Agent Orange and Neurological Disorders

I just read a post from a veteran who discussed the effects of Agent Orange and Parkinson’s Disease. It made me wonder if there are others who have had similar experiences? If so, is there anything you have learned from your medical team and/or the VA regarding this? Please feel free to share your story.

@colleenyoung

Good questions Teresa with respect to Agent Orange and neurological disorders. I’d like to bring @mivy @johnjames @ggopher @macbeth @retairforceman and @Robert43DAP into this conversation as they have experiences to share.

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Thank you for sharing this. My husband is being seen by the neurology department at the VA. He has 9-12 ‘full body spasms’ daily. It doesn’t matter what he is doing and we never know when they are going to happen. He has been given a UStep rollator by the rehab department in order to help keep him from falling during a spasm. He has had full body and neck MRI’s which show no damage to the nerves around either of his lamenectomies – neck and lower back. He is on Parkinson’s medication yet after all of this and my questioning if he could have Parkinson’s due to daily AO exposure in 1968 the doctors refuse to acknowledge that AO could be the cause.

We would like to seek a second opinion on the outside and live in San Antonio. Does anyone have a referral? This has been going on since 2012 and as his care giver I need rest and as the patient he needs resolution. Thank you.

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@djb0711

Thank you for sharing this. My husband is being seen by the neurology department at the VA. He has 9-12 ‘full body spasms’ daily. It doesn’t matter what he is doing and we never know when they are going to happen. He has been given a UStep rollator by the rehab department in order to help keep him from falling during a spasm. He has had full body and neck MRI’s which show no damage to the nerves around either of his lamenectomies – neck and lower back. He is on Parkinson’s medication yet after all of this and my questioning if he could have Parkinson’s due to daily AO exposure in 1968 the doctors refuse to acknowledge that AO could be the cause.

We would like to seek a second opinion on the outside and live in San Antonio. Does anyone have a referral? This has been going on since 2012 and as his care giver I need rest and as the patient he needs resolution. Thank you.

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Hello @djb0711, welcome to Mayo Clinic Connect. It looks like the Texas VA has a special assistance program for veterans affected by agent orange. I didn't see any phone numbers but they have a Contact Us on the website that you may be able to get some referral advice or suggestions from.

Texas Department of Health, Bureau of Disease Control and Epidemiology, Texas Veterans Agent Orange Assistance Program:
https://legacy.lib.utexas.edu/taro/tslac/20029/tsl-20029.html

The VA also has some information on related diseases here:

Diseases related to Agent Orange
https://www.va.gov/disability/eligibility/hazardous-materials-exposure/agent-orange/related-diseases/

Have you thought about reaching out to a veterans organization for help? The Vietnam Veterans of America has an outreach program for agent orange that you might find helpful. Website link – https://vva.org/what-we-do/outreach-programs/agent-orange/. The website has a link to a self help guide that you can print off or view here:

Service-Connected Disability Compensation For Exposure To Agent Orange for Veterans and Their Families (PDF)
https://vva.org/wp-content/uploads/2014/12/AgentOrangeGuide.pdf

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@johnbishop

Hello @djb0711, welcome to Mayo Clinic Connect. It looks like the Texas VA has a special assistance program for veterans affected by agent orange. I didn't see any phone numbers but they have a Contact Us on the website that you may be able to get some referral advice or suggestions from.

Texas Department of Health, Bureau of Disease Control and Epidemiology, Texas Veterans Agent Orange Assistance Program:
https://legacy.lib.utexas.edu/taro/tslac/20029/tsl-20029.html

The VA also has some information on related diseases here:

Diseases related to Agent Orange
https://www.va.gov/disability/eligibility/hazardous-materials-exposure/agent-orange/related-diseases/

Have you thought about reaching out to a veterans organization for help? The Vietnam Veterans of America has an outreach program for agent orange that you might find helpful. Website link – https://vva.org/what-we-do/outreach-programs/agent-orange/. The website has a link to a self help guide that you can print off or view here:

Service-Connected Disability Compensation For Exposure To Agent Orange for Veterans and Their Families (PDF)
https://vva.org/wp-content/uploads/2014/12/AgentOrangeGuide.pdf

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Thank you so much John. We will look in to all of this.

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@macbeth

@colleenyoung
@hopeful33250
All I know is that it has been recognized as related to a host of diseases in Vietnam vets, including Parkinson’s, diabetes, some cancers, and ischemic heart disease, among other conditions. The vet who helped us file a claim, at a nearby VA regional office, (and a comp doctor there) also believe it may also be connected to dementia/early onset dementia, which makes sense, due to the relationship to Parkinson’s and ischemic heart disease (the higher rate of ischemic build-up around the heart is bound to be happening elsewhere in the body – such as in the brain), but, that not enough veterans or their families are making the connection and filing claims. More claims filed = more attention from the government. Also, I am being told that it will take many more years of research before the connection is officially recognized between AO and dementias, in general. I realize that not everyone who gets a disease has a family history of that disease, but my husband’s family has no history of dementia, and I began to notice symptoms or wonder about him, as early as in his early – to – mid sixties, and maybe before that, looking back. But I was in denial. He also has the AO related ischemic heart disease. One of my brothers (Vietnam vet) had an AO related carcinoma, and had to have his leg amputated. It can wreak havoc decades after exposure. I know that many children of Vietnam vets have had problems that are being traced back to the AO exposure of a parent.

All you have to do, is begin to research this stuff on the net. There are a lot of very sad, very frustrating experiences related there.

I know that there is strength in numbers, and that being civil is very important, but that being tooooo polite does not get a job like this done. Vietnam veterans and their families need to be heard about these facts and overwhelming coincidences. They need to file claims. They need to write letters. They need to get louder. They need to push. They need to extend the support to Vietnam veterans that they rarely or never received for their service.

O. K. Now I’ll dust off my hands and get off my high horse. Can you tell I’m a little passionate about this?

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Keep up the GOOD WORK, and thank you for your service. I am a widow of a BURIED VETERAN from VIETNAM who experienced pain and mental illness. He died from a DRUG OVERDOSE in 1977, he was 31. AGENT ORANGE was not the only threat, there was bluand yellow and other colors. The GOVERNMENT COVERED MOST OF IT UP> HELICOPTERS BROUGHT BARRELS OF THE
stuff and some broke open, IT DEFOLIATED THE MEKONG DELTA SO THAT THE TREES WERE BARE and could not hide the ENEMY soldiers.

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@margaretob

Keep up the GOOD WORK, and thank you for your service. I am a widow of a BURIED VETERAN from VIETNAM who experienced pain and mental illness. He died from a DRUG OVERDOSE in 1977, he was 31. AGENT ORANGE was not the only threat, there was bluand yellow and other colors. The GOVERNMENT COVERED MOST OF IT UP> HELICOPTERS BROUGHT BARRELS OF THE
stuff and some broke open, IT DEFOLIATED THE MEKONG DELTA SO THAT THE TREES WERE BARE and could not hide the ENEMY soldiers.

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Decapitations and the killing of our soldiers for practically no reason politically was bus rides to WASHINGTON to STOP the DAMN WAR…..ENOUGH OF US WENT AND PRESIDENT LBJ STOPPED IT…

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@margaretob

Decapitations and the killing of our soldiers for practically no reason politically was bus rides to WASHINGTON to STOP the DAMN WAR…..ENOUGH OF US WENT AND PRESIDENT LBJ STOPPED IT…

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I made signs and sat on the WHITE HOUSE LAWN, rode buses, put letters in the papers etc. He left this earth with two sons,the baby was seven months. HE is now 43. and lives with ME….the oldest s 52 and lives in MAINE…..we all have DIABETES…

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