Relative Diagnosed with ALS

[IAMTAT]

We received a call today that a relative was just diagnosed with ALS.
He's already in a wheelchair at 79 for back issues after a fall, but ALS was confirmed today.

I'm reading as much as I can on this now...and some of the stories are absolutely terrifying. 
This guy, an in-law, was athletic all his life and was an avid expert skier well into his 70's.

An accident which injured several vertebrae put him in a wheelchair for the past year...and he continued to get weaker and less mobile, physically.
His doctors finally tested for ALS and it was confirmed today.

Does anyone have any insight or experience with this?

Any information would be much appreciated.

Edit...I am reading about suspected connections between the covid vaccine and possible links to ALS.
I mention this as he and his wife were both champions of the vax and boosters...bragging about continuing to have received the full battery of boosters on a regular basis.

[Kwaka]

It does sound similar to Multiple Sclerosis, a disease that slowly breaks down the nervous system. People can still live for a long time, but do need increasing, ongoing support as they are no longer able to act independently and care for themselves.

No known cures at this time. Some medications might be able to delay progression of the disease?

I am aware of one case of MS since the covid vaccination rollout. Bells Palsy was one more common neurological effect from the vaccination, this condition does usually improve in time. It is hard to prove beyond reasonable doubt that MS / ALS is caused by the vaccination in the current regulatory environment. Neurological issues are on the suspect list along with increased cardiovascular issues and cancers.

I imagine it is going to be tough for a physically active, independant person to gradually lose their physical capability. If he does have some available support around, it can help give them purpose.

[Mantiss2021]

If your relative is a US veteran, the military will provide financial support to the veteran, and subsequently the veteran's  surviving spouse, for life.

My late step-father (USAF retired) was diagnosed with ALS and my mother receives compensation from the VA every month.

Also, contact the National ALS association for resources available. Very helpful group!

Good luck, and stay strong.


ETA: 

als.org

There is a link on the ALS home page for info on veterans and ALS.  The military has determined that, due to the fact that servicemenbers exhibit a higher incidence of ALS than non-servic members, veterans with at least 90 continuous days of service, diagnosed with ALS are eligible for compensation, medical and financial, for a "service-related injury".

[Tecate]

Unfortunately I know a fair bit about the disease as I have had a few patients with it, as well as a close buddy who died from it. My wife also has MS , so it hits close to home.

Essentially the neurons can’t pass impulses properly anymore due to destruction of the myelin sheath coating them. Kind of like the rubber coating around an extension cord.

It will get to the point where they are unable to move any of their muscles, until finally the diaphragm and intercostal muscles cannot contract anymore and breathing stops.

Very frustrating and heartbreaking.

I am sorry to hear about your In-law’s diagnosis. It’s quite a bitch of a disease.


Tecate

[IAMTAT]

Thank you for the very thoughtful replies.

He is a US Vietnam veteran...and I was surprised to read that 90% of those afflicted with ALS are vets.

[FlyersFan]

If your relative is a US veteran, the military will provide financial support to the veteran, and subsequently the veteran's  surviving spouse, for life.

... if they are retired from the military. 
Just being a veteran doesn't get you all that.   
Gotta' be in 20 years and retired.
(last I checked)

[Bootless]

Thank you for the very thoughtful replies.

He is a US Vietnam veteran...and I was surprised to read that 90% of those afflicted with ALS are vets.

Where did you read that? It's 90%-95% not genetic (family history related)

Here's what the VA ALS System of Care website says, dated Jan 2025

ALS and VeteransStudies have shown that U.S. Veterans are about 1.5 times more likely to get ALS compared to people who were never in the service. 

For that reason, ALS became a 100% service-connected condition for any Veteran with ALS who served longer than 90 days, received an honorable discharge, and was later diagnosed with ALS.

[Mantiss2021]

... if they are retired from the military. 
Just being a veteran doesn't get you all that.   
Gotta' be in 20 years and retired.
(last I checked)

Nope!


Eligibility for VA ALS benefits:

The VA presumes ALS is a service-connected disease. Once a veteran is diagnosed, they are presumed to meet the disability requirements.

The veteran must have served at least 90 continous days of active duty.

The veteran must have received a discharge under honorable conditions,  or conditions other than dishonorable.

The veteran must be diagnosed with ALS after their separation from the military.

The ALS cannot be due to the veteran's willful misconduct..


There is no required length of service to qualify, other than the minimum 90 days of continuous active service.

[FlyersFan]

There is no required length of service to qualify, other than the minimum 90 days of continuous active service.

Must be special just for ALS.
Everything else requires that you are retired from military after at least 20 years.
I'm a veteran with five years of service.
I get nothing.

[Avicula]

Where did you read that? It's 90%-95% not genetic (family history related)

Here's what the VA ALS System of Care website says, dated Jan 2025

Worth noting that firefighters are estimated to be 2x more likely to develop ALS than the general population, and are also far more likely to develop MS, Parkinson’s, and other neurodegenerative diseases

There IS also a correlation between familial history of ALS and subsequent diagnosis. 

I am double screwed! 25 years on the job and have had two uncles pass from ALS. I ran my department’s MDA fundraiser for 12 years and have had an opportunity to work with patients and neurologists who are trying to find a cure. It’s one of the few diseases I’m aware of that the majority of the research funding and effort is actually being put into finding a cure and not just a treatment.