Crazy Cat Lady's Husband

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crazycatlady417

New member
Joined
Jul 29, 2016
Messages
2
Reason
Loved one DX
Country
Uni
State
Ohio
City
Xenia
Hi, my, soon to be husband, was diagnosed with ALS in February. He was diagnosed after having neck surgery upon a follow up visit with the neurologist. So far the progression is slow, but his falls are getting more frequent. He is a gulf war veteran and also has ptsd and Parkinsons. Furthermore, he is a recovered addict (5 years clean) and has recently had 2 relapses. I think its because of the diagnoses but i dont know how to help him. I feel very helpless and i was hoping to get some advice here. Thank you, and im so sorry for all of you dealing with this disease.
Lisa
 
Hi CCL,

I've moved your post to its own thread!

At the top of the General Discussion forum you will find a bunch of 'what to do next' topics.
 
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CCL, the VA has big, serious medical and cash benefits for vets with ALS. See the sticky post at the top of our "Veterans and Military" subforum.

The PALS must not fall. It is very different from a healthy person's fall. A simple fall can cause lots of damage and even death for a PALS.

Marriage will change things legally, most likely giving you his VA and Social Security benefits when he passes.

The most fundamental way to help him is to just be there with him and keep him as happy as possible, moment to moment. Caregiving is very, very difficult, 24/7 when a person is paralyzed, so don't be surprised when you don't get much sleep.
 
Welcome Crazy--I'm glad that you found us. Mike has give some wonderful advice--access those VA benefits and try to convince him not to fall. Wow, your guy has a LOT going on. Is your local VA hospital responsive? Some are better than others, but for ALS the VA is generally the gold standard for care in this country.

I was surprised to learn that a fair number of PALS also have or develop Parkinson's. Mine has tremors that started before his diagnosis, but in conjunction with other early symptoms.

Ultimately, this is the PALS ride. You'll get a lot of good advice here (read some older threads if you have spare time), but keep in mind that he makes the final decisions. Support, try to protect, and love him, but don't feel responsible for his choices. That will help you retain your sanity.

Again, welcome. Please feel free to ask any specific questions, and be sure to print the sticky on VA benefits!

Becky
 
Thanks to both of you for your wisdom. I will do some more reading and go from there.
 
Important question Lisa: are you working with the Veterans Admin?

ALS is a 100% Service connected disease.

If you're not working with them FIRST THING MONDAY MORNING lookup your local Paralyzed Veterans of America (PVA) and tell them you have a vet husband diagnosed with ALS.
 
Lisa
As you can see there is so much important advice and information here, as well as care and compassion.

Please remember no question is a silly question.
 
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