficult because of the breathing. He went in for a g tube but after a week in the hospital they decided he wasn’t a candidate because his colon was in the way. I guess I’m just wondering if the progression can taper off or does it continue like this once it speeds up.
 

affected

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Sorry to hear of dad's progression.
The only predictable thing about ALS is how unpredictable it is.
His progression may see to have been suddenly fast because a lot of muscles were slowly losing function and many hit a tipping point around the same time. Or his progression may be speeding up. It could get faster, slower or it could plateau but we just don't have any way to predict this, only ways to see what happened looking backwards.

Certainly if he is now eating and drinking less and has breathing issues, that could cause faster progression. Is he on bipap?
 

lgelb

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Hi karzy,

If his breathing is very labored, I would want to make sure his BiPAP settings are everything they can be (always happy to help) since as you know this disease doesn't stand still much.

If he wants to go on for a while, I would also consider a second opinion on the tube at a different facility, with interventional radiologists who are skilled at the many ways of placing a tube -- one technique does not fit all. This list of facilities is one place to start.

ALS tends to be fast/slow/fast but not always. It is still possible that his progression may slow down from its current speed, but I would help him live like it won't -- carpe diem.

Best,
Laurie
 
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My husband has progressed very fast in the last 2 months.I hate this disease.
 

karzy81

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There is nothing worse than this disease. He hates the bipap and it’s the only thing that makes him feel better. He never was anxious a day in his life until this disease came around. He can’t wear it without a double dose of Ativan and even then he hates it
 

karzy81

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My husband has progressed very fast in the last 2 months.I hate this disease.
I agree. Nothing is worse. He couldn’t have just gone and gotten cancer
 

Clearwater AL

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Yes, this is a horrible disease.

But.... cancer can be extremely painful with long drawn out painful and sickening treatments, painful
disfiguring operations and their caregivers so burdened too. In greater numbers... they don't survive.

Understand your frustration.
 

karzy81

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Yes, this is a horrible disease.

But.... cancer can be extremely painful with long drawn out painful and sickening treatments, painful
disfiguring operations and their caregivers so burdened too. In greater numbers... they don't survive.

Understand your frustration.
Yes that’s true and I’m probably being insensitive but at least they have a chance at surviving
 
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