any veterans here

[stevef]

Hi

I have asked before on this site if there are any military veteran here that have ALS or think they have ALS. Please let me know if any of you are.

Thank You
Steve

[Al]

I think there are a couple Steve. Seems to me I recall reading here recently about a career lady soldier with ALS. Anybody else remember who it was?
AL.

[ZenArcher]

I was a Nuclear Electronics Technician in the Navy '92 - 00.

[esrich]

My husband has ALS. He was in the Marines when he was young, then later in life was in the USAR and Oklahoma NG. While in the National Guard he was deployed to Iraq for 13 months, which is when and where his symptoms started.

Shelly, caregiver of Eddie

[stevef]

Thank you to those who have responded. I am wondering becuase I was in the first gulf war and they say solidiers who were there have 2 times a chance of getting ALS then thise who were not there. Thank You also for those who ahve served

[ZenArcher]

Actually studies have shown that any veteran is slightly more than twice as likely to develop ALS regardless of when or where they served. Currently the VA will only presumptively connect vets that were in the Southwest Asia Theater of Operations between August 2, 1990 and July 31, 1991. I'm fighting this fight now to get all vets with ALS service connected. If you want info let me know I can give you links to all the documents and studies I've found thus far.

[pops&kiddo]

I served in the navy from 86 - 95, was in the Persian Gulf during operation Praying Mantis and Good Will in 1988. Currently working with the PVA and DAV for VA disability. Diagnosed at 39. This is the first time I've posted and would like to thank everybody for thier help over the last year and half, just been reading the posts and letting it all sink in. God Bless, Pops.

[Mary Helen Barr]

My father was a veteran - navy, Korean war. He also worked as a mechanical engineer for Westinghouse for many years, doing something with nuclear power (I'm sorry I don't know exactly what).

[sisgldnhr]

My husband was in the Vietnam in 1969-70. He worked in communications. He told me that he didn't do any fighting while there.

Sisgldnhr

[shellshell]

I have been a believer that some of the things my dad was exposed to in the Vietnam war most definately contributed to his ALS. Maybe I am wrong but I don't think so in my heart of hearts! I've heard too many stories of fireman, war veterians, etc that are exposed to chemicals (breathing them in) that have developed ALS. Coincidence...I don't think so...Just my two cents worth...:wink:

Michelle

[stevef]

The veterans and others that have been exposed do have a better chance of getting sick ALS or something else. I think the VA should step up and take care of them not base it off if you were in a certain place or when you came down with it. Just beause symptoms did not devolpe within a certain time fame does not mean you could not come down with something later on. I Thankl all of you that serve and those who's relatives served and also on this journey of lent may God be with all of you here

[texgrl]

I don't know if you've looked at this guys site yet, but he has alot of information on there, and he does talk about military persons who have ALS

http://members.aol.com/alspinpoint/index.html?f=fs

hope its ok to post the link...i found it on this site on the home page.

[Al]

If you found it here then it must be good. LOL.
AL.

[hearts_and_thoughts]

I firmly believe there is a connection between ALS and the military. I have 3 family members who all were veterans...except my sister who was married to an officer for 20 years and they lived on bases in Japan, Hawaii and the Phillipines and travelled all over the world together. My father was a World War II vet in the Navy and my brother has a 100% service connected disability. My personal opinion is that there are genetic predispositions that are triggered by environmental factors.

There is one thing I would like to accomplish for all veterans due to my personal experience with my brother. He was diagnosed BY THE VA with ALS in May of 2007. He didn't receive his benefits until February of 2008. There is no excuse for that. Social Security had his money in 4 days. I will personally fight the battle to close that time gap to a reasonable time period to the best of my ability. That has been an unnecessary cause of stress and has meant that my brother was unable to experience a few things he wanted to before he became too sick to. Shame shame on our US Government.

[DEIDRA]

hi all this is Deidra retired in 2002.currently diagnosed with PLS been symptomatic since 2003 finally diagnosed in 2007 its been a long journey. look forward to hearing from my brothers in arms.

Deidra

[ZenArcher]

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.

[Al]

What? A hostile takeover? No way. LOL. Let me know what we can do to help out Jeff.
AL.

[ZenArcher]

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 :)

[hearts_and_thoughts]

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.

[ZenArcher]

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 :)

[Walter]

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.

[CindyM]

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

[ZenArcher]

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 :)

[Walter]

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.

[Marjorie R. Wilcox]

My husband Rick, diagnosed Oct.'07 is a Navy Veteran... two tours in Vietnam. M

[stevef]

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.

[Bobby C]

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.

[Al]

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.

[ZenArcher]

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 (http://capwiz.com/alsa/home/) 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.

[DEIDRA]

:)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

[ZenArcher]

Who are you using for an advocate? PVA? DAV? Sorry for all the questions but I'm trying to see as many examples as I can so that I can update the paper the ALS Association is going to use.

By the way you don't even want to talk about appeal. Once you submit and they receive your initial package they will make their first decision. You have a year after that to submit additional evidence if you're turned down. During that time your claim remains open and if you are awarded connection it will be retroactive to the date of submission. If no additional evidence is submitted the claim will be closed and it becomes very hard to get it opened again. Appeals can take years to decide so stick with the additional evidence :)

[Glenda]

My husband is also a veteran, served in the Army '85-'88. He is currently in the process of applying for VA benefits. He has an appointment for the blood work and orientation on Tuesday and sees the doc on March 11th. Currently they have him listed at a priority level 6, although I have heard that should be level 4. Is that correct? Since he was diagnosed Nov. 06, I do not know if it would be worth the hassel of applying for service connection. Any thoughts? I am so tired of these government workers that know absolutely nothing about ALS... for example the SS agent who tried to tell me that he had to see the shrink because there may be a problem with his brain. As Ken so politely put it "No matter how many times he tells his brain to choke the living $#!+ out of her he did not have the ability in his hands to do it".

Zen, During the Rolling Over ALS Tour we will be cruising past or through 2 military installations and plan on educating the local residents about ALS and the military.

Glenda

[ZenArcher]

I would definitely apply. The worst they can do is say no. I've compiled a guide that the ALS Association is working on finishing that discusses benefits, the application process , evidence and some online resources. If you're interested in it contact Pat Wildman at the ALSA. The other thing to do before you do anything is contact your local Paralyzed Veterans of America (PVA) office. They have been a great help to me.

Concerning the priority group it is highly dependent on who you see. Priority Group 4 is catastrophically disabled which is where PALS should be but as of right now there isn't a default "in" so to speak. Your husband will have to be seen by the clinic and evaluated. I was granted priority group 4 and I walked in, got up on the table and such. All I had was decreased strength in my hands and arms. I know of other people that were much farther along than I am they and weren't granted priority group 4.

[rufus]

Hi Jeff and other fellow veterans......

This is my first time of posting but I've been visiting the Forum for about 3 weeks. My husband was dx with ALS last April. He is a 26 year veteran. USMC Pilot. Was in Viet Nam.

Have any of you read the book "Falcon's Cry" by Major Michael Donnelly, USAF (Gulf War). VERY insightful. He talks about the great number of guys who flew with him who came down LATER with ALS. His research (and many, many Doctors) led him to believe in a condition called organophoshate-induced delayed neuorpathy (OPIDN). In a nut shell (as I think I understand it), there was some kind of exposure to nerve gas or some kind of organophosphate-based poisons. It appeared that it was latent until they were once again exposed to this type of poison (usually through a pesticide (malathion etc.) Although he was very tough on the VA, my husband and I have been treated well and have gotten use of much equipment. Although I am VERY glad we do not have to depend on the VA. We are blessed to be able to have a Dr. at one of the best Neurological clinics in the country (Barrows in Phoenix, AZ).

Some of the best news we have received this past year is the passing of the ALS Registry Act. Maybe now something will doen as they see in black and white the list of veterans with Neuro diseases.

Thank you all for being here.

[ZenArcher]

I haven't read that book yet. Thanks for the information. I will definitely be doing some research.

[geezergeek]

DX 02/2006. I donated DNA (blood) to the VA database before they closed it down. Spent time at FT. McClellan training as Chemical Warfare Specialist. Civilian employment as Chief Chemist for a cookware manufacturer. Used most of the commercially available insecticides and creosote from time-to-time until they were banned, one by one. I've been exposed to so many chemicals in my life that it would be a practical impossibility to tie my ALS to just one or even two. I have to doubt that there is some common environmental exposure that triggered the disease in all of us.

[Walter]

Today, I spoke with a lady that interviews the participants and she told me that there are 2100 individuals in the study.
They haven't shut the VA registry down. They just aren't taking any more people into the study.

[sisgldnhr]

I was talking with a friend yesterday that told me that her cousin (who has ALS) was just awarded a substantial settlement with the VA. I am now wondering if I should make an appt. for Don to registar and be tested. I pulled his DD214 from his files last night and he was in Vietnam from from October 1, 1970 thru April 21, 1971. From what I have read all vets from that era are considered 'exposed' to agent orange.
I don't know how to go about making his appointment but I wrote down several numbers from the VA site. I'm going to start calling today to see how/where I can set up an appt. for him.
If anyone can offer any suggestions, it would be greatly appreciated.

Sis

[CindyM]

Let us onow how this works out, Sis. You two deserve all the assistance you can muster!

[ZenArcher]

Sis,

The first thing I would recommend is contacting the Paralyzed Veterans of America (PVA). They have been doing a lot of work with the ALS Association of late. I would also discuss with your friend what her cousin's settlement was for. You're going to have to provide evidence that your husbands ALS is related to military service. As far as I can tell from a quick search ALS is not presumed service connected for AO exposure. The information for the PVA office in Ohio is:

Cleveland OH VA Regional Office
240 E. Ninth Street
Room 1027
Cleveland, OH 44199
Phone: 216‐522‐3214
Fax: 216‐522‐7709

The VA paperwork process isn't near as bad as it used to be but it's still a jungle to maneuver so I would highly recommend that you get assistance from one of the advocate organizations (PVA, DAV, American Legion in order of preference).

[Zina Perry]

Dear Steve,
My husband, Mike has ALS and was in the Air Force from 1966-1968. He was stationed in Great Falls, Montana and worked in an underground missle site. From all I read :stress, trauma and other situations can lead to ALS. I know that being in the military has to be very stressful. Thank you for your post. Hopefully they can find the cause of the horrible disease.

Zina Akin Perry
Rusk, Texas

[sisgldnhr]

Thanks Cindy & Jeff,

I didn't have time today to get on the phone to the VA, I'm hoping that I will have some to myself tomorrow to make those calls. Jeff, I'm going to take your advice about going to PVA and to ask for some help filing out the paperwork.

This is a general question but has anyone on this site registered with the VA concerning agent orange in Vietnam?? and if so, what can we expect? Lol....thats a loaded question for sure :-) but I just would like to get a heads up on procedures.

This site is the best!!!

Sis

[ZenArcher]

I haven't been exposed to AO but I can at least give you an idea of what to expect. The PVA will be able to advise you the best route to take as well as assist with the paperwork. The VA will not great you with open arms. As far as AO goes the conditions below are presumed service connected meaning if you have one of these conditions, meet the service (location and/or time) requirements and file you will be service connected.

Vietnam Veterans
(Exposed to Agent Orange)
Served in the Republic of Vietnam between 1/9/62 and 5/7/75:

chloracne or other acneform disease similar to chloracne*
porphyria cutanea tarda*
soft-tissue sarcoma (other than osteosarcoma, chondrosarcoma, Kaposi's sarcoma or mesothelioma)
Hodgkin's disease
multiple myeloma
respiratory cancers (lung, bronchus, larynx, trachea)
non-Hodgkin's lymphoma
prostate cancer
acute and subacute peripheral neuropathy*
type 2 diabetes
chronic lymphocytic leukemia


*Must become manifest to a degree of 10 percent or more within a year after the last date on which the veteran was exposed to an herbicide agent during active military, naval, or air service.

Taken from: http://www.vba.va.gov/benefit_facts/Service-Connected_Disabilities/English/Presumpeg_0307.doc

I don't want to discourage you but you need to realize this is going to be an up hill battle. If you win and your husband is service connected you and he will be taken care of but the burden of proof will be on you.

[ZenArcher]

I posted a reply to your request for information around 7 am EST put apparently moderation has been put into place for either threads will links or me not sure which. When/If the thread is allowed it has some information concerning AO and the VA.

[Al]

It's the link Jeff, not you. Sorry didn't get to moderating duties till now.
AL.

[JACKIEMAX]

hello, esp. to those who know me. my husband, horace, was dx with als in jan. 06.
he retired in nov. 82 from 28 years in the air force with the rank of chief. he was stationed in several countries and united states states. i, too, believe there might be a
connection. jackiemax

[Xtina1217]

My dad was a SP4 in the Army in Germany, He was a truck driver who drove through Europe towards the end of the Vetnam Era.