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vietnam veterans with PD


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#1 johnnys

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Posted 04 April 2014 - 07:51 AM

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



#2 Tadpole

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Posted 04 April 2014 - 01:03 PM

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.



#3 johnnys

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Posted 04 April 2014 - 06:51 PM

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.



#4 Tadpole

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Posted 04 April 2014 - 07:30 PM

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.



#5 Curt732

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Posted 06 April 2014 - 12:26 PM

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.publichea...sonsdisease.asp



#6 MarkDC44

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Posted 05 December 2016 - 12:12 PM

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?

 

 



#7 MurrayPD2

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Posted 07 December 2016 - 01:30 PM

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.


Diagnosed May 7th 2015 - at 43 yrs old, just before my birthday

Mainly left side issues

Fused spine L4-5, C5-7

Active father

Active worker

 


#8 MarkDC44

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Posted 07 December 2016 - 10:21 PM

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.



#9 MurrayPD2

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Posted 08 December 2016 - 01:54 PM

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.


Diagnosed May 7th 2015 - at 43 yrs old, just before my birthday

Mainly left side issues

Fused spine L4-5, C5-7

Active father

Active worker

 


#10 johnnys

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Posted 08 December 2016 - 09:43 PM

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



#11 MurrayPD2

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Posted 08 December 2016 - 10:16 PM

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

Diagnosed May 7th 2015 - at 43 yrs old, just before my birthday

Mainly left side issues

Fused spine L4-5, C5-7

Active father

Active worker

 


#12 New normal

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Posted 18 December 2016 - 04:58 PM

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
Dx'd 6/13 @ 66 by MDS with sub linquil L dopa challenge. Meds: Carbidopa/l dopa 50/200 5x in 24 hr
4/15, reaction in 6 mos to Amantadine 100 mg 2x per day.
DaT scan '13, normal. MRI '13, normal. DaT scan '13 repeat, normal. DaT scan '14, normal. DaT scan '15, normal.
Symptoms: 90% - 100% controlled: bilateral body tremors, chin tremor, tongue tremor, rt leg drag, balance, slow movement, cognitive/speech, apathy, executive function, autonomic systems. Patient to Neuro, "Next appt, on or off meds?" Neuro to patient, "ON meds...you are too scary when off!" <smile>

DH: dx'd PD 4/15 @ 70 by MDS with l dopa challenge by prescription. DaT scan, '15, normal. Meds: 25/100 mg carbidopa/ L dopa, 6x per 24 hr. Now being evaluated by VA for "agent orange" PD.

#13 MarkDC44

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Posted 18 December 2016 - 08:26 PM

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


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#14 MurrayPD2

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Posted 19 December 2016 - 10:48 AM

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.


Diagnosed May 7th 2015 - at 43 yrs old, just before my birthday

Mainly left side issues

Fused spine L4-5, C5-7

Active father

Active worker

 


#15 pdmanaz

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Posted 20 December 2016 - 10:04 AM

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.

#16 MurrayPD2

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Posted 20 December 2016 - 11:58 AM

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.


Diagnosed May 7th 2015 - at 43 yrs old, just before my birthday

Mainly left side issues

Fused spine L4-5, C5-7

Active father

Active worker

 


#17 Linda Garren

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Posted 20 December 2016 - 02:00 PM

Thank you, thank you, to all who have served.  Thank you.  It is very hard to hear of the medical issues so many are left with.


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Age 69.  Retired from Johns Hopkins University and Medical Institutions after 36 years in a number of administrative coordination positions for Deans and Department Directors within the various institutions.

Diagnosed with PD summer 2014. 

 

 

 

 

 


#18 New normal

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Posted 01 January 2017 - 07:59 PM

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, 01 January 2017 - 08:12 PM.

  • pdmanaz likes this
Dx'd 6/13 @ 66 by MDS with sub linquil L dopa challenge. Meds: Carbidopa/l dopa 50/200 5x in 24 hr
4/15, reaction in 6 mos to Amantadine 100 mg 2x per day.
DaT scan '13, normal. MRI '13, normal. DaT scan '13 repeat, normal. DaT scan '14, normal. DaT scan '15, normal.
Symptoms: 90% - 100% controlled: bilateral body tremors, chin tremor, tongue tremor, rt leg drag, balance, slow movement, cognitive/speech, apathy, executive function, autonomic systems. Patient to Neuro, "Next appt, on or off meds?" Neuro to patient, "ON meds...you are too scary when off!" <smile>

DH: dx'd PD 4/15 @ 70 by MDS with l dopa challenge by prescription. DaT scan, '15, normal. Meds: 25/100 mg carbidopa/ L dopa, 6x per 24 hr. Now being evaluated by VA for "agent orange" PD.

#19 MurrayPD2

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Posted 03 January 2017 - 01:11 PM

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, 03 January 2017 - 01:12 PM.

Diagnosed May 7th 2015 - at 43 yrs old, just before my birthday

Mainly left side issues

Fused spine L4-5, C5-7

Active father

Active worker

 


#20 MarcB

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Posted 03 January 2017 - 03:46 PM

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.


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