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pdmanaz

Veterans Administration and Parkinson's

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I seem to remember something about the VA doing excellent work with Parkinson's Disease. Does anyone have any information regarding this? Thanks

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http://www.parkinsons.va.gov/

 

Using the online mapping tool doesn't show the PADRECC (Parkinson’s Disease Research Education & Clinical Center) but there is a contact person who can tell you the nearest location

 

http://www.parkinsons.va.gov/MDS_schedule.pdf

 

One of my Rock Steady Boxing guys got his VA approval for DBS. He was worried about the Neurological Assessment, but I explained he can carry on a conversation and is still driving, so

not wouldn't be an issue. He passed! 

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I found out about the great PD support through the VA also, so I went to them for care.  I have been with a VA MDS for about a year and it has been very good.  I didn't expect the nurse to contact me after hours to make sure I was taken care of! 

 

They sent me to a very good non-VA neurosurgeon for a DBS surgery.  It is all funded through them.  I may have some co-pay since it is not service connected and I will stay overnight, but that will be a small amount if I do.

 

I called the PADRECC hotline at first, but it came down to my VA PCP sending a referral to neurology. The neurologist confirmed the diagnosis and also happened to know a lot about PD.  I could have stopped there, but I requested an MDS and there happened to be an MDS at my VA hospital. So, the lesson learned is to get your PCP to refer you.  I didn't have a VA PCP yet, but I got the ball rolling with getting one.  The PADRECC will not get an appointment with you until they get a PCP referral in the VA system. The PADRECC hotline is supposed to know where the closest MDS will be for you.  However, the new MDS at Dallas came in under their radar, so I ended up telling them where this MDS was.

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I suppose it depends on which VA you are going to . Like any other treatment for anything it will depend on the staff and Dr that you see at the particular VA that you go to . I go to the one in Buffalo NY and find the care at this facility grade A . The Dr I see is a clinical professor at  the University of Buffalo , a nuerologist at the Brain and spine center , and a staff nuerologist at the VA as well as a Movement disorder specialist . So I am fortunate to have quality care in the area . other VA's may be better or worse depending on staffing .   https://medicine.buffalo.edu/content/medicine/faculty/profile.html?ubit=dlichter.

 

 

Dan

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I’m not Vietnam era but am 100% service connected for Parkinson’s.

Since diagnosis (December 2006) through 2014, I was seen by an M.D.S. at the Mayo Clinic in Rochester Minnesota; anticipating DBS surgery down the road, I started seeing a Neurologist at the V.A. in Minneapolis (no Fellowship in movement disorders but tons of experience & a very good reputation in the Parkinson’s community) in 2013. If you remember 2013/2014 was a period where the V.A was getting lots of bad press so I thought it prudent to check it out for myself before jumping ship from Mayo.

 

What I found was almost a mirror image concerning knowledge, service, recommendations, facilities, and any other characteristic I observed. When I asked my M.D.S. at the Mayo about her opinion concerning Parkinson’s treatment at the V.A., she gave them very high marks.

 

 

Read all about Parkinson’s treatment at the V.A. here.

National PADRECC (Parkinson’s Disease Research, Education, and Clinical Center) & V.A. PD Consortium

http://www.parkinsons.va.gov/

 

Fast forward almost three years and I’m scheduled for my pre-surgery evaluations on January 9th & 10th 2017, with a tentative surgery date of January 20th 2017.

 

I will be using the PADRECC in San Francisco.  Thus far, I only have praise for the way the team in San Francisco and the V.A. Travel Office in Minneapolis have bent over backward to accommodate my needs, schedule appointments, keep me informed concerning what to expect and what is expected of me, as well as provide & schedule all necessary lodging and travel for both myself and my Boy Friday.

 

 

Hopefully by this time in February, life will be lots easier.

 

                                 Ken

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Ken,

Thank you for an informative post. Do you have a positive DaT scan? Did you have a blood analysis to confirm PD? Is there consensus it is service related?

 

Update on DH: per usual, his intial application to increase his disability from 20% to 100% is misdirected and delayed. So he resubmitted.

 

However, the DAV volunteer assisting him said it is not uncommon for Viet Nam veterans who served during war time to be designated 100 % as service related PD if dx'd by independent MDS. Initially, he is to have a blood test that determines if agent orange is a factor. (??). If test is negative, PD related dx to agent orange is still possible,dependent on VA assessmemt.

 

She said after 100% service related disability is determined, DH will qualify for disability and pension. His existing income is not a consideration in determining amount. (Not what we have heard before)

 

Because he has PD and I have PD we now qualify for household assistance. If he becomes 100% service disabled for PD, both of us will have 100% medical/care giver costs covered. Hmmm...I think I will believe all this when I see it. Hope this is helpful to someone.

 

Good luck with your DBS, Ken. It has helped a lot of people.

 

NN

Edited by New normal

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NN:

 

Nope, no tests to confirm Parkinson’s; Just good old fashion neurological exam and tests to eliminate other possibilities. I’m not sure what you mean about a consensus concerning service connection.

Just like everyone else with a service connection, I was granted under the presumptive clause.

 

If your DH is rated 20% for Parkinson’s, something is wrong; the minimum rating for Parkinson’s is 30%.

When I get to San Francisco, I’ll ask about V.A. utilizing any blood tests for Parkinson’s confirmation but this is the first I’ve heard anyone mention it.

 

Good luck with the reassessment.

 

            Ken

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Ken

 

Per usual, I didnt make myself clear. DH is now 20% disabled for a back injury service related. He was dx'd with PD March 2016,plus several neuropathies atypical of PD.

 

So, he is applying for 100% disability for PD based on serving war time off coast (300 yards) of Viet Nam when agent orange was being used. With no fresh water on board, his laundry and showers were sea water. Plus they hosed down decks and personal areas with sea water.

 

The blood test is supposed to determine if there is agent orange affecting the blood. But, the VA person said...if blood is negative for agent orange...it is still possible to get a dx that is related to agent orange...it just depends on what the examining doctor says.

 

Your dx of PD was made the same way as DH. He just now really believes,it, cuz he has had to increase the meds. It is a real bummer for him because he always thought he would be my care giver...but we are doing ok...

 

Thanks for responding Ken....I wish you well...

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Update of DH VA application for PD benefits.

While DH's ship is not listed in Blue Water ships impacted by Agent Orange, his ship medical records we just received state his injuries occurred IN Vietnam....which is our evidence that he was there.

Next hurdle:  connecting Agent Orange to his PD.....just got report from our neuro in which he states his PD is most likely caused by Agent Orange.  He adds, as substantiation "he has Parkinsons with a negative DaT scan".  He stated he had additonal neuropathy...etc that is not common in typical PD.  

NOTE TO PD VETERANS:  we thought getting a doctors report confirming the link from PD to Agent Orange would be difficult. There is a one page report..fill in the blank and check boxes a dr can do in 15 minutes.  Amazing!  There are three boxes to check mark ....how  likely dr feels the neuro condition is  from agent orange.  With 1. positive  To 5. Negative  Well NO ONE can say positively PD origin....so our doc said  2. Most likely....then a few more questions about records to check off...and voila! 'Tis,done! 

We went through AMVETS and happen to get an excellent volunteer to guide us. Our next step to get 100% disability is to submit papers and wait 77 days.

Hope this info helps someone. We r especially happy cuz benefits provide extended care relief.

BTW: for ones who have discussed the value and merit of dat scans...I guess this is one case where a negative DaT scan is worth its money. (Smile)

 

NN

 

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Im trying to get benefits from the Camp Lejeune NC water issue. Check Google on this issue details and attys that will take your case to the VA for you.

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You pry all know this:

Veterans Affairs (.gov) › publichealth › ...
May 4, 2016 - Veterans who develop Parkinson's disease and were exposed to Agent Orange or other herbicides during military service do not have to prove a connection between their disease and service to be eligible to receive VA health care and disability compensation.

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