any veterans here

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Deidra, if you don't mind my asking did you get service connected? I'm in the process now. I was initially denied and have submitted additional evidence (only 38 pages). I'm waiting to hear the response. I've joined the ALS Associations Veterans Issue Team and I'm in the process with Pat Wildman from ALSA of compiling a guide to benefits for veterans with ALS. I have to assume that most of it will also apply to those with PLS, PBP and PMA. I intended to get a link posted here once it is accepted. I had to pay homage and make sure ALSforums was in there :)

We as vets, service connected and not need to communicate because the system isn't consistent and we need to look out for one another. Others on here can help with many issues but for most of the vet issues we only have each other.
 
What? A hostile takeover? No way. LOL. Let me know what we can do to help out Jeff.
AL.
 
At this point you're doing it by providing the forum. The VA system is like many of the other systems that PALS have to deal with meaning that they don't really know what ALS is. Its like that big mole with the 4 inch hair that Aunt <insert name such as Myrtle> had. Nobody talked about it but they all had to look. The goal for any veteran diagnosed with ALS is service connection because at that point money, healthcare and support are taken care of in one fell swoop. The problem is now that even though multiple studies have shown multiple ways in which service can increase the risk of developing ALS PALS still have to prove it. That has been where I've been focusing my power of late and why I joined the Vets Issue Team.

Don't worry in the not so distant future I may be posting requests etc but in the meantime you da man :)
 
I wish my brother would help in your battle. He has a law degree. He also is VERY POLITICALLY inclined. I asked him on previous occasions but he said he didn't want the stress.
 
I can understand and I respect that decision. We do have help. I spent about two hours on the phone tonight with Pat Wildman who is the Director of Communication and Public Policy for the ALS Association national. He is quite we informed about what is going on at the Hill and who thinks what etc.

The simplest thing we can all do is just keep in contact with our legislators so they remember ALS. I've put it on my calendar as a task that occurs once a month to email Oprah, Montel Williams, CNN, my local NBC affiliate and now I'm adding my legislators. Keep bugging them till they pay attention :)
 
PLS-ALS Military Service

Just found this site. I am a Coast Guard vet. I have PLS. A friend that I met in boot camp and served in Viet Nam together just died of ALS. We thought it was just a coincidence that we both came down with similar disorders until I read about increased incidence of ALS, PLS, and two other disorders. I am in the study that is being conducted by the VA and Duke University. The lady told me that the study probably won't do me any good but might help others that are serving and will serve.
 
Hi Walter. Welcome to the forum. Sorry to hear about your DX. I am glad you decided to join us, though. GLader still that we are able to help link our vets to each other!:-D Cindy
 
Walter do you have any more info on the study? Just curious if its something I can help out with. That is if its information gathering only I'm already taking enough pills and if they take any blood out of me I might be in trouble :)
 
VA ALS-PLS Registry

The site is www.durham.hsrd.research.va.gov/alsregistry.asp
However,they stopped enrolling new people as of September 30, 2007.
I haven't heard of any results.
I gave blood and answered a bunch of questions about my military service.
I am also in the "Primary Lateral Sclerosis Worldwide Patient Registry", which is being conducted out of the Northwestern University in Chicago.
www.als-pls.org/ I have given blood for this study too.
 
to stevef

My husband Rick, diagnosed Oct.'07 is a Navy Veteran... two tours in Vietnam. M
 
something has to be done

Jeff

It seem way to many veteran have ALS or some form of it. Something must be done and let me knwo what I can do to help. The government need to stop using soliders as test dummies for drug shots etc.
 
I'm responding to all of you who are vets. I served from 1953-1955 in U. S. Army Headquarters in Europe in the A. G. Division. I went to school on the GI Bill. I think Bill O'Reilly (Fox) is pushing for a new benefit bill for vets of Iraq service. The GI Bill was the best thing that happened to me and my wife. After graduating, I went to work for U. T. Austin, and retired from there in 1995. Luckily, I have not had to lean on the VA for assistance of any kiind. But the day be come around sooner than I think. Does anyone know if the VA will provide funds for wheel chairs or other assistance (just in case Medicare turns one down?)

I will watch for your posts. This is such a great and informative forum.
 
Sorry Walter. For site security (spam,porn,pills) new members posts go into moderation if you post a link or certain words and phrases will trigger it as well. Cindy, David or myself visit the link to check it to see if it is relative to the forum. If it is, we approve it as I just did. Being a volunteer outfit it may take a while to get one of us to look at it, depending on the time of day.
AL.
 
In terms of stopping the shots that is a whole different can of worms. As far as advocating for PALS and vets I can offer some advice there and if Lorie happens to read this I'm sure she could add some more.

First go to ALS Association Advocacy Action Center and type in your zipcode in the search box. This will give you a list of your Federal, State and Local officials. Since as far as this topic goes we're dealing with vets most of our correspondence will be with the federal side. If you look under "Write Your Officials" there is a link to write everyone at once, "with one click". You will be sending a letter to the President, your Senators and your Representative. After you click on the "with one click" link make sure everyone is checkmarked and that Email is selected. In the Subject box enter something like "Benefits for Veterans with ALS". For the Issue Area pick "Veterans Affairs". For the body of the letter you can use the following which was prepared by the ALS Association for just this purpose or write your own. Just remember that angering these people does nothing other than hurt the cause so be respectful. Also realize that the webpage will put the proper greeting on each message. To make it easy you can paste the following in:

I am writing to express my concerns about the treatment of ALS as a service-connected disability by the Department of Veterans Affairs. Specifically, I am concerned that because the symptoms of ALS must be documented within one year of discharge in order to qualify as service-connected, access to needed VA benefits that come with service-connected status is denied to veterans who have dedicated their lives to serving our country.

Amyotrophic Lateral Sclerosis (ALS), better known as Lou Gehrig’s disease, is a progressive neurological disease that destroys a person’s ability to control muscle movement. As the disease progresses, people with ALS no longer are able to walk, talk or even breathe. They become prisoners, trapped inside a body they no longer can control. The disease is always fatal, in an average of two to five years following diagnosis, and we do not have an effective treatment for the disease, nor a cure. Although we do not yet know a cause, we do know that ALS occurs at a greater rate in people who have served in the military.

Studies conducted by the Department of Defense and the Department of Veterans Affairs have found that Gulf War veterans are twice as likely to develop ALS as those who did not serve in the war. Moreover, a study conducted by researchers at Harvard University found that people with any history of military service, from World War II to Vietnam, are approximately 60% more likely to die from ALS than those who did not serve in the military. And, according to the latest statistics from the VA ALS Registry, we are seeing the disease in veterans who have served in the military since the start of the current conflict in Iraq.

Despite this evidence, ALS is not presumed to be a service-connected disease. Although ALS may be considered service-connected for those who served in the SW Asia Theater of Operations between August 2, 1990 and July 31, 1991, other veterans with ALS are not granted service-connected status even though studies have shown elevated rates of the disease in veterans regardless of when or where they served.

Those of us in the ALS community believe that the disease should be considered service-connected regardless of whether the diagnosis or symptoms of ALS are present within one year of discharge and regardless of when or where a veteran served in the military. Therefore, I urge you to support making ALS a service-connected disease. Moreover, I ask that you contact the Secretary of Veterans Affairs to request that the VA review the concerns raised by those of us in the ALS community and take the steps necessary to ensure that veterans with ALS have access to the VA benefits that meet their needs.

I appreciate your consideration of my concerns and look forward to hearing from you and working with your office in support of veterans with ALS.

Lastly, fill out your name and sender information and then Send Message. You can expect to get an email shortly after saying that the message was received and then probably a canned response a few days later. In rare instances you'll get personalized responses or phone calls. If this happens jump on it even if you're not sure what to say. If you can put a face to the disease and educate a little you've made progress.

Unless you get that personalized response do the same thing next month and the month after at, repeat, repeat.

If anyone has questions or wants help feel free to PM me or post here and I'll do what I can.
 
VA compensation

:)Jeff I just finished my package for service connection this week, so the jury is still out.I will keep all informed of the VA package I am prepared to fight the good fight I was told that on appeal over 50%receive compensation so we'll see .


Deidra
 
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