I, too, was diagnosed with PD while living in retirement in Brazil 8 years ago. Having been a Vietnam vet and a Marine stationed at Camp Lejeune (contaminated drinking water lawsuit for PD and many other afflictions), I returned to the States only to find I'd lost a good chunk of my Social Security (I never planned to return to the U.S., so the Soc. Sec. Department withheld a year of my payment and deducted 10% of my Social Security for each year that I lived outside of the U.S.--not paying for Medicare Part B, which is useless outside the country.) The first neurologist I saw, as a cash customer since I wasn't getting my Medicare for my first year back, said he was 99-percent certain that I had Parkinson's Disease. And he was a highly respected neurologist. When I finally settled down and was able to visit a VA hospital, they set me up for a DaTscan, which came back negative, and then a skin biopsy--inconclusive results. I was then pretty-much told to "get lost." I'd had tremors for about twenty years prior to returning, and had trouble walking, was unable to get in and out of a car or bed, so I continued seeing neurologists through Medicare with differing opinions, but no specific diagnosis. Finally, eight years after first being diagnosed with PD, I saw the head of the neurology department at Stanford Medical, who told me that I had Functional Neurological Disorder, also known as Conversion Disorder. The symptoms vary greatly and doctors are reluctant to give this diagnosis. Neurologists sent me to psychologists and psychologists told me to see neurologists; and on and on it went. Neither discipline would take responsibility for giving any specific diagnosis. I'm now working with physical therapists and exercising regularly. I have a healthy diet, a loving wife to back me up, and I'm through with seeing doctors unless some part of my body is broken. I'm still living with my Parkinson's symptoms, and fortunately they haven't gotten much worse. And my spirit isn't broken. Although I no longer depend on the VA for assistance, they do tremendous work for veterans who live in some regions; in others, especially rural areas, they simply wait for the older Vietnam vets to die. For too many vets, it's a sad state of affairs--losing their homes (purchased on the GI Bill to foreclosure due to a reversal of support by the current administration), having their healthcare cut drastically, feeling deeply betrayed, and even losing all hope. I'm moving forward and although I'm no longer able to drive a car, I stay active, working with other veterans at a grassroots level of all political ideologies and ideologies to come together to stop privatizing the VA, a ruse to siphon money up the line. That's the lone governmental agency that our government (Congress, Executive Branch, and high-level officials) is afraid of agitating in any way. They're going after every other government-related group except the Veterans Administration. There are as many as 18 million veterans in the U.S. We are a force that can fight to protect our civil liberties and due process. I hope you get the care you need to stay as healthy as possible. You'll likely experience disappointment, but stay strong and be your own advocate.
Wow, you've been put through the wringer, haven't you? Thank you for sharing your story and especially about the Functional Neurological Disorder/Conversion Disorder. I've never heard of it (and I used to do medical transcription for a neurologist). I wonder if learning to meditate might help to relax your brain.
I am scheduled for an MRI in a week to rule out Vascular Parkinsonism. As much as I don't want to have PD, it would be the lesser of the two evils - at least Parkinson's can be treated, whereas Vascular Parkinsonism has no treatment at all.
I wish you all the best, and our country, too. You are correct about what this administration is up to - working hard to help the rich get richer, at our expense. I am a vet, too - I served in the Air Force in Desert Storm - possibly the briefest war in history. My cousin, Arnold (Arnie), was a Marine like you who also served in Vietnam. He was killed In Quang Tin province on May 26, 1967. To this day, we continue to mourn his loss.
Semper Fi!