Old 06-17-2017, 04:51 PM #1 (permalink)
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Default Very Aggressive ALS

My 70 year old brother in law went from having drop foot to being on a ventilator in about three months! He had been seeing doctors during the progression, but ALS wasn't diagnosed until late April. After three weeks in ICU, he was moved to an acute care
hospital where has spent two weeks while they unsuccessfully tried to wean him off ventilator. He was given a choice between Hospice, where they would make him comfortable and remove the vent, or long term care. He chose long term and was recently transferred to a nursing home for disabled people.
Needless to say, this disease is the cruelest thing to happen to
anyone. He can't eat, drink, talk,...He can think, see and hear and likely knows he will die in this hospital. My sister is tired from the past few months of watching him deteriorate so quickly. Now he has pain in one of his legs, which he never had before and had to wait untill it was time for his pain med.
Good Lord....I can't understand why he can't have as much as needed to help with pain.
The only positive in his story is that the VA is involved because he was a Vietnam Vet, but because this all happened so quickly, they haven't had time to approve his case yet.
I feel so helpless and sad for my sister and her daughters.
How does anyone cope with this disease?!!
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Old 06-17-2017, 05:34 PM #2 (permalink)
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Default Re: Very Aggressive ALS

So sorry to hear about your brother in law. Coping with this disease extremely difficult. One day at a time. There is no magic wand...

Glad that the VA is involved. I agree it seems crazy that he should have to wait for pain meds. I am sure their rules apply for everyone, regardless of dx.
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Old 06-17-2017, 07:19 PM #3 (permalink)
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Default Re: Very Aggressive ALS

So very sorry to hear of your brother-in-law's suffering. Your being there for your sister is no small thing. Just hanging in there with them and being there for them physically and emotionally will be a big blessing. Glad you found your way here for any questions or concerns.
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Old 06-17-2017, 07:36 PM #4 (permalink)
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Default Re: Very Aggressive ALS

I would *strongly* recommend that they contact the nearest PVA, Paralyzed Veterans of America, so thy can assist!

The VA is a typical bureaucracy but the PVA is well qualified to help.
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Old 06-17-2017, 08:37 PM #5 (permalink)
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Default Re: Very Aggressive ALS

I don't think my sister is aware of them, but I will certainly let her know ! Thanks!
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Old 06-17-2017, 08:38 PM #6 (permalink)
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Default Re: Very Aggressive ALS

Thank You. So difficult!
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Old 06-18-2017, 07:00 AM #7 (permalink)
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Default Re: Very Aggressive ALS

Yes get a PVA rep right away they can move mountains!
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Old 06-18-2017, 07:42 AM #8 (permalink)
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Default Re: Very Aggressive ALS

What Greg and Chally said re:PVA. They'd know how to get things going.
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Old 06-18-2017, 09:15 AM #9 (permalink)
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Default Re: Very Aggressive ALS

Not that another endorsement is needed, but I'll add one anyway. PVA staff are remarkably effective in cutting through the red tape.

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Old 06-20-2017, 03:23 PM #10 (permalink)
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Default Re: Very Aggressive ALS

Thanks for responses.
As it turned out, my sister had been in contact with
PVA and said the organization is fantastic!
My sister was just notified a couple of hours ago
that the VA will cover her husbands's care 100%!
Very happy to have heard that from her.
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als, brother, diagnosed, foot, hospice, nursing home, pain, progression, sad, story, ventilator


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