In 2013 I received a diagnosis that changed my life. I have Parkinson’s disease (PD). For those of you that don’t know much about this disease, I would recommend the Michael J Fox foundation site at https://www.michaeljfox.org/. There is no cure for PD and not everyone with the disease gets all the symptoms but even though Parkinson’s itself doesn’t kill you it can sure speed things along. When people find out I have Parkinson’s I always tell them it’s a “Damn Inconvenient Disease” to have. Famous people with the disease (other than myself and Michael J. Fox) include Mohammad Ali (who passed away last year from complications of the disease), the comedian Robin Williams (Who committed suicide rather than face the disease), Charles Schultz (of Snoopy Fame), the British actor Bill Connolly (who had to stop playing banjo after he got the disease), The singer Neil Diamond and most recently Alan Alda of MASH fame. Parkinson’s can be debilitating causing motor problems, shaking, depression, and a whole host of other issues but as I mentioned not everyone gets all the symptoms and this makes it very difficult to diagnose until it enters its advanced stages.
The event that prompted me to discuss this issue on my blog is the news I received last month that my Air Force Buddy Fritz (last name deleted) called me to let me know that he has been diagnosed with Parkinson’s as well. Fritz and I were best friends in the Air Force and were stationed together in North Carolina, Germany and Thailand between 1971 and 1975. The picture below is Fritz and I in Germany a few months before we both rotated to Korat Thailand during the Vietnam War in November of 1972. (I am in fatigues and Fritz is in Civvies on the right).
Although researchers are not positive regarding all the possible causes of the disease, there are studies that show a strong correlation between harsh chemical exposure and the disease. Fritz and I both worked as aircraft electricians on the flightline and we both also worked in the base battery shop. Starting in about July of 1972, several months before we both went to Thailand, the Air Force started spraying agent-orange outside the fence at Korat to keep Viet Cong sympathizers in Thailand from taking pot shots at those like us working unprotected out on the flightline. Each month the empty 50 gallon barrels from the Agent Orange spraying program were brought to the battery shop for us to re-use. We filled them with battery acid and soda water, by-products of the work in the shop of keeping aircraft supplied with fresh lead-acid batteries.
My friend Fritz now lives in Colorado and is going through the miserable task of applying for disability from the Veteran’s administration. Although the fact that the Air Force had long admitted to the use of rainbow defoliants around its bases in Thailand and other areas, it is almost impossible to win a claim because some Air Force personnel never stepped foot in Vietnam. I am one of the lucky ones that could show that I was at Da Nang, Vietnam before I was shipped to Korat, but others like Fritz still struggle to find any records from over 40 years ago that would substantiate their claims. It’s hard not to be bitter when I see Veterans of more recent wars receiving disability seemingly automatically for a wide range of “potential” issues that could result from their service even before they show any signs or symptoms. Don’t get me wrong. I love the fact that veterans are finally being given some respect in this country but it seems that those of us that volunteered to go to Vietnam and fight in a very unpopular war are still being treated as second class citizens. (I still remember the Hari Krishna dancers taunting us as we returned through the San Francisco airport and yes…I was actually spit on and called a “baby-killer” while I waited to find a flight home to Florida. It was 1973 and hairstyles for young men were generally long so those of us with our “high-and-Tight” haircuts stood out like beacons in the crowds at the airports so we couldn’t hide.)
Sometimes I think that our Nation would just like those of us that served in the Vietnam war to quietly go away because they are still embarrassed by what some have called the first war that the US ever lost. It will eventually happen. Those of us that were in that war are now mostly in our mid 60’s to early 70’s but isn’t it time that this country stopped treating us differently? Win or lose we were no different than any volunteer in this decade. We loved our country and wanted to defend her. Vietnam was one of the first wars where you could sit around your TV at night and watch the fighting as it took place (imagine…there were only 3 TV channels then). I think it really took guts for young men and women to volunteer after watching scenes of jungle warfare night after night with an enemy you couldn’t see and scores of wounded being carried out of the jungles on stretchers. In fact the mounting death toll was a statistic that was quoted almost every day in the press.
My Point is that my friend Fritz, and thousands of others like him from the Vietnam era who are just now experiencing the physical after-effects of the war should not have to struggle to be heard at the VA. We have had to deal with the mental anguish of fighting in an unpopular war for over 40 years. Isn’t it time that America (and the VA) forgave us for doing our duty?
Dr. Andy
BRC CEO and CTO, Former Sgt. USAF 1971-1975, Vietnam Veteran,
“Cognitive Psychophysicist with an interest in almost everything”
FOOTNOTE: It was suggested to me by a very astute employee that I add a sentence or two each time I add an article to the blog to highlight one or more of our most pressing current open hiring requisitions. These can be found on the BRC website at www.brc2.com. BRC Employees that refer someone that is hired to fill one of these open positions will receive a minimum referral bonus of $1000 (after tax). Here is today’s featured open position:
Decompression Software Engineer
Job Code: 18-NEDU-005
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This position is in support of the full-time on-site non-personal services computer software developer support to the Decompression Research Team of the Navy Experimental Diving Unit (NEDU), Panama City, FL. This position to support a one-year effort.
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Bevilacqua Research Corporation. is an equal opportunity employer Minorities/Females/Disabled/Veterans and VEVRAA federal contractor. We recruit, employ, train, compensate, and promote without regard to race, color, religion, sex, national origin or any other basis protected by applicable federal, state or local law.
I am coming at this topic from a somewhat different angle but would welcome any comments.
I served in the Peace Corps from 1984-1986. My country of service was Sri Lanka and a major part of my time was spent in a war zone in the northeast of the country. My Parkinson’s symptoms
first became evident around 1990 and I was diagnosed with PD in 1996. I feel like I can make a pretty good circumstantial case of having been exposed to DDT or chlordane, both of which were used by the Lankan army as part of a 30 year long civil war against Tamil “insurgents.”
Without going into too much detail, over the years PD has cost me my job and tens of thousands of dollars in completely out of pocket medical bills. Unlike what seems to be the VA’S pretty open-minded consideration of the connection between environmental toxins and development of neurological conditions like PD, the Peace Corps has shown little or no inclination to address this entire issue.
Given all the obvious difficulties with my circumstances, including the time factor, I’m left wondering whether filing some sort of FECA claim is worth all the pounding my psyche will take as the whole long, soul killing process unfolds.
slapdasch 2
DAVID
FIRST-thank you for your service. This certainly is a different angle…one I had not considered before. FYI you are only the second person with Parkinson’s I have spoken to–the other is my friend Fritz whom I spoke about in my blog post. I get VA disability but the checks are very small and although they are appreciated they dont do much to defray the real cost of this disease. As you know, once we are diagnosed we are not eligible for long-term care insurance which leaves the burden of our care to our loved ones. They are the ones that bear the cost of our disease and the disability checks could never cover those costs. As you probably know the Michael J Fox Foundation is politically active in this area. Have you been following their efforts or asked then about the Peace Corps issue?
Andy
Hi Andy,
I’ll start by thanking you for your service as well.
You are right to acknowledge the sacrifices and difficulties faced by the family members and friends who help those with PD to cope. And I realize that the disability checks you get don’t amount to any chance to end up on easy street.
A couple of thoughts on PD in general:
1 It’s a weasel-like disease that doesn’t play fair. Just when you think you have a handle on symptoms and such, some out of the blue, new evil clunker comes along to mess things up.
No, the condition in and of itself isn’t a death sentence, but what the doctors often don’t mention is the fact that it is a life sentence.
2 Every time you hit the pharmacy, the druggist says the same thing: “I’m afraid this new medication is a little more expensive than what you’ve been taking.”
3 A typical visit to the neurologist seems to be made up of, “Tap your feet ten times, tap your fingers ten times and leave 500 dollars at reception on your way out.”
4 My take on getting PD is that the whole thing is a kind of cosmic joke. It’s not your fault, you just kind of won the wrong lottery.
I could get into a whole long thing on the difficulties of dealing with Peace Corps and FECA, but I’m sure you’ve had your own compensation struggles with intractable bureaucracies and don’t need to hear more.
Some philosopher once defined intelligence as, “The extent to which you accept things as they are because they have to be the way they are.” If the statement is accurate, I may be getting smarter every day.
slapdasch 2
Everything you say is true–I just had my first hospital stay for Pneumonia which I found out afterwards is one of the “Nice” presents that comes with this disease. I hold out hope for a cure but in the mean time all I can do is help others that have the same hassles with the VA that I had when I filed my claim. So far I have been able to help 2 vets directly to get their claims through and I posted my redacted claim forms to a vet website where hopefully others will be able to use the information and references I collected to make things easier. I have no specific knowledge of the Peace Corps so I cant help but hopefully by posting this conversation others will become aware of this issue. I will also pray for you specifically. I am a strong believer in the power of prayer and I remain “Eternally Optimistic” regarding our conditions and an eventual cure in our lifetime.
Andy
I was diagnosed with pd at the wilkes barre pa va 2 years ago I am just starting to get complication like picking up speed when I go out for a walk and falling down quite a bit my feet and right knee also hurt quite a bit I have been going to a best western swimming pool and walking in 3 to5 feet of water 5 days a week but it doesn,t seem to help much I am afraid I am in for a very long life but I will never give up a good friend just lost his wife to pd and she died a very slow and painful death do any of these medication help any of you people
The research shows that although exercise helps PD it must be strenuous exercise. I started working out in 2013 when I was first diagnosed and I find this to be true…i.e. that if I dont push myself, whether its treadmill, stretching or lifting weights it really doesn’t help. The downside is that my joints are starting to fail. Try looking up the literature on working out and parkinsons–I think you will find this to be true
Andy