I CAN'T BELIEVE IT! TODAY I HAVE MY REGISTRY EXAM!!! I have not had very good luck in my inquirys about this program, and I have been asking around for two years. Finally I was determined to get to the bottom of this - and this web site has kept the importance of this alive for me. So again I asked several places, even the Disabled American Veterans office on the VA campus. I finally got to the patients advocate. (whom I am not really crazy about going to) He actually said he HAD NEVER HEARD OF THE GULF WAR REGISTRY - but he did know there was an agent orange registry. He said you know what - I'll call. I saw literal surprise on his face when he was told there was such a program. (Imagine if you will not even the patients advocate at the VA hub in my state knowing about the Gulf War Registry . . .) Anyway I was sent over to pick up some paperwork and given an appointment choice of the next day or the day after!!!! CAN YOU BELIEVE THIS!!!
SO FOLKS . . . THIS IS WHERE I FOUND THE REGISTRY AT MY VA - IN THE COMP&PEN RECEPTION AREA. WHERE YOU CHECK IN FOR YOUR COMP AND PEN EXAM!!! RIGHT THERE RIGHT AS SUNSHINE ON THE CHECK IN WINDOW: COMP&PEN, AGENT ORANGE, GULF WAR REGISTRY.
I'll post later how it all goes!
Posts: 484 | From: FLA | Registered: Feb 2007
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I am glad to hear that you have your exam scheduled. I have not dealt with the VA, I am on Active Duty still. I hope that everything goes well.
I do have to say that I am not impressed with the VA and their supposed effort to support Veterans. I believe it is an organization designed under that auspice of Veteran care. Although it has turned into a bureaucratic quagmire of indifference. We have been forsaken by our legislators for pork barrel spending and support for countries all over the world. While at home not just Veterans, but all Americans suffer under a political system focused on power of a party, rather than the greater democratic good of its citizens. Although we must not confuse the fact that we are a Republic, not a true democracy.
I am sorry for standing on a soap box in reply to your good fortune. I hope and pray that good things come from your experience with the VA.
I have just been diagnosed with Parkinson's Disease. I realize that in the near future I am going to deal with the VA and I am not particularly excited about that.
If you have any insight after your visit, please come back here and post what happened. I would love to hear about your experience and sharing that with other Vets might get them motivated to do the same thing you are doing. I applaud you!
*grinning* This is what I've been harping about for YEARS! The VA employees (and even the doctors) know little-to-nothing about the Gulf War Registry or the Environmental Agents Service. I'm so glad you were persistent, and got to the bottom of things. Let us know how your exam goes, Melinda!
I went through EXACTLY what you went through down here in Alabama when I first moved here, Melinda. I asked TWO doctors to refer me to the GW Registry and neither of them even knew it existed! That's why it's SO IMPORTANT to print out a hard copy of what ever you're inquiring about, the VA's own policies on it, show it to the person behind the counter (or your doctor), and take names and phone numbers. That's also why I keep the important laws and policies for everything I can in the Library of Useful Links for everyone to find and use.
I had already been through the GW Registry in Alaska, but the criteria for the exam and conditions had changed since I went through to include exams for conditions that weren't in the initial exam. So, I asked to go through it again to be evaluated for the conditions that weren't included in the earlier exam.
How can the VA, IOM (Institute of Medicine) or DoD come up with any stats on the percentages of sick GW vets when the VAs aren't even directing the sick vets to the registry? If vets aren't getting evaluated, how can they get the treatment and documentation needed for claims? How accurate are the numbers and reports on sick vets? The answer is pitifully simple... They're not!
Dave, please make sure that your medical records reflect your diagnosis of Parkinson's Disease and make copies for your own files. They haven't included PD in the list of conditions for Gulf War exposures yet, but they will rate you for it since you're still on active-duty as being service-connected.
-------------------- HONOR OUR VETERANS WITH BETTER CARE AND BENEFITS Posts: 3482 | Registered: Jul 2005
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Dave, welcome and stick around this site - it will help you. I am still not all the way out - the Air Force is still retiring me (2 years on!) I am in LIMBO - not active, not guard, not out.
While the Gulf War Registry is hard to find - Agent Orange Registry is not. Pretty much everyone knows of it. The Doc that did my exam today - does both. So for those having a hard time - ask for the Agent Orange Registry - they will probably steer you in the right direction. Again, both of these registry's were in the Comp&Pen Exam area - at my VA. Kind of a weird place to look for them, I'd never have thought of it.
Dave - the VA will take some time to get used to. You will run into bad apples. You have to look (or try) to look at the bright side - they really do a lot with what the DOD sends them - we are usually pretty pissed by the time we start with them. I had TERRIBLE first experiences - but have found good care since. It took some time.
I have found (most of the time) if I channel the bad day - bad boss - crappy working environment I had in uniform - and imagine that the person I am dealing with at the VA might be having a bad day, and I attempt to reach into my kind hearted self that still exists down deep inside - and give the person I am dealing with the benefit of the doubt (and this is hard-hard-hard) but if I try: Sometimes the person I am dealing with/or is dealing with me will warm up. There is one individual I actually joke around with and this is not me, but it helps me with this person who then helps me. Other people you will work around. Think of it as the good supply guy - vs. the bad supply guy - can't anyone in uniform relate to that! How you might "butter" the good one.
This is how it went today. I got the brisk doc. I just keep staying in a place of kindness - as in "I am sick - but will be kind" - I remained agreeable and the guy was bearing his own soul to me by the end of the exam. As in how really really sad and worried he is about the "young guys" - and I do believe him.
Had I gotten kind of pissy (which was within my mood and I could have gone there) it wouldn't have gone as well.
The VA gets a bad rap. I won't sing songs of praise because I know some of you have really grabbed the shit end of the stick, and it sucks and is not fair. (Please don't beat me up board friends!)
But the folks there are human too. It is helpful to remember that. Some greasy wheels get the grease, some times shoutin helps, some times humility helps too, thats all I'm saying. (Catch me on a bad day - yep I am shouting too) But the shouting doesn't always help down at the VA. (Hasn't helped me actually, getting mad makes me feel like checking into the psych ward)
I also am learning from my own experience where the Air Force is trying to lie when they put me out about what is wrong with me (with less than honesty) that the VA is left to deal with me without the budget forecast they probably need to do the job. This is a huge DOD problem. Lets remember that when we VA bash - we should be mad at the DOD first off.
DH I will end this on one very important note for you: DON'T ACCEPT A SEVERANCE CHECK GETTING OUT OF SERVICE. The VA can't give you compensation for what you have taken a severance check for until it matches what the VA would have given you. Good luck.
Gayle and Endure, Wow, I really appreciate the info and giving me some insight to what I can expect. I have gotten copies of my medical records from the Army. I now have to get a copy of the ones from UNC, where I have been seeing a Neurologist.
I have also heard not to accept the severance check from the Army when getting out. I think that is a crock. But I am not in any position to change that rule...law...whatever it is.
I also like your analogy of the good supply guy, bad supply guy. I totally get that, because I have had both.
I have to also agree about directing frustration at DOD first prior to barking at the VA. I have just had such a problem dealing with Army doctors and even some of the civilian ones.
I have not posted my story about the trip to Duke Medical Center. Long story short, the doctor told me how he was a pacifist and did not believe in war and unjustly killing people. That the President was a criminal and he just went on and on. After a few minutes of him on his soap box, and with out even conducting a neuro exam, he wrote something down on a sticky note and says "Google search this, thats whats wrong with you." then he stands up and walks out of the exam room. Fortunately my wife was in the exam room too, hearing and seeing the whole thing. By the way, his diagnosis... Catatonic Skitzophrena!!! I was about to shit my self. But my doctors at Womack did not believe that and I went to UNC and you know the rest of the story as Paul Harvey would say.
I thank all of you for your great insight and direction. I plan to stay as active in this forum as I can.
You will notice that the Gulf War Veterans have been shoved to the side for the Iraqi Freedom Veterans. That's how they clear their books while they throw their hands up and keep a sharp eye out on the retirement clock.
cyberhobo, It SO greatly saddens me to see your post! As person in uniform 18 years, who was packed but didn't get called the first time - but who was in the sand the second . . . well I don't even see it as 2 different conflicts we are all SWA theater veterans. When I go to the VA and see the great disparity between we newer vets (and I mean the ones before 1990) I am so relieved when I talk to someone who has been in the "sandbox." I know they are expediting OIF/OEF Veterans - but for those of us OIF vets especially we would not be where we are in level of care IF NOT FOR THE FIRST GULF WAR VETS. From my experience as more and more of us come home with GWI they are sideswiped by the complete and total level of evidence - so that more and more you will see a focus on all of us sick from the sandbox or vaccines. Please despite the wait - get your presumptive illnesses rated - they just can't be in denial anymore!!! You must be aware there is re-newed spending and research going on concerning GW1 and it's signature presumptive illness issues. Please cyberhobo - stick with us OIF/OEF vets we must unite!!! Please realize many vets DID serve both conflicts. I can understand your frustration with the VA . . . but please know what a breath of fresh air it is when a first gulf war vets talks to me down at the VA. I almost get emotional! Please reach out to one of us, we need you guys/gals!!!!!!!
Posts: 484 | From: FLA | Registered: Feb 2007
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I hope that you all don't mind, but I would like to pipe in on this conversation. My creds are, I am a GW1 Vet, I have been two more times to Iraq since 2003. I am an active duty Army Officer. I was recently diagnosed with Parkinson's Disease.
I understand what cyberhobo is saying. Before I go spouting things off. I want to first say that I don't have any experience with the VA. But I can say that I have plenty of experience with military doctors and civilian doctors. I have personal experience in regard to their responses when I say that I am a GW1 Vet. I have been told by doctors, does not exist, or "I know GWI and you don't have it", I could go on, but I think you get the point.
I would like to continue with some thoughts as to why we GW1 Vets are being...oh, how should I put this, forgotten about. I believe there is a dynamic we did not experience in GW1. That dynamic is extensive multimedia. In GW1 there were reporters around and there was a lot of news being recorded directly from the battlefield. That reporting was pretty fast in respect to other conflicts that our society was accustomed to.
Today the information is almost instant, and available on a myriad of mediums. The public is more aware that ever. They are seeing videos posted on YouTube by Service Members, parents and and anyone with a story they want told. People have the tendency to remember the first and last thing they see read or speak about. Not to sound vapid or callow but the flavor of the day is a good analogy to use. By no means am I saying that the current conflict's Vets don't deserve all the attention they are getting. They absolutely do, with out revocation and with utmost respect. The point I am trying to achieve is every Vet should get the same treatment. If that is not happening then it is a product of the system.
Again, I am stating some facts and some opinions. There are still many doctors, lawmakers, and other influential people that believe GWI is an aberration in the mind of Vets. Not a legitimate illness. It is a lot easier for people to associate with someone being shot or missing a limb, because they can see it, then it is to understand all the things GW1 Vets experience.
If any of you think that I am off track with what I am saying please reply and let me know where my though process is flawed.
Endure, this "Storm"trooper and I'm sure the rest of my comrades have nothing but respect for your service in these new conflicts. I'm sure what cyberhobo was referring to was the tremondous mess the VA was in before this war started and a feeling as if your group will now be the priority at these already understaffed, under-budgeted, facilities possibly pushing us and our issues aside. I completely understand anyone having that feeling, though I believe as you that we will compliment each in a way as to force not only the VA but the rest of America to realize that when we answer their call the price the veteran pays is not cheap and in return the price they must pay to care for us after the bombs and bullets can not be cheap either. To every young and old veteran of any conflict it is past time to remain quite about ALL the federal governments shortcomings, we did not sacrifice only to see them ruin this country beyond repair. You OIF/OEF veterans must know the reason they want to give you free college, like we was not given, is they are afraid to many of you will come home to find no jobs, your mother and fathers home where you were raised foreclosed on and sold, they want you to keep your minds busy at the colleges, to keep you quiet. For they fear that your numbers are so great and your convictions so strong in what you believe that you will demand change across this country and throw out the old reps who have bled America dry while they made millions. I envy the power you vets hold to seek change in America and will be the first at the rally cry when and if it comes. They don't want to see a million vet march on D.C. demanding change to old policies while our brothers and sisters are in harms way, demanding that the America they left to fight for is the same they come home to find.
O.K. wow, I got a little carried away. But I meant it and I'll not edit. Sorry for soapboxing or whatever. I just truly feel that we, veterans, as a group if we unite and stand together can do so much for America still. I can't see any other group big enough or more dedicated to country to push for a better way. Keith
Posts: 546 | From: Washington State | Registered: Jul 2005
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Keith - soap box or not - it always good to read your posts.
I really want all you first conflict vets to know - you are never forgotten!!!
We newbies are really just adding lighter fluid to the fire you folks started. At least 40% of us are coming home with the classic Gulf War Illness symptoms. Because I am involved on a Governor's Commission here in Maine I hear things I normally would not. Our second in command VA person (meaning he is the XO) here in Maine is on this commission. He is a GWV - and we are talking about this - and they are talking about this at the National Level.
If this issue (GWI and PTSD) ever went to sleep, you have to believe me: it is getting a very loud wake-up!!!!
Now is the time to stand firm. The presumptive list is long and strong and still active. Look any whack job in the eye who won't acknowledge your reality - and start bringing the VA evidence. If you got burned out by the system, have friends, loved ones, a pastor - write you support letters. Get/Find a compassionate doc and get an opionion physical. The best way to find a doc is word of mouth. AND A SPECIAL NOTE TO ALL YOU GUYS OUT THERE - I KNOW YOU HATE DOCTORS, and I know how pissy seeing a "brush-off" doc can be; but you have got to keep turning them over till you find one that will listen. They are out there. Sometimes they are Nurse practitioners - not MDs. D.O's not M.D.s is another crediable way to go.
I wish all of you nothing but renewed success. We really are all in this together.
First I understand your desire to be heard Keith. I wouldn't call it soap boxing. Your frustrated and want to be heard. Many GW vets won't do that, they just try and get AN answer and move on.
As for the VA, there are some in this forum that are happy with the results and system. As I have stated in other posts, I have not dealt with the VA so I don't have any inside information. I merely observe from the outside through friends retiring from active duty. The dysfunction I have recognized appears in the fact that many Vets have to attain the skills of the AmVets, VFW, or other veteran organization; in order to get claims and all the paperwork filled out. It is obvious then that the process is complicated. I think that is wrong and I believe the VA needs revamping.
I am impressed that your working with a state commission. That is awesome! More vets need to get involved. Very few that have not walked a mile in our shoes will come and toe the line with us. It is our job and I commend you for your involvement at this level.
To your second point about Doctors. In the past eight months, I have seen upward of 15 different doctors. All neurologists, but none of the military doctors were specialists in the movement disorder field. Head trauma specialists for the most part. I was expecting good care at Duke, but rather received a slap in the face due to a doctors personal beliefs and convictions. You are your best advocate. You might not be a doctor, but you know better than anyone else know what your feeling and what is wrong. That is the advice I give to everyone out there dealing with an illness. Don't stop until your satisfied, diagnosed, and getting treatment that makes you feel better. GWI and the spawned illnesses vets are getting, unfortunately, don't have a simple test that can say yes or no. As I am sure you know Endure, working the the medical field. That the diagnosis process is as much of an art as it is a science. Many people don't know that. I have learned that on my journey.
Keith, Endure, I have enjoyed this string of conversations. I hope that we continue exchanging information and knowledge.
Thanks for your words both of you. I had success with my claim, but it was a tough fight. And the VA in that way is dealing me fairly, i believe. But I'm in the higher percentages in that department, and many vets don't see the same results, and thats why I push for reform at the VA.
The health care side has been a good-bad experience. I could afford to go outside the system so if I am unhappy its my own fault for not giving up and moving on, I like the mental health care team I see there and will find a way to make the physical care part smooth out into a working relationship.
So we must work together to try and improve this system anywhere it is found to be lacking.
DH, I hope you have a good transition upon your seperation from the military, please keep us posted. Keith
Posts: 546 | From: Washington State | Registered: Jul 2005
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I appreciate it. Currently the army has not even started board proceedings. I am still going to a civilian doctor at the University Of North Carolina Medical School.
Actually I don't know what is going to happen. My Special Operations Command Care Coalition LNO said they are going to request a COD (Continuation on Active Duty) when board proceedings start. I am not sure if it well even be considered. I have over 16 years now and the thought is to get a service member to their 20years.
Many changes have taken place with the Army's philosophy on how to treat and take care of service members with a disability. Many wounded soldiers are being allowed to stay on active duty with missing limbs, being blind...etc. etc. etc.
So whatever happens, happens. My unit has taken care of me up to this point and I know they will continue to do and make the right decisions.
thanks much, Dave
Posts: 45 | From: NC | Registered: Dec 2007
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