Dealing with the VA

[ranger6970]

Can any veteran with PD give me some insights on how to work VA. I was diagnosed in July of this year and have seen two separate neurologist from VA. One that diagnosed me and the other from C&P. Both concurred with the original diagnoses. I have been awarded compensation. The issue I'm having is there is no urgency from them. I made an appointment and waited 7 weeks to see a DR only to be met by a resident who really couldn't answer any questions. She was supposed to write a script which I have not received but noted it was in the records as of yesterday. I had two pages of questions with me and she answered one. Any advice?

[Balderdash]

What is VA and CandP What did you get compensation for.Perhaps if you asked your unanswered questions someone could help.

[ranger6970 in reply to Balderdash]

VETERANS ADMINISTRATION

C&P compensation and pension

[sharron2]

My husband is rated by the VA and gets his prescription filled there, but goes to a private movement specialist for treatment. He only goes 1 to 2 times a year and we have other insurance so it doesn't cost much. He takes the prescription from our private doctor to the Primary Care Physician and they issue one for the VA pharmacy.

We went the private route for more in depth care. The VA is great for giving pills, but not time to the patient. We went to a neurologist that specializes in movement disorders and was in a group associated with a medical school, so we get the most up todate treatment.

To see about meds, I would go back to the clinic in person and get the script myself. Then you can take it to the VA pharmacy for the 1st fill and refill by phone afterwords. You can ask for a patient advocate if you are not happy with the care you are getting from the VA. Ask at the help desk for an advocate to intervene for you if you can't get the doctors attention.

The dept of veterans affairs has some videos about Parkinson's. The Parkinson's foundation has some great educational resources to read or watch also. In my opinion I would get a good conventional medical knowledge base and then you can learn about the alternative options. Then you can ask the doctors for clarification. The website neurotalk on the Parkinson's section has some well grounded posts from fellow parkies. The website The Science of Parkinson's is good. The Mayo Clinic and Cleveland Clinic have good basic information about Parkinson's also. Type in Parkinson's along with Mayo Clinic and you will see the patient education links.

The site Veterans Benefits Network is a group of vets you can post to that have plenty of experience with VA issues and how to get help.

I really self educated for my husband as he really did not want to put the effort into it, and he knew I would.

Hope some of this will help you.

[ranger6970 in reply to sharron2]

WOW so helpful! Thank you so much. It sounds as if you have everything under control. I will use your advice and appreciate you and your husband taking time to communicate with me. I have worked with VA for so many years but never on a chronic illness. Best to you and your husband

[Don_oregon_duck]

Having just started with the VA, what Sharon says is what I was told also. I will give you my understanding in layman's term's.

I found out that I was awarded compensation for 90% disability (it will soon be 100%) just one week after being prescribed Rytary, a $1000 per month medication. Since I knew the VA was close to making a decision, I was going to only fill two weeks at a time. I got VA approved. i then went to the local VA facility to start the process of getting integrated into the VA health system. I did not wait for them to notify me. It seems that every one I talk with in the VA is willing to go overboard to help. As Sharon said, find out who the community case worker is and reach out to them. I believe you will be impressed with the help. They always say , "thank you for your service.," and they mean it.

So as I was finishing up with my enrollment, I told the VA rep that I had a very serious problem I would like his help on. I told him about the medication I am taking, and ask him if there was any way he could help me get a prescription filled. He said the magic words, "I can't but follow me and I will take you to someone who can." Within 15 minutes I was meeting with a doctor. It took me, not 90 days, not 30 days , but 15 minutes to see the doctor. They are there to help you, if you will stay on your mission until you can talk to the right person.

This is getting lengthy because it is very fresh o my mind. As Sharon said, most likely you will want to use your private doctors, especially if you have medicare with a medicare supplement. Either way you will need to have a VA primary care doctor who must write all of your prescriptions. Your private doctor sends the RX info to the VA PCP along with the chart notes supporting the RX. The VA Doctors, as explained to me, are asking for the notes to support the RX they are going to write for you and not to second guess your private doctor. The VA Dr sends the prescription to the VA Pharmacy. Many private doctors are VA approved who can then send their RX's directly the VA without going through your 'VA PCP.

I hope this information is helpful to you.. I am sure others who have had years of 'VA experience can add to or correct on some of my comments since I am brand new in the VA system.

[jt12]

Hi ranger,

The VA isn't fun to deal with. They denied my claim for my PD because I believe I was exposed to toxins at Ft. McClellan, AL. When I went to talk to a VA representative, she basically told me that because I was only there for 3 months how could I have been exposed to anything harmful enough to give me PD, and Vietnam Vets to exposed all the time to so many more chemicals. Well besides Ft. McClellan having toxic chemicals, as it had a Chemical School ther, the town next to the base had a chemical plant that was leaking Agent Orange & other pesticides into the air, water supply, so all of us at Ft. McClellan were getting double doses of toxins, plus So many veterans have become very ill & a lot have passed due to complications, but the VA fails to recognize any exposure. It's SICK!! Sorry I didn't mean to get on my own rant, but it really makes me mad how us veterans are treated.

[ranger6970 in reply to jt12]

jt12

so sorry to hear about your experiences with VA. When I first got back from Vietnam I tried to deal with them but their business model is delay delay delay until you go away. After many years they usually will start helping, and of course, this allows them not to pay for several years. Funny story; I got back from Nam and about a year later I had a relapse of malaria. I went to VA and about three months later I received a letter denying my claim saying I must have contacted it in Illinois.

Hang in there and keep adding evidence with each denial and eventually you'll win

[MBAnderson]

I am a Vietnam vet (10/66 - 10/67) with PD from Agent Orange. I was an infantry grunt, spending 25 days per month in the jungle. Prior to my diagnosis, I was designated 50% disabled. I have extensive experience with the VA and have learned a couple things.

The quality of VA health care has nothing to do with the VA claims division. The people who process claims, in my experience, are far worse than any insurance company. I had to get a lawyer to have my original application approved. There is an organization in Cleveland that has a network of lawyers who will work for vets free. Benefits are awarded from the date you applied, not the date your application is approved. In my case, it took two years to get my application approved, but when it was approved, I got a lump sum payment going back to the date it was first filed. Every VA hospital has a patient advocate office and I found them to be very good. Veteran advocacy groups and organizations are also very helpful such as the VFW. I also found our County advocate very helpful.

I get my healthcare from the Minneapolis VA. The healthcare has been excellent. Nothing has ever fallen through the cracks. Every phone call is returned on time. I could not say enough good things about them. I am a do it yourself Nilotinib user and even though it is not on the VA formulary, my primary care physician, neurologist, and psychiatrist, have all provided me whatever test I want whenever I want them. They've done seven EKGs and four blood panels to make sure I don't kill myself.

I understand from talking to a lot of other vets from all over the country that the quality of healthcare varies from different facilities in different places. Too bad.

You are your own best advocate. Yes, it may take time and effort -- in some places more than others. Don't be shy. Trust your instinct. If you're not getting the quality healthcare you want, complain.

I, for one, am very grateful and appreciative of what the VA does for me.

[PDConscience in reply to MBAnderson]

Hi MBA... could u kindly provide the name of that "organization in Cleveland"?

[MBAnderson in reply to PDConscience]

I don't remember the name. it was many years ago. Sorry. We are snowbirds in Florida now for the season and my files are in St. Paul Minnesota, but I sent an email to the lawyer that worked with me asking her and will let you know as soon as she replies. I'm confident she will know.

[ranger6970 in reply to MBAnderson]

thank you

[PDConscience in reply to MBAnderson]

Much appreciated

[MBAnderson in reply to PDConscience]

I got an automated reply saying she was out of the office for a few days. If I don't hear back from her, I'll give her a call.

[ranger6970 in reply to MBAnderson]

thanks for advice- I have been dealing with them for 40 years and have a good idea what they are all about. They seem to be excellent in health maintenance and most specialties. So far I haven't found a way to take my PD seriously, possibly because I have very early symptoms. I filed a claim for PD and within 6 weeks I was approved A NEW WORLD'S RECORD. It is the ongoing care I'm now seeking. BTW spent a year in the jungle around Pleiku and An Khe with LRRPS

[MBAnderson in reply to ranger6970]

I had to change neurologists three times till I found when I was happy with. It may be more due to the individual doctor than the VA. I was in Pleiku probably 6 or 8 times. An Khe sounds familiar, but I don't remember for sure. 25th infantry division?

[ranger6970 in reply to MBAnderson]

Pleiku

hasn't changed much....when we were there it was a city of 20,000 now it is a city of 200,000 people. I went back to VN in 2016 and backpacked through the entire country for almost a month. An Khe was was east of Pleiku on HWY 19 halfway between Pleiku and the coaast. When you say you changed DR three ties was that VA doctors or private.

[MBAnderson in reply to ranger6970]

I went back VN for a month with my daughter looking for closure, but found opener instead.

It was three different neurologist in the neurology department at the VA. The first one was not a movement disorder specialist so I moved on from him quickly. The second one seemed to have kind of a cavalier attitude so I moved on from him too. I'm very happy with number three.

I don't get any of my healthcare from private doctors or clinics. No need to.

[jt12]

MBAnderson,

I’m so glad that the VA takes such good care of you, that’s the way it should be. Maybe I just haven’t given them a chance. This is my first time putting in a claim and I know it takes a lot of patience, time and paperwork to get things rolling, but you’re so right, you are your own best advocate. Thank you for the good info.

[FluteReed]

Some great responses. My PD is likely environmental exposure also. Along with the county rep look up nearby VFW, AMVET, DAV or other veterans organizations near where you live. Most have case workers to assist you. I'm rated 100 percent and get good care.

[ranger6970 in reply to FluteReed]

thanks

[MBAnderson]

Here are two good resources for veterans.

veteranslawblog.org/va-appe...

vetsprobono.org/

[6780]

i think one thing you must do is send a registered receipt requested letter to the president and a copy to your senator detailing this situation. vets deserve better care.

for many years because you get va treatment and cannot just go to any neuro the waits are worse for veterans. washington says they are improving this situation. let them know.

often senators will make a phone call for constituents.