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Topic Vietnam vets with PD Go to previous topic Go to next topic Go to higher level

By jsmitch On 2009.12.31 08:06
A ruling, expected to be published soon by the Veteran's Administration, will make almost any veteran who set foot in Vietnam, and is diagnosed with Parkinson’s disease, B cell leukemia or ischemic heart disease (known also as coronary artery disease), eligible for disability compensation and VA medical care.

Obama's VA Chief Shinseki said he basing his decision on work of the Institute of Medicine (IOM) of the National Academies. The VA contracts with IOM to gather veterans’ health data and investigate links between diseases and toxic herbicide used in Vietnam to destroy vegetation and expose enemy positions.

In a speech last July, Shinseki, former Army chief of staff and a wounded veteran of Vietnam, expressed frustration that “40 years after Agent Orange was last used in Vietnam, this secretary is still adjudicating claims for presumption of service-connected disabilities tied to its toxic effects.” VA and the Defense Department should had conducted conclusive studies earlier on presumptive disabilities from Agent Orange, he suggested.

I have to caution, the operative word here is "eligible." There are factors which could affect getting a claim approved. But for those of us exposed to Agent Orange, this is long overdue.

By Lotsapies On 2010.07.10 19:18
Here is a forum for vietnam vets and agent orangethat is up to date on the current bills:
http://groups.yahoo.com/group/vets_parkinsons_agentorange

By hubb On 2010.07.11 19:47
My PD spouse is a Vietnam vet - we have gone thru our local DAV office & filed the papers necessary - there sure are a lot of hoops to jump thru, enough almost to discourage you but we have persevered. However, the Senator from Virginia, Jim Webb, has put a hold on the whole shebang - he thinks that a lot of the health problems connected to Vietnam, especially the Parkinsons and the heart disease, are mostly due to old age and he wants Secy Schiskinski to explain how he came to issue this new directive, so from what I read on internet & newspaper, everything is on hold until Oct. when Sen. Webb is going to have hearings. My husband served in the Navy for 30 years, most of those years were spent at sea so we have had more than our share of deployments, and now when they offer perhaps a little relief - not more money, just relief from income taxes actually, then some person in Congress decides to put a hold on it - and he's a Marine - started to say ex-Marine but quickly realized there are not ex Marines because you're a Marine for life, but I just wish he could see this husband of mine being taken from a vital hard working man to just a semblence of what used to be. If I sound a little teed off, it's because I am.

By karolinakitty On 2010.07.11 21:41
Hubb .. i understand your struggles ... perhaps Sen Webb should SEE your husband.... If you feel up to fighting the issue ... one group you can try to get in touch with is the Wounded Warriors Org. I have done some work with these guys and while their focus is those wounded in battle they still fight for things for these guys and know the who's who to contact.
I agree with you that those in congress need to actually see those who suffer from this disease in order to understand it.
Old age huh? Mines only 53 perhaps he needs more statisitics. He probably has read some of the studies that i too have read where it shows the participants being 65 and older. So therefore he associates it to old age and nothing else. BLinded by studies and theories and not realitites.......

By karolinakitty On 2010.07.12 11:17
Hubb ... i sent this letter this mornign to Senator Webb.....now i don't know how far it will go, but, i did get attention on our disability issue when i wrote my senators and reps about it. So much so they sent his case to the main legal office in Mississippi. So lets pray it falls on good ears. I also plan to write my Senators in regard to this so they can hopefully pass info on to him........

Dear Senator,
It is my understanding that you are questioning whether those who have served this country, and have been affected by Agent Orange have Parkinson’s Disease because they have been exposed to the Agent or whether it’s just “old age”.
Now, I don’t have a loved one, who served back then, but I do have my younger son in the Army who just came back from Iraq. However, I do have a loved one that has Parkinson’s Disease. He is 53. Now in my book that is not “old age”. Life expectancy for males today is 75.6 years, females 80.8, so 53 is still almost a quarter of a century left to his life span.
My loved one has had PD, they guess, for about 5 years. He was only diagnosed about 2 years ago. Mostly due to the fact that he was deemed uninsurable, due to a head injury, and we could not afford insurance or get to a specialist sooner. That is another story and another bill, so I digress. As with any life altering disease, we were devastated. We went through all the emotions and now are at the point where we plan to live life to the fullest, and take one day at a time.
During our first months and continuing through today, I have read almost everything there is to read about Parkinson’s. Yes, I have learned a lot. Yes I have doubted a lot, but most of all, I too, have drawn my own conclusions about this disease. Nobody really knows the “why’s” or “where’s” of this disease. There are studies all over the map from genetic to chemical, head injury to old age. I understand your doubt. However, making a study and wasting time, is not in the best interest of these men and women. They need the help NOW, not in months or years.
There are many organizations that assist PD patients in the knowledge of the disease, in the research area, but, only one I personally know of that helps financially. That is the HollyRod Foundation. In all the research I have done, including the Michael J Fox Group, they are focused on research and the cure for this disease. In all the studies I personally looked at they deal with a study group ranging in ages from 65 -80 years. Why? That is the most common age group. There is YOPD or Young Onset Parkinson’s Disease that affect those 35 to 45, some go to 50, but most common is the older age group. In tracing a medical history or tracing symptoms, we can go back 5 years to about 47 when things first started happening with my loved one, as I’m sure those Vietnam Vets can go back and trace their early symptoms to an earlier age.
Probably, like most folks, you think Parkinson’s is the “shaking” disease. Well, guess what? It’s not just about tremors. Have you ever visited someone with PD? Have you ever spent a few days and nights with a PD patient? Perhaps you should. This would give you a clear cut view into the pain, cognitive issues, obsessions and about 100 other different things these folks go through on a daily basis.
The side effects from the drugs are menacing and each caregiver doesn’t know whether they are coming or going at times. If you can picture this:
Each day and night you are in constant motion, whether physically seen or not. All your muscles and nerves are on the edge of their seats all day and night. It would liken to you riding a stationary bike and juggling balls 24/7. That is just the physical part. The mental part of the disease can throw you for even a bigger loop. There are PD diseases that have moderate to severe dementia. Not from old age I remind you but from the disease itself and the drugs you need to “live”. As an example, I use my loved one who is only 53 years old and has moderate dementia. What a struggle it can be at 70 let alone 53. Your are to be at the top of your game at 53 not slipping away to some unknown world where you don’t remember what day, month or even year it is. I tell you this, not to have sympathy for my guy, for he doesn’t want that, but for you to understand it is not an “OLD AGE” disease.
Yes, Michael J Fox has YOPD, and brought it to the forefront of the people. However, not all folks have access to the care that he does. Not all folks have the same symptoms as he does. This is not glamour nor stardom for the rest of PD patients. There are no “real” statistics available, no real case studies, but from those I have spoken with and those I have forumed with, lots of folks go through hard financial times throughout this disease.
The drugs alone are expensive. I can only go by what my guy takes, but, without insurance, his PD meds alone are over the $500 mark each month. No assistance from the drug companies and too many assets for Medicaid and even through Medicare Part D, I found only 1 drug company that accepts his meds. There are so many more out there who are like this. Many get hit hard with finances just due to side effects of the drugs. The big three would be obsessions with gambling, shopping and porn. There are many who have lost their homes they have lived in all their lives due to these obsessions. Can they help it? Sometimes it is too late. The damage is done. It is the role of the caregiver to watch for signs and check up on our loved ones like they were small children to keep this tragedy at bay.
I urge you to google any PD caregiver or patient websites, some, like the one I belong to, have open forums you can read without joining. It is shared by caregivers and/or patients who need somewhere to turn. Not all folks have access to support groups, so these forums help them get through their daily lives.
Read and study up on the “reality” of this disease besides reading medical studies and statistics. Find a Parkinson’s patient and visit with them a few days and get the real picture of life as a PDer. Then get this VA bill taken care of so our folks who have served this country can live out their lives as best as they can under the circumstances.
Thank you so Much for your Time

By hubb On 2010.07.12 16:15
Well done, KarolinaKitty - good letter and thanks for your support. I can tell from your various postings that you are a scrapper and will fight for what's right. I have just about given up writing any Congress person anymore - and lots of them don't want to have town hall meetings when they are home so you can talk to them personally instead of some aide in their offices who just files most things in their"round files".

By jsmitch On 2010.07.12 19:54
Not to stifle creativity here, and I am not taking a stand, but Senator Webb's position is not quite how you described it in your letter.

What he did was ask the VA to provide supportive documentation that specific conditions are directly attributed to Agent Orange as opposed to the normal course of aging. The diseases to be added to the list of presumptive disease of Agent Orange, in addition to Parkinson's are Ischemic heart disease and B-cell leukemia. If approved and funded, Agent Orange claims will jump by $13.6 billion in a year and by $42.2 billion over 10 years.

Did you know that there are 260,000+ vets drawing partial disability for type 2 Diabetes? That condition was added to the list back in 2001.

Senator Webb is actually one of the good guys, looking out for Vets and the taxpayer -- a difficult task at best.

Jim


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