David’s Story

I was first diagnosed just about a year ago after my cardiologist noticed that I was dragging my left foot when I walked and that I had a slight hand tremor. He didn’t specifically mention PD but strongly recommended I see a Neurologist ASAP.

Fortunately, my wife was present and pressed me to agree to follow his recommendation. A few weeks later, I was examined by a well-regarded Neurologist in Philadelphia and given the bad news.

We discussed the implications of this diagnosis and determined that I had been exhibiting several other symptoms for several years but had been just ignoring them as part of the normal aging process (I was 68 at the time).

We discussed treatment options and the regimen I’m on has been quite successful so far.

One of the other revelations during that visit was that my PD may have been related to exposure to Agent Orange during my Army tour in Vietnam in 1970 and ‘71.

Returning home, we began the “acceptance” process and quickly recognized that the Neurologist was right when he indicated I’d been symptomatic for several years. I’d been struggling with handwriting, keyboarding and public speaking for some time and fatigue was becoming increasingly common. The more we discussed my situation, the more we realized how long I’d been increasingly symptomatic.

Over the next several months, we made some major changes; chief amongst them was that I closed down my consulting business and “retired”.

A year later, we are still adjusting and trying to determine exactly what this PD “thing” is all about.

One good thing that we discovered was that after 30 years of denial, the Veterans Administration had finally recognized PD as a “presumptive result” of Agent Orange exposure and granted me a full disability and full health care coverage. After years of hearing nothing but horror stories about the VA, I’ve been surprised by the quality of care and the positive attitude of all the VA professionals I’ve dealt with. Just their assumption of all of my medication costs has been a great financial relief.

As I said, we are still feeling our way through this experience and still have a lot to learn. Something new seems to pop up every day, sometimes good, sometimes not so good.

We just try to keep moving forward.

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Comments

View Comments (7)
  • Donna1947
    7 months ago

    Excellent story and information. Thank you for sharing.

  • Pathfinder1967
    8 months ago

    David,

    Vietnam 9th Infantry 1967-’68 (TET), Adv Tm 43 ’71-’72 (Easter Offensive). Diagnosed last October with PD by a VA Neurologist. Decided NO RX for me. I am fighting it head-on until I cannot fight any longer, THEN, maybe sinemet of some other pharmaceutical.

    Forty-five years of dealing with the VA about Agent Orange (4 heart attacks, two open-heart surgeries, six bypasses) and they awarded me 100% disability for ONE month. I am looking for medical research that links side-effects from an overdose of Bupropion (by VA) that caused a psychotic reaction and may have triggered my PD. Sold my home in Texas and moved to Florida.

    The VA here hooked me up with a young neurologist who wants to run her own tests and make a diagnosis based on what SHE thinks. I declined. She wants to make a name for herself. I want to die in peace (just not too soon). Also looking for a good law firm consisting of veterans who want to help Vietnam vets deal with the VA. If you know of any, please, let me/us know.

  • DavidStone author
    8 months ago

    Pathfinder,

    You’re getting some bad info from someone within the VA.

    PD has been classified, for several years, by the VA as what they call a presumptive condition. This means that if you were anywhere in Vietnam during the time Agent Orange was being used (essentially from 1965 on) AND you have been diagnosed with PD, you WILL be classified as being permantly 100% disabled.

    In my case, I was initially diagnosed by a private Neurologist who specializes in movement disorders. He wrote a letter containing the details of his examination and the observations that led to his diagnosis that I submitted to the VA along with my application for disability.

    The VA scheduled an examination with one of their Neurologists who examined me for about an hour, repeating some of the tests, and agreed with the diagnosis. He forwarded his recommendation to the VA Disability Department who then scheduled a case review a few weeks later. The review was little more than a review of the paperwork and an explanation of how my disability would be managed. A week or two later, I received an official letter confirming my status a 100% disabled.

    I’ve spoken to several other individuals whose experiences were the same.

    I strongly encourage you to do two things immediately:

    1. Contact a Veterans Service Officer at one either the VFW, DAV of American Legion. They will assist you with the process and paperwork.

    2. Meet with the VA Neurologist as soon as possible. Their diagnosis is the key to getting classified as having PD and, therefore, assured of being eligible for a disability pension.

    That’s the entire process. If you were in-country and have PD, you must be awarded the disability. Period, no argument or further discussion is necessary.

    Please make that appointment immediately and get the process underway.

    Also, please keep in contact with me and let me know what happens.

    Regards, David

  • Donna1947
    7 months ago

    Dear David: I can’t thank you enough for your informative reply to Pathfinder a few weeks ago.
    It was your letter to him that sparked us to see a Veterans Service Officer yesterday and get assistance with an application for disability compensation. My dear husband (age 72) worked hard all his life, honorably served in the Army for three years between 1965 through 1968. During that period he had boots on the ground in Vietnam. He was recently diagnosed with Parkinson’s Disease by a private Neurologist. Although the diagnosis was listed as ‘mild’ Parkinson’s at this time; we can already see changes and progression in his condition.
    We were blessed to have gotten a wonderful VA Service Officer yesterday.
    I just want to sincerely thank you for putting out the information and helping to move us in the right direction. You are truly a beacon of light for us and we wish you all the best. We hope to continue to read your articles and the many other inspiring comments from all of the readers in this blog. God’s blessings ~ Donna1947

  • Michael Church
    9 months ago

    David, as a fellow veteran, I want to thank you for your service and the commitment to the defense of our country. Your exposure was a definite sacrifice. Too bad it took so long to diagnose. As one of the original advocates who pushed congress to declare PD a presumptive disability as a result of exposure to A.O. The good thing is treatment is available and covered by the VA. Thanks for sharing your experience.

  • DavidStone author
    8 months ago

    Michael,

    Thank you for your efforts to get PD classified as presumptive. I’m sure it took a lot of blood, sweat and, probably, tears, to make it happen.

    Thank you for persevering and, ultimately, triumphing.

    Warmest regards and with great appreciation,

    David Stone

  • chris.hall moderator
    9 months ago

    David – thanks for continuing to share about your PD journey with us! I’m glad that your cardiologist was so observant, and that your wife was there to encourage you. The VA has certainly been in the hot seat for a while now, so I’m relieved to hear about this extremely positive experience you’ve had! As you said, there’s a lot to learn about PD, but this community will be here to help along the way. Thanks again for sharing with us! – Chris, ParkinsonsDisease.net Team Member

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