Als - Reference Thread

[K9MAL]

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. Veterans are twice as likely to be diagnosed with ALS as the general population.

I've compiled a list of reference material for those veterans who have been diagnosed with ALS so that they're not having to search through multiple sites and tons of material on the internet. 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.

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, 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/pressrelease.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

[Berta]

Britton, maybe you mean the Agent Orange Registry?

http://www.publichealth.va.gov/exposures/agentorange/benefits/registry-exam.asp

The registry and the exam, as the link states, does NOT concede exposure to AO.

It might reveal AO conditions but, beyond that,in my opinion, it is useless. Our deceased inhouse lawyer here at hadit, years ago, Alex Humphrey, agreed with me on that point.

AO conditions are awarded due a claim being filed and C & P exams,for the disability claimed, with proof of exposure to AO, not due to this AO Registry stuff.

Many AO vets with AO comp never even pursued the AO Registry exam route.

"And does a VA Dr PCP have the responsibility to let a veteran know if he /she has any of these of these disease mention in the Registry?"

I think they should but that means they would have to be up to date on the AO presumptive list.

I think it is far better for any veteran exposed to AO to go over the presumptive list themselves.

[K9MAL]

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.”

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.

Edited December 13, 2014 by K9MAL

[john999]

What is the difference between ALS and Huntington's disease? Can a DNA check show if you are going to get it or not? It must be quite rare for the VA to just make it presumptive without a 30 year battle. After the VA made Parkinson's and IHD presumptive for AO I think they felt that was a bridge too far. Pretty soon they might come to the conclusion that AO is bad for you, and might cause many, many other problems and all cancers. They may wait until there are five Vietnam vets left alive to do that one around the year 2050.

John

[K9MAL]

As it stands right now it appears that my father does not have ALS. However, they still don't know what's going on and he's headed back to the Mayo Clinic on Monday. They mentioned the fact that he may in fact have PLS.

The VA will link PLS to ALS, as a presumptive condition, and the veteran will be entitled to the same benefits, I believe. I’m not going to dig any further than what I have thus far, until there’s a firm diagnosis, but here is a case from 2012 where the veteran was granted benefits for PLS: http://www.va.gov/vetapp12/files6/1241096.txt

The medical evidence of record indicates that the Veteran has PLS. Although ALS was not diagnosed as the Veteran's condition, it was noted by Dr. V. on more than one occasion that ALS could not be ruled out. Also, in the December 2008 and April 2009 VA neurology consultations, the neurologist stated that PLS is generally considered a rare variant of ALS. In addition, evidence was submitted by the Veteran regarding a connection between PLS and ALS. Among the information submitted were articles from the Columbia University Medical Center, Department of Neurology website which discussed PLS as a subset of ALS. An article from John Hopkins Medical website stated that PLS is a rare form of ALS. Therefore, the Board has considered whether PLS is a form or variant of ALS. Resolving reasonable doubt in favor of the Veteran, the Board finds that the medical evidence of record shows that PLS is a form or variant of ALS. Therefore, the Board finds that it is at least as likely as not that PLS is a form of ALS and should be subject to the presumptive service connection for ALS provided for by 38 C.F.R. § 3.318.

Therefore, the Board resolves all reasonable doubt in the Veteran's favor and finds that service connection for PLS, shown by the medical evidence of record to be a variant of ALS, is warranted. 38 U.S.C.A. § 5107(b) (West 2002); Gilbert v. Derwinski, 1 Vet. App. 49 (1990).


ORDER

Entitlement to service connection for PLS is granted.