ALS and Veterans

[Shellback]

There are lots of veterans who participate here and lots of people who may not have served in the military but have military friends, family or acquaintances. Hopefully they don't have to go through any of this but in case they do I've tried to compile a list of reference material for those veterans who have been diagnosed with ALS.

All links are to official VA documents, press releases and fact sheets. Please feel free to add any additional information that pertains to the subject or that you think will be helpful in any way.

My father has been undergoing testing with several specialists for the past couple of months to try make a determination on what exactly's been happening to him. At this point, many things are pointing to ALS including muscle atrophy, tongue fasciculations, muscle twitching, pain, spinal issues, etc. and he's been deteriorating very rapidly over the past 3 or 4 months. His referral to the Mayo Clinic was just accepted by their team and he'll be traveling there this weekend in hopes that they can make a determination as to what's going on.

He was a CWO flying Hueys in the Army for about 8 years then moved on to a different Federal career where he retired a few years ago. Other than hearing loss from helicopters, which he didn't pursue as a disability, he is not currently classified as a disabled veteran and had no idea that ALS was linked to vets, neither did I until now. For reference, veterans are twice as likely to be diagnosed with ALS as the general population.

Currently, ALS is a presumptive condition for anyone having served for 90 or more continuous days in the United States military. With a diagnosis of ALS the veteran may apply for VA disability and will automatically be rated at 100% disabled, up from the previous 30% minimum rating. The change went into effect on Jan. 19, 2012, and was announced in the Federal Register Dec. 20, 2011. The current rate for a veteran with a spouse at a 100% rating is $3018 per month ($36k annually).

The veteran is also eligible to apply for SMC (Special Monthly Compensation) to help offset the costs associated with ALS. Depending on the stage of the disease and the progression the compensation can max out somewhere in the neighborhood of $8300 per month.

The veteran is also automatically eligible for the SHA (Special Housing Accommodation) which is approximately $68k and helps enable the veteran to retrofit or purchase a home that will accommodate their special needs.

An automobile grant ($19,500) is available as well so that the veteran may have transportation that will accommodate a wheelchair.

Other benefits may include CHAMPVA health insurance for their dependents and survivor's benefits (DIC), the base rate is currently $1215 per month, as well.

For help with applying and processing the claim I would highly suggest utilizing the free services of Paralyzed Veterans of America. PVA has really led the fight for ALS and knows all of the ins and outs concerning the disease and dealing with the VA. They can help the veteran in obtaining the maximum benefit that is due to the eligible veteran.

1. VA Press Release (2008) establishing ALS as a presumptive condition: http://www1.va.gov/opa/pressrel/pres...se.cfm?id=1583

2. VA Press Release (2014) making SHA automatic for vets with ALS: http://www.va.gov/opa/pressrel/pressrelease.cfm?id=2530

3. VA Disability Benefit Questionnaire (DBQ): http://www.vba.va.gov/pubs/forms/VBA-21-0960C-2-ARE.pdf

*Posted on TPI as well to reach a broader audience.

[HCM]

I am sorry to hear about your dad. Wish him the best.

Do they provide any information regarding why Vets are twice as likely to develop ALS ?

[Totem Polar]

I'm very sorry to hear about the likely diagnosis. Mayo is the best at this: my MIL was diagnosed with ALS at Mayo. Also curious as to why the uptick with vets?

[HCM]

We have a member here ( nephrology) who is a researcher at Mayo. He hasn't posted in some time but you might try reaching out to him.

[Drang]

That's good info, thanks. (Sure hope it doesn't come in handy.)

Hope things work out for your dad.

[Shellback]

Do they provide any information regarding why Vets are twice as likely to develop ALS ?

Nothing definitive that I've read yet. My uneducated guess would be environmental factors like virus vaccinations that everyone gets in boot camp. Bad news is Persian Gulf vets are even more likely to get ALS, and at an earlier age.

Thank you everyone for the well wishes. After researching all of this stuff I figured it'd be a waste if I didn't try to pass it along to others who may find themselves in a similar situation.

[Mike C]

I am very sorry to hear about your fathers condition. I wish you and your father all the best. Thank you for doing your best to pass along what information you can to help others, it gives me hope for this country when I see people thinking of others even when they themselves are dealing with a hardship. God Bless your father and family.

[Chuck Haggard]

Well, now I'm worried a bit.

[Shellback]

The ALS Association published a white paper last year and I highly recommend reading it if you're at all interested in the subject. ALS IN THE MILITARY UNEXPECTED CONSEQUENCES OF MILITARY SERVICE February 4, 2013

- Two separate studies were conducted in response to reports that ALS was occurring in Gulf War veterans at an unexpected rate, particularly in young veterans who were not yet of the age at which ALS is more common. The two studies used different methods to examine the issue, yet they produced similar conclusions: That Gulf War veterans were approximately twice as likely to develop ALS as veterans who had not served in the Gulf.

- Studies published in 2005 and 2009 found that men with any history of military service in the last century are at a nearly 60% greater risk of ALS than men who did not serve in the military. Conducted by epidemiologists at Harvard University’s School of Public Health, the studies concluded that “Military personnel have an increased risk of ALS. This increase appeared to be largely independent of the branch of service and the time period served.”

[Shellback]

As it stands right now, from what I've read, I believe the best treatment for ALS is in stem cells. Mayo Clinic and Emory University are really riding the cutting edge in terms of treatment. 2 articles that I found to be very informative about ALS and it's treatment, not specific to veterans.

New Cells for ALS Patients By Susan Young, MIT Technology Review

Everyone deserves the right to try: Empowering the terminally ill to take control of their treatment.