any veterans here

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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 :)
 
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
 
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 diagnosed 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.
 
I haven't read that book yet. Thanks for the information. I will definitely be doing some research.
 
U.S. Army - Feb. '61 to Oct. '64

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.
 
VA Registry

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.
 
vietnam vets registry

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
 
Let us onow how this works out, Sis. You two deserve all the assistance you can muster!
 
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).
 
Husband was in Air Force

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
 
Va

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