Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
johnnys

vietnam veterans with PD

Recommended Posts

johnnys    460

Hi,

I am a vietnam veteran and looking for other veterans with PD who served in Vietnam.Hoping to start a new group on this subject.Especialy interested in sharing VA healthcare on this subject.

If interested please reply.

John

Share this post


Link to post
Share on other sites
Tadpole    0

I would certainly enjoy hearing more about personal experiences since, although my husband is eligible for treatment at VA facilities, they are sufficiently far away as to have discouraged our use thus far.

 

This is just random info: There are a couple of groups already, a Yahoo group, vets_parkinsons_agentorange, and, of course, the vets.yuku.com Agent Orange subgroup, Agent Orange, Heart Disease, Prostate and Parkinson's. The later is for people applying for benefits for all reasons including Parkinson's. The former is a Parkinson's support group (I think) that has steady but slow traffic.

Share this post


Link to post
Share on other sites
johnnys    460

I would certainly enjoy hearing more about personal experiences since, although my husband is eligible for treatment at VA facilities, they are sufficiently far away as to have discouraged our use thus far.

 

This is just random info: There are a couple of groups already, a Yahoo group, vets_parkinsons_agentorange, and, of course, the vets.yuku.com Agent Orange subgroup, Agent Orange, Heart Disease, Prostate and Parkinson's. The later is for people applying for benefits for all reasons including Parkinson's. The former is a Parkinson's support group (I think) that has steady but slow traffic.

I know about those groups you mentioned. I volunteer at a local parkinson support group and have met many vets,some who didnt know they were eligiable for va comp and healthcare for PD.At one meeting there were four vietnam vets of which one had never heard of the VA connection.Im sure there are many out there who need to know about coverage.

Your husband can get his presciptions filled at the VA  free.Im intersted also in knowing how the VA covers care like DBS if needed.

Share this post


Link to post
Share on other sites
Tadpole    0

I seem to recall having read somewhere that the PADRECCs have funded or done a lot of research and clinical studies/trials of DBS. I have always assumed they were probably one of the best sources of Physicians with expertise in the area. Unfortunately, I don't recall where I ran into that information. It might have been at one of the VA websites. On the other hand, you are right, I'm not so sure the VA picks up the cost of DBS if it is done outside of one of these studies. They might not cover It at all. Interesting question.

 

You can't get prescriptions filled unless you visit the VA clinic once a year. So far we have not visited the VA clinic here in WA. I signed my husband up for the health care but, because we have other options for medical that also are fully covered, he's not inclined to want to go to the nearest VA facility once a year. Too bad because drugs is the one thing our insurance doesn't fully cover and we are paying 15% for name brands and $15 copays for generics. Doesn't sound like much but it adds up.

Share this post


Link to post
Share on other sites
Curt732    10

Please allow me to be so bold:

I am “50%  SC” in VA speak.  That means I have a 50 % service connected disability.  I have PTSD.   It also means I get a check every month for around $1200.  It also means 100% of my other medical needs are free to me except dental.  My prescriptions are free.  Recently I discovered that Vietnam vets, with PD, stand a very good chance of getting additional benefits without having to prove exposure to Agent Orange.

Start with the link below and follow through.  It's fascination.  I do wish you well.

 

Tell me what you think.

http://www.publichealth.va.gov/exposures/agentorange/conditions/parkinsonsdisease.asp

Share this post


Link to post
Share on other sites
MarkDC44    4

Troop C, 1/9, 1st Cav - stationed in Phouc Vinh '69-70.

 

This was an old thread, but hopefully you're still around - where/when were you there?

 

 

Share this post


Link to post
Share on other sites
MurrayPD2    219

Mark,

 

Welcome!

 

I am not a Vietnam Vet, but I am a military vet.  The VA has an MDS for me and she just recently recommended a DBS.  Now, the VA has me set up with a neurosurgeon to have DBS surgery next month.

 

I am not service connected, and I am not sure I will be; but I know a least one vet here is service connected for PD.

Share this post


Link to post
Share on other sites
MarkDC44    4

Thanks Murray!

 

I was recently diagnosed w/ PD at the VA.  It was my first encounter with the VA, just never went there in all these years.  Glad I did, they're very good.

They pretty much go on the assumption that my PD is agent Orange related, from Nam.  My area was certainly VERY heavily defoliated by the stuff.  They encourage applying for disability, which I did.

No idea how that will play out, though.

Share this post


Link to post
Share on other sites
MurrayPD2    219

I have seen it on their own website that they did connect agent orange to PD.  So, if they confirm you had that exposure, you will get disability. You can get DAV, American Legion, or other groups to represent you if you are concerned.

 

I just started using the VA about 1 year ago.  Once I knew I had PD, I knew I had to get it.  Otherwise, if it gets too hard to work, I am in trouble.

Share this post


Link to post
Share on other sites
johnnys    460

Hi Mark

It took me a year to get the paperwork to go through.I dont see a VA nerologist because our area has no neurologist and out of town is atleast a two hour trip.My area on Highway 13 north of saigon also was a heavily sprayed area.Im curious though how the natives dealth with the exposure.

I was in a artillery battalion ,ist infantry,7th battalion charlie battery.

Just a year of our lives,huh

john

Share this post


Link to post
Share on other sites
MurrayPD2    219

I feel for you guys. The burn pit mortars in Iraq still don't compare to Nam. I have a relative with agent orange exposure. He has 70% now

Share this post


Link to post
Share on other sites
New normal    1,273

Hi guys.

 

My husband (DH) was dx'd with PD 3/16. He served on a destroyer off the coast of Viet Nam during '68-'70. Often they ran with no fresh water. The bathed and did laundry in sea water flowing from de foliaged coast lines.

 

Part of his dx included several points of neuropathies in his legs and arms and other places. This combined with his clinical dx suggests it may be caused from environment. Our understanding is VA can take dx from non VA dr. That might increase with new VA admin.

 

He is already 10% disabled. Has been working with DAV. But, like so many others, his records "have been lost in a fire." So that makes for added delays.

 

Good for you guys to keep trying.

 

NN

Share this post


Link to post
Share on other sites
MarkDC44    4

Murray:  The working part, at least, is something I didn't have to worry about for long because of my age.  I started having symptoms (tremor, some cognitive troubles) during my last year, and I started to                   feel embarrassed.  Was not diagnosed at the time.  So it made me decide to retire a few months earlier than I might have otherwise.  So I feel for you there, man - I was lucky that this all came on                   later in life for me.  Was your relative in Nam?  (the one exposed to AO)  Do you know where?

 

JohnnyS:  Hey, do you remember a place/town name where you where?  As soon as you say north of Saigon, I figure you weren't far from where I was (Phouc Vinh).  That was a nasty area for AO.  

                 When were you there?

 

NewNorm:   Lordy, the things we don't think of.  I would have thought a destroyer off the coast would be pretty safe, but...   Yeah, if your water comes from the stuff...   man.....  

                    Well, I like the way he's keeping his doctor on his toes ("too scary when you're off"...)

                    Like Johnny said - just a little year out of our lives, huh?

 

Mark

  • Like 1

Share this post


Link to post
Share on other sites
MurrayPD2    219

Murray:  The working part, at least, is something I didn't have to worry about for long because of my age.  I started having symptoms (tremor, some cognitive troubles) during my last year, and I started to                   feel embarrassed.  Was not diagnosed at the time.  So it made me decide to retire a few months earlier than I might have otherwise.  So I feel for you there, man - I was lucky that this all came on                   later in life for me.  Was your relative in Nam?  (the one exposed to AO)  Do you know where?

 

He was in Nam.  I would have to find out where.  He was Army, but I never heard anything about his time there.  I don't think he wants to discuss it.  He also doesn't visit with family much, so I don't get a lot of opportunities to visit.  However, when I talk about VA, he is a big advocate and will talk a lot about that.

Share this post


Link to post
Share on other sites
pdmanaz    48

I was serving on the USS Coral Sea CVA43 between about 1/1/1967 to June 1970. Spent 3 Vietnam cruises but have no contact with land. Also my ship isnt on approved list with the VA. I do have PD and was considering the VA for treatment. I am relocating to Biloxi Ms where a VA hospital is near by. Just wondering if the VA will treat me since my PD may not be service connected.

 

Wondering how good the care would be compared to local physicians. Cant locate a MDS in the immediate area so may default my care to the VA.

Share this post


Link to post
Share on other sites
MurrayPD2    219

I was serving on the USS Coral Sea CVA43 between about 1/1/1967 to June 1970. Spent 3 Vietnam cruises but have no contact with land. Also my ship isnt on approved list with the VA. I do have PD and was considering the VA for treatment. I am relocating to Biloxi Ms where a VA hospital is near by. Just wondering if the VA will treat me since my PD may not be service connected.

 

Wondering how good the care would be compared to local physicians. Cant locate a MDS in the immediate area so may default my care to the VA.

I am being treated and It is not service connected. I am fortunate to have an MDS at a standard VA hospital and she is great.  I guess you know they PD centers that will have an MDS for you.  Local hospitals are not guaranteed to have one, but there are neurologists that could know a lot about PD also.

Share this post


Link to post
Share on other sites
New normal    1,273

Pdmanaz...

 

DH (dear husband) served on coast of Viet Nam same time period. He will have exam at VA in two weeks. That exam dr can decide if PD is service related...as I understand...right then. There is a list of diseases that are now..recently..designated "presumed" to be service related if vet served during a certain time period in a certain area.

 

"Blue water" vets are recognized. The VA agent orange website lists dozens of ships that automatically qualify. The site says if your ship is not listed, it does not stop from qualifying. Most blue water veterans with PD were on ships that were transports, and men went on shore....but in my reading...even ships that were on shore for one day picnics or doing service work qualify. It is listed by ship...since ship notes dont say which men went on shore.....so it must be assumed any man could have gone on shore. This info is on agent orange site...it is a fairly new posting...recent months...

 

The VA woman assisting DH sd food for ships were often stored on island...so ship bound men were eating contaminated food. DH was on destroyer that shelled coastline weeks at a time...for 8 months within 300 to 1200 yards. Also, vietnamese observers would board from island...which substantiates proximity of ships to shore.

 

PD Murray...maybe u shd review site..the VA counselor said PD is becoming so common VA is recognizing service relationship. She said cuz DH was dx'd by private MDS, the VA dr just has to confirm DH was there during agent orange. It also makes sense now to us cuz DH has multiple polyneuropathy in extremities..atypical for PD...also he got bilateral tri geminal neuralgia in face about 20 years ago..bilateral is nearly 100% rarity. VA web site says any unexplained symtom is now considered if vet served in nam during that time.

 

Hope this info helps someone...we will learn soon if what is said is true.

 

Good luck to you.

 

NN...stay strong

Edited by New normal
  • Like 1

Share this post


Link to post
Share on other sites
MurrayPD2    219

PD Murray...maybe u shd review site..the VA counselor said PD is becoming so common VA is recognizing service relationship. She said cuz DH was dx'd by private MDS, the VA dr just has to confirm DH was there during agent orange. It also makes sense now to us cuz DH has multiple polyneuropathy in extremities..atypical for PD...also he got bilateral tri geminal neuralgia in face about 20 years ago..bilateral is nearly 100% rarity. VA web site says any unexplained symtom is now considered if vet served in nam during that time.

 

 

Thanks.  When I talk to C&P exam doctors, they are not too open about it.  The thing is, they look for black and white.   They ask when the PD started, but that is impossible to tell.  I am thinking old nervous ticks were actually early PD.  I don't know how many years I tripped over rugs. They want me to say something like I fell in some toxic waste and woke up knowing I had PD the next day.  I can point to the Iraq Burn Pits, or the stuff I was exposed to in Germany, and/or New Mexico before that.  The truth is nobody knows for sure, but I like what you pointed out.  If that is true, it would appear that military service puts you at higher risk for PD.  If they generally make that link, then they would have to admit those who got PD after service most likely were affected by the military environment exposure.

Edited by MurrayPD2

Share this post


Link to post
Share on other sites
MarcB    17

Greetings all.  I’m new here.

 

I was in Cu Chi, Vietnam 10/66 – 10/67. 1st Battalion, 27th Infantry, 25th Infantry Division.  I’m 70% service connected.  My experience has been I did not need to prove exposure, just provided my unit and dates I was in country.   I was an infantry grunt and spent 27 days/month in the jungle.

 

I live in St. Paul, MN and feel the health care I get could not be better.  Nothing ever falls thru the cracks.  Best care I’ve ever had.  However, the claims processing side of the VA could not be worse.  Don’t equate the quality of the health care with the lies and run around the claims processing people will visit on you.  They’re separate.

 

If you’re having trouble getting a disability claim recognized, go to your county veteran’s advocate office or a veteran’s organization.  There is a veteran’s org in Cleveland that can hook you up with a free lawyer.  I needed one.  Do not take anything they say at face value.  If they deny your claim, appeal.

 

I’m glad I found this thread.

  • Like 1

Share this post


Link to post
Share on other sites
New normal    1,273

Thanks.  When I talk to C&P exam doctors, they are not too open about it.  The thing is, they look for black and white.   They ask when the PD started, but that is impossible to tell.  I am thinking old nervous ticks were actually early PD.  I don't know how many years I tripped over rugs. They want me to say something like I fell in some toxic waste and woke up knowing I had PD the next day.  I can point to the Iraq Burn Pits, or the stuff I was exposed to in Germany, and/or New Mexico before that.  The truth is nobody knows for sure, but I like what you pointed out.  If that is true, it would appear that military service puts you at higher risk for PD.  If they generally make that link, then they would have to admit those who got PD after service most likely were affected by the military environment exposure.

Murray....that's my point...we have friends who had to go thru what you are. On agent orange site there is a last paragraph that amends previous criteria.(2016). It says because there are so many neuro diseases associated with agent orange...some...like PD are automatically presumed if you served during active wartime. It used to be required symptoms appear within 1 year...not so anymore. Also, "nervous ticks"? The site says "unexplained neuro" symptoms are now being considered.

 

I agree with Marc...go,thru DAV or VFW....our rep called VA directly and expedited process.

 

Marc...if you are 70% because of PD...maybe you shd consider going for 100%.

 

Again...wish u luck...hoping new administration will make it easier. Keep us posted.

 

NN

  • Like 1

Share this post


Link to post
Share on other sites
Hunter Dan    68

I am not a Vietnam Vet , But to all who are welcome home and thank you for your service !!!!!!!!!!!! But I am a veteran that is 100% service connected for PD due to contaminated ground water at the installation I was stationed at .  After being diagnosed with PD and no family history I wondered what may have kicked started it at my age  (52 now ,symptoms for several years ) . I narrowed it down to the contaminated ground water . So I filed a claim , to do that you need to contact a VA counsler . There was one at the local VA clinic the vfw has them and there is one inside our county building at the department of veterans affairs . What I took to the counsler were all the reviews from my doctors appointments a hand written letter of my own explaining in my own words what I new happened . In that letter you have to be convincing , use words like I am certain and convinced instead of I think . dd214 and anything else they ask for . Then your claim will be reviewed and you will see one of there evaluators . At this appointment it is critical that you explain in detail all the symptoms that you have had due to your PD not how your feeling right then but your worst days and all the symptoms as the VA may rate your PD at 30% but they also rate each symptom and add them up .Anxiety ,depression ,tremor ,headache ,stiffness ,urination issues, any and all and always worse case . Then you will probably get more appointments with specialists that will rate each symptom . then a final rating if they determine that it is service connected . I go to the Buffalo NY VA the nuerologist is awesome and a mds also . I currently get all my health care at the VA and have no complaints.

 

Dan

  • Like 3

Share this post


Link to post
Share on other sites
MurrayPD2    219

I am not a Vietnam Vet , But to all who are welcome home and thank you for your service !!!!!!!!!!!! But I am a veteran that is 100% service connected for PD due to contaminated ground water at the installation I was stationed at .  After being diagnosed with PD and no family history I wondered what may have kicked started it at my age  (52 now ,symptoms for several years ) . I narrowed it down to the contaminated ground water . So I filed a claim , to do that you need to contact a VA counsler . There was one at the local VA clinic the vfw has them and there is one inside our county building at the department of veterans affairs . What I took to the counsler were all the reviews from my doctors appointments a hand written letter of my own explaining in my own words what I new happened . In that letter you have to be convincing , use words like I am certain and convinced instead of I think . dd214 and anything else they ask for . Then your claim will be reviewed and you will see one of there evaluators . At this appointment it is critical that you explain in detail all the symptoms that you have had due to your PD not how your feeling right then but your worst days and all the symptoms as the VA may rate your PD at 30% but they also rate each symptom and add them up .Anxiety ,depression ,tremor ,headache ,stiffness ,urination issues, any and all and always worse case . Then you will probably get more appointments with specialists that will rate each symptom . then a final rating if they determine that it is service connected . I go to the Buffalo NY VA the nuerologist is awesome and a mds also . I currently get all my health care at the VA and have no complaints.

 

Dan

 

I haven't heard of a contaminated water issue.  thanks for the tips!

Share this post


Link to post
Share on other sites
MarcB    17

Murray....that's my point...we have friends who had to go thru what you are. On agent orange site there is a last paragraph that amends previous criteria.(2016). It says because there are so many neuro diseases associated with agent orange...some...like PD are automatically presumed if you served during active wartime. It used to be required symptoms appear within 1 year...not so anymore. Also, "nervous ticks"? The site says "unexplained neuro" symptoms are now being considered.

 

I agree with Marc...go,thru DAV or VFW....our rep called VA directly and expedited process.

 

Marc...if you are 70% because of PD...maybe you shd consider going for 100%.

 

Again...wish u luck...hoping new administration will make it easier. Keep us posted.

 

NN

 

 

I'm only 30% for PD, but since I've had symptoms for 8 years (8 years of progressing,) I should figure if there are better benefits for being 100%.  Do you know?

 

Thanks

Share this post


Link to post
Share on other sites
New normal    1,273

Marc

 

Y'all may be right that PD may not be 100% for everyone...DH's age and symptoms pretty much should be 100%, we were told this dr appt is not for exam or determining %... it is only to determine if DH was in war time near Nam. When I looked at lists of ships...they indicated just ONE day on land could qualifiy as possible exposure. The degree of disability I am not certain.

 

DH ship seldom had potable water....so their pulled their laundry behind ship to launder, showered in sea water, and hosed down decks with sea water..The ships that did bring water were docked on Nam. So VA asst said water AND food were a factor for all ships in region. It sounds like the slightest contact with the herbicide is now taken seriously.

 

I dont believe anything with the VA until it is signed, sealed, and delivered. Good luck to you all...

 

 

Thank you for your service!

 

NN

  • Like 1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×