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Everything posted by Gulfvet

  1. Gulfvet

    New to PD - Parkinsonism - SWEDDs or Whatever

    Scott, I was where you are 4 years ago, it took another year to be diagnosed for me. I hope by some miracle that you do not have PD. If you do try not to worry too much time will be the tell all. It took me going to the right doctor who called in three other neurologist, and the better part of the day, going over previous testing, and doing exams, before I received the preliminary diagnosis, reached by the team. The first pill the following morning confirmed the diagnosis for me. I was scheduled with a MDS, who confirmed the diagnosis three months later. That was the years ago, and I now take 8 c/l during the day, and an extended release at bedtime. I am also one of the first few Gulf War veterans to be Service Connected for Parkinson's Disease.
  2. Gulfvet


    Your very welcome
  3. Gulfvet


    PD is a (blue book) condition for SSDI and SSI which is completely different programs. I learned the hard way that not enough work credits within the previous 5 years will prevent you from drawing SSDI regardless of how much you paid in for the years before the 5 year window. SSI was approved the first time I applied. I included copies of medical reports that showed the required symptoms of PD to be automatically approved by SS. I also answered the questions about how PD impacted me. Less than two weeks I received the call telling me that I was approved for SSI. During the two weeks the VA approved Non Service Connected VA PENSION, which is just enough to make one ineligible for SSI but NSC VA PENSION pays twice the amount of SSI. I was approved for Service Connected Disability for Parkinson's Disease a few months later and 3 years to the day from the day I filed my original claim. I will find the link for the SS automatically approved criteria and posthttps://www.apdaparkinson.org/resources-support/living-with-parkinsons-disease/disability/ This discusses it some I hope it helps somehow.
  4. Gulfvet

    Served at Edgewood Arsenal?

    Not other than creating a large number of collective voices loud enough to make a difference. I have not found a way to accomplish this so far, but continue to reach out to others to get involved. I myself did not realize how large the "family" of veterans with Parkinson's Disease is, until I became a member of it myself. I am a moderator for the Veterans with Parkinson's Disease Facebook group, with new members joining daily unfortunately. With the combination of military service being one of the most environmentally hazardous occupations known to exist and with 90-95% of all PD cases at least having some relationship to environmental exposures, it would be hard to not see some level of connection between military service and PD. Unfortunately, the VA does not easily recognize the obvious all the time.
  5. Gulfvet

    Served at Edgewood Arsenal?

    No it typically is not a problem to switch to a new VSO if needed, however please keep in mind that even VSO's are overwhelmed by the current number of claims, especially those who are employees of the State Veterans Affairs. I did not serve at Camp Lejeune, but had in exposure to the very same chemicals as was discovered in the water supply at Camp Lejeune. According to the IOM all Gulf War veterans were, this being published in the 2010 IOM report which was commissioned by legislation. I typically have to go in person to see my VSO and can expect a long line/wait to see her. The data regarding the number of veterans with Parkinson's Disease has been requested multiple times with Congress even passing legislation compelling the VA to publish the data. The IOM requested it as well especially in regards to PD, however it has not been published that I am aware of. I will add that even the latest volumes of the IOM Gulf War Health clearly indicates that Gulf War veterans will have to reach 60 years old, before they should be highly concerned with PD. This basically provided the VA a source of denial of GW PD claims for years to come. I will add that the IOM has been renamed/restructured since the last of ten GW volumes and the Camp Lejeune assessment, which caused the creation of the Camp Lejeune presumptive service connected conditions for 7 adverse health outcomes of exposure to TCE and PCE solvents found in the water supply, which Gulf War veterans were exposed to as well. I was able to use a combination of all reports to establish my service connection.
  6. Gulfvet

    Diagnosed with PD on 46th birthday

    Thank you for your service, I too served, USAF and two tours in the Gulf in the years just following the 90-91 war, i.e. NO FLY ZONES, it was the Camp Lejeune water supply contaminants that are also known to have been shipped to the Gulf, TCE and PCE solvents, that is cited in my Service Connected Disability award letter as the more than likely cause of PD. However the very long list of other toxins associated with the Gulf War can/could not be ruled out and is listed as the cause of my PD symptoms. Which is rated at 100%, while PD garners only 30% by the VA. I made it to 40 before diagnosis. But as a member of a Facebook group, veterans with Parkinson's Disease, we have many other extremely young veterans joining all the time. Makes one wonder what they are putting in the water, at least?
  7. Gulfvet

    Served at Edgewood Arsenal?

    Hello, I was not even born in those days, however I have served U.S. Air Force, in the middle east and recently approved for Service Connection for Parkinson's Disease with the leading suspected contributing environmental toxin exposure being Trichloroethylene TCE and tetrachloroethylene PCE, which was found in the Camp Lejeune water supply. If I can help you in anyway possible in your claim process let me know. The biggest single piece of advice I can give anyone considering a claim for Service Connected Disability is DO NOT attempt to do so without a good Veteran Service Officer. Much like medical professionals, not all VSO's are the same, and using criteria similar to that you would use to rate a medical professional will be a good guide to help you find a good Veteran Service Officer as well.
  8. Gulfvet

    Gulf War Veterans with pd.

    To receive Parkinson's Disease Specialist care within the VA, you can look at www.parkinsons.va.gov
  9. Gulfvet

    Gulf War Veterans with pd.

    I have finally been approved for Service Connected Disability for Parkinson's Disease due to environmental exposures of TCE and PCE. Three years to the day since I filed my original claim. Rated with retroactive benefits, Rated @ 100% permanent and total, for the past year, and @ 30% for the previous two years. I will have to file for an increased initial rating, which is estimated to take three to four months to get approved. Here is a link to the research used to rationalize the Camp Lejeune Presumptive Service Connection Disability for Parkinson's Disease due to TCE and PCE https://m.facebook.com/story.php?story_fbid=224460021429731&id=224446114764455
  10. I have always heard that an ounce of prevention is worth a pound of cure. The purpose of this DOD funding is for the evaluation of the capability of the Burn Pits used by DOD as a means of waste control in combat locations. And a direct result of the rather large number of veterans who have a concern of the adverse health outcomes of the exposures of the Burn Pits. Due to my own deployments in the Gulf War zone, I know everything including the kitchen sink is thrown in the Burn Pits. This even includes things such as solvent soaked rags used in the repair duties of our highly mechanized military equipment. One of which is a solvent trichloroethylene, commonly known as TCE. This solvent is the same solvent that was associated with Camp Lejeune veterans with Parkinson's Disease. The National Academy of Sciences and the CDC, subcommittee ASTDR, concluded that the medical and scientific evidence of the capability of TCE is sufficient to warrant service connection for PD. The mysterious adverse health outcome of the Gulf War, commonly known as Gulf War Illness, is defined as a cluster of chronic signs and symptoms, with no known etiology. For those on this forum I know that you can see the undeniable similarity between this definition of GWI and PD. Parkinson's Disease has been a highly anticipated future increased prevalence of PD among Gulf War veterans. This being the conclusion of the GW Research Advisory Committee, or RAC. The RAC has been steadfast in the suspicion of Parkinson's Disease ever since. Being that I have GW Service and YOPD, I have read every piece of research available regarding GWI and PD alike. I have to say that after reading this research and the associated signs and symptoms of both, I find it extremely difficult to distinguish between the symptoms of GWI and PD. In fact even the discussion of the capability of TCE to cause PD, in regards to Camp Lejeune, specifically determined that the neurological signs and symptoms, described by the Institute of Medicine, or IOM, as published in the Gulf War IOM vol 2, Chapter 7, can be PD. However in subsequent IOM reports the conclusion has been that until the Gulf War veterans are at least 60 years old, we will not be impacted by Parkinson's Disease. Everyone on here knows differently. The emerging research for GWI and PD, appears to me to be headed toward a crash course at a rapid pace. The GW IOM vol 2 APPENDIX D, is the DOD confirmed list of known toxins associated with Gulf War Service. This list includes TCE and all of the same toxins associated with Camp Lejeune as well. The VA website specifically states that "MANY" US Military members are routinely exposed to these as well. TCE is a solvent cleaner/degreaser. This indicates that "MANY" veterans have been exposed and are an increased risk of developing PD. I have been able to establish contact with many other veterans who deployed to the GW, and have a confirmed diagnosis of Parkinson's Disease, as well as even active duty military members, who are currently in the process of being discharged from the military for PD. The common denominator being TCE exposure. This to me indicates that TCE is the Agent Orange of our time. The military is not the only source of TCE exposure according to the ASTDR, who has the responsibility of determining the health outcomes of the 1900+ super fund sites, of which TCE has been identified at over 1100 of these sites. Although I and many others have made the connection between in service exposure to TCE and PD, the VA has routinely denied service connection disability for PD, except for the Camp Lejeune veterans. This is a blatant systemic discrimination against those who have not been afforded the same "Honor and Care" as the Camp Lejeune veterans. The VA PD CONSORTIUM CENTER, a speciality clinic within the VA health care system has determined a set of criteria for proving a toxin causes PD. Many of the toxins associated with Gulf War Service fits the criteria for proving toxic induced PD. I have submitted a proposal for new legislation regarding the VA and PD. To the dismay of Secretary Shulkin, if this legislation becomes law it will open many doors for service connection, as well as potentially increase the DOD/VA funding for PD research. I ask that if you feel like this is a worthwhile cause you would like to support, please call your legislative representatives and ask them to work with the staff of US Senator Kennedy, US Senator Cassidy and US Congressman Johnson. Here is a link to the proposal with the links to much of the information I have discussed. https://myjourneywiththeva.blogspot.com/?m=1
  11. Dr. Okun, As always thank you for your effects concerning PD, and your willingness to share your expertise on the matter. I would like to ask your opinion on my thoughts concerning PD among GW veterans. As per the IOM vol. 10, PD is an age related disease. We both know that PD typically manifest at or near the sixth decade of life, but earlier in some cases. If I recall correctly, in a discussion i belief here on NPF, that everyone if they lived long enough, would eventually develop PD due to the natural progression of loss of dopamine producing neurons, with the natural aging process. To me this indicates that even later in life PD manifestation is indicative of an aggravated beyond natural progression, loss of dopamine producing neurons. This could be due to environmental exposures and or combined genetic susceptibility, but either way still aggravated beyond natural progression. As the title of this post indicates, I highly belief that the neurotoxin exposures associated with GW service resulting in the neurobehavioral effects described in the IOM vol 2, GW health assessment starting at page 350, which includes not only the "cardinal symptoms" of PD, but almost all of the known PD symptoms as well, that PD and what is commonly known as Gulf War Illness is one and the same. Recently the Solvents, TCE and or PCE, were highly associated with Parkinson's Disease, as per NAS and ASTDR conclusions. So as for the criteria set forth by the VA, in which any circumstances in which a disease is aggravated beyond natural progression, can be considered Service Connected. Is it appropriate to conclude that any exposures, specifically proven or accepted as such, to target dopamine producing neurons, has aggravated beyond natural progression the loss of dopamine producing neurons.
  12. Gulfvet

    Biggest Unanswered Questions in PD

    My biggest question concerning PD at this time is, "Is TCE, trichloroeythlene the Agent Orange of the post Vietnam era"?
  13. Gulfvet

    Just diagnosed at age 40

    For me the most painful issue is the dystonia. I have never been one to take pain meds, but the dystonia had me asking for something. I saw my MDS a few weeks later and she optimized, (upped) the C/L. And told me to optimize PD meds first then look for other causes. If you have just started the PD meds it can take a little time to get it all adjusted for your correct dose and even which meds work best for you. Welcome to the club though, and remember what works for others doesn't work for everyone. And nobody else has your PD, although we all share similarities. This is one of the best places on the internet for information and suggestions.
  14. Gulfvet


    I am a few days late on this topic but here is my way of saying thank you for your service fellow veterans, Urgent call to action. As of today I pledge to no longer remain silent on the matter of 22 a day I believe the mission statement of the Department of Veterans Affairs, to be empty of meaning and lacking sincerity as was intended and or implied by the words, Mission Statement To fulfill President Lincoln's promise “To care for him who shall have borne the battle, and for his widow, and his orphan” by serving and honoring the men and women who are America’s Veterans. I also believe the words spoken on 11/16/2017 by the newly appointed Director Richard Crockett, of Overton Brooks VAMC, to be full of truth and power and as follows, “Veterans have one of, if not the most powerful collective voice, we just simply have use it”. I also believe that the majority of all US Citizens have the highest of expectations of the Department of Veterans Affairs to fully and completely meet this mission to the best ability possible. Together we can hold the US Department of Veterans Affairs accountable for this matter. I ask sincerely that you take a moment to say as loudly as possible 22 veterans a day deserve more. I have outlined a Whitehouse.gov petition to ensure every single VA medical center have available walk in mental health clinics during all available hours of operation. If Overton Brooks can do so, so can all of the others. I ask that you take a moment and share, tweet, email, call, and spread the word. Sincerely, Fellow veteran. https://petitions.whitehouse.gov/petition/thanksgiving-veterans-care-act-2017
  15. Dr. Okun I have seen some evidence that the Outcome Project, could be very helpful in laying down the ground work for establishing different phenotypes of PD. Do you know if the suspected causation factors are being considered at this time? I strongly believe that this could be very instrumental in the future direction of PD research. For example I strongly believe that exposures to toxins are attributable to my PD. This very well could be a possible explanation for the of increased prevalence of certain signs and symptoms associated with PD. While genetic or other factors increase prevalence of other attributes.
  16. I honestly feel like the words of my dad, "Oh get up, i've had worse than that in my eyeball" coupled up with the "Soldier Up" mental conditioning of US Military service. Along with my grandpa always saying "Doctors bury their mistakes", (no offense intended). Helped me to go another five years after knowing something was not just right. My military training in the heavy equipment mechanic field taught me that little quirky issues will either work themselves out or get worse. Then the first doctor appointment came along with a couple of medicines taken with blind faith, which I will never do again. Then four months of every doctor saying ALS, to walking out of the Dallas VAMC with C/L on the day I was supposed to be confirmed with ALS and referred to the ALS CLINIC. My philosophy of the huge algorithms of life with PD management is. No matter how good or bad today is it could be worse, and most likely a day will come when you will be glad today was not as bad as your best day will be. Life is what you make of it, you are in charge and regardless of what works for someone else, the thing that matters the most is what works for you. The choice is yours to make.
  17. Gulfvet

    Just diagnosed at age 40

    The reason why we were chosen remains unknown. The only plausible explanations or factors are, environmental exposures, genetic susceptibility, and age. I have no known family history, and since I am only 42 now it is reasonable to conclude that environmental exposures may very well have been a major factor in the manifestation of PD. The National Academy of Sciences, (NAS) and the CDC, subgroup ASTD, recently evaluated the medical and scientific evidence that the chemicals TCE and or PCE, is capable of causing PD, and concluded the evidence is strong enough to warrant VA Service Connection for PD due to such exposures. These same chemicals are also associated with Gulf War Service as components of the toxic soup Gulf War veterans were exposed to. These solvents are typically found in cleaners and degreasers. I have a campaign ribbon with an oak leaf cluster indicating two tours in the GW Zone. A total of nine months serving as a heavy equipment mechanic using degreaser daily. According to the MDS this more likely than not contributed to my PD. The natural aging process includes a loss of dopamine producing neurons as well as other pathological findings, some estimate that to be between 5-8% per decade. Dr. Okun, recently stated that this would be extremely hard to actually determine. The genetic susceptibility factors are estimated to represent an estimated 5-10% of all PD cases. This being determined by multiple members over multiple generations within the same family who have PD. The currently recognized genetic factors are also present in members of the same family who never develop PD, therefore most believe, "genetics loads the gun, and the environment pulls the trigger". This is of course merely my own lay persons assessment of the research I have reviewed.
  18. Gulfvet

    Just diagnosed at age 40

    Welcome to the club in which only a few have the privilege of joining. The best advice I could give a person just diagnosed, is the same thing my MDS at the DALLAS VAMC, gave me. Stay active, don't overdo it, and me telling you, that you have PD today doesn't mean that you have a new condition. In fact you have had PD for a long time so nothing has changed. Just learn to live one day at a time and listen to your body and discover your own algorithms for managing "your" PD.
  19. Gulfvet

    Gulf War service and PD manifestation

    Yes, a lot of hard to answer questions as per National Academy of Sciences, Medicine and Engineering,(NAS,) and the CDC, subcommittee, ASTDR, The VA has in January of this year, agreed to the recommendations and created Presumptive Service Connection, for TCE exposure via Camp Lejeune water contamination. Just FYI. I guess the biggest question would be if it is considered as estimated, 5-8% of the dopamine producing neurons within the basal ganglia, are believed to be lost per decade of life naturally. I believe it was somewhere here on NPF, that I once read, the analogy that everyone would eventually develop PD if they lived long enough due to the natural aging process.
  20. Gulfvet

    Gulf War Veterans with pd.

    Here is the link to rating information. https://www.hillandponton.com/camp-lejeune-presumptive-conditions-parkinsons-overview-va-ratings/
  21. Gulfvet

    Gulf War Veterans with pd.

    Pdmanz the dignosis of PD alone which is rated as a paralyzing antigen under 8004 of the rating scale of the VA, is 30%. But all residual signs and symptoms are to be added to that as well. This would include the adjustment reaction to PD, as a secondary for another 30%, plus a rating for each limb effected, olfactory deficits, if you do not receive 100%SC some messed up. Hill and Pontoon has published a report on this matter, and I would suggest reviewing it and discussing it with your attorneys.
  22. Gulfvet

    Gulf War Veterans with pd.

    Pdmanz, did your claim for Camp Lejeune, go to the specific RO, I believe in South Carolina, who was specifically tasked with handling all of the Camp Lejeune claims?
  23. Gulfvet

    Gulf War Veterans with pd.

    If your Tbi is service connected PD is presumptive service connection secondary to TBi, unless you are claiming environmental exposures, then it gets much more complicated. I have been fighting since 12/2014 including American legion, congressman senators and the state of Louisiana department of veterans affairs. I have a blog set up at www.myjourneywiththeva.blogspot.com that may show some of the battle I have gone through so far. The biggest challenge with va claims is the wording of the claim itself. There is also a group on FB called veteran to veteran that has a tremendous amount of support for filing claims. If i can help in anyway I will, but unless you fit one of the presumptive service connection conditions it is almost impossible to obtain service connection, even with all the evidence, and a doctor's opinion supporting service connection, because the vba typically uses C&P N.P. who usually has no specialized training and almost always opposes service connection.
  24. Gulfvet

    Muscle weakness?

    Grip strength has always been identified by the multitude of the VA doctors, in my case. All with varying determinations be as vast as the number of treating providers. But in my opinion my hand grip strength would best be described in the context of the degree of rigidity or stiffness at the exact moment of the evaluation. And this varies greatly as does almost all of my PD symptoms, due to the complex algorithms of PD management.
  25. Gulfvet

    Gulf War Veterans with pd.

    For all veteran PWP, I recently underwent a VA hearing for service connection for PD due to environmental exposures. Although there are some presumptive service connection conditions established, such as Vietnam, Camp Lejeune, and TBI, that leaves many veterans out. Using, 38 CFR 3.303(d), whereas any disease or diagnosis post service can be considered Service Connected, if it is supported by way of, a medical nexus statement or opinion. In lay terms as per NPF, and others the human body due to the natural aging process will experience a natural loss of dopamine producing neurons. And if we where to live long enough, everyone would eventually develop PD. This would be considered the natural progression of Parkinson's Disease. As set forth in the law above the condition either has to be caused by or aggravated beyond the natural progression of the disease. So any development of PD even at the age of the sixth decade of life, would be considered an aggravated beyond natural progression, meaning with proof of any environmental exposures while in service, known to specifically target dopamine producing neurons, the VA cannot rebut or deny service connection. The VA would have to establish beyond all reasonable doubt that not one single dopamine producing neuron was lost prematurely due to environmental exposures while in service. TCE and or PCE are ingredients often found in cleaning and/or decreasing products, such as Brakleen 05089. These chemicals are the ones associated with the Camp Lejeune presumptive service connection. These same chemicals are also identified by GW research as known solvents used in GW service, specifically in IOM Vol. 2. As well as being attributed to the causation, or associated with the neurobehavioral effects of GW service, many of which are also known as the "cardinal symptoms" of PD. The National Academy of Sciences, recently determined that the neurobehavoral effects described by NRC, IOM, and others can be PD, being that the NAS is the parent entity of the others, this is very significant. The VA website list TCE and or PCE as the solvents many veterans were exposed to in service. But any neurotoxin specifically targeting the dopamine producing neurons will suffice. I would also like to disclose that I am very aware of the effects of the injuries sustained in connection with military service, and in no way mean to discredit those. But at the same time understand that the injuries sustained by way of the toxic chemical molecules while in service are as equally devastating to the human body, as those bombs and bullets are as well.