Funny how life changes and surprises us, when I was a kid the only thing I ever wanted to do was fly airplanes. It was my dream to fly for a living and I did, I spent all of my working life for the most part flying for an airline, it was everything I thought would be and I loved it. Along the way I also became a sailor, if fact that was the retirement life my wife and I dreamed of. About 10 years ago things started to change. I began to notice that while on the sailboat my balance was “off”, I just didn't feel comfortable moving around on the boat. I always told my wife, who came to sailing years after I started, “always hold on one hand for you, and one for the boat”. That didn't seem to work too well for me anymore, stepping off the boat to a dock started to be a real trick, a few times it didn't quite go as planned, I missed or tripped or something. My wife was beginning to think I was a secret drinker. My walking in general was off balance. Then other things started, my mood was getting hard to live with, I was becoming depressed, It was much more noticeable to my wife. I went to a Dr and he gave me an antidepressant, told me not to worry it wouldn't show up on a drug test. He didn't tell me he was going to tell the flight surgeon. Up to then I had no problems with 6 month checks, and my every 6 month flight physicals. I went into training for a new airplane and for the first time in my life I was having problems with training, trouble concentrating, finding my hands would sometimes not go where I wanted them to, strange things. I was developing more of the non-motor symptoms, no tremors but slowing down, just getting stiffer, getting harder and harder to climb in and out of the seat.
For my next flight physical my Dr passed on to the flight surgeon I was suffering from depression and taking med's for it. My career was over, just like that. The antidepressants had been helping, maybe saved my marriage so I couldn't quit those, the psychiatrist and the therapist weren't helping. I started driving tuck over the road, the worst job I ever had. Good for some not for me. Then Christmas morning 2007 things really changed, I got out of bed early in the morning and collapsed, passed out for just a few seconds but everything changed, went up a notch so to speak. About 3 years of testing for everything they could think of. One Dr said “I'll make sure to note your multitude of symptoms, “ and that was it. Never saw him again. They did find a cervical spinal steno sis, which had caused some nerve damage. Now I was disabled and could no longer work, but something else was wrong, still no tremors. More tests, having strange muscle movements, twitches, fasiculations, another test for ALS, now it's getting scary, but no it wasn't that. Finally a neuro gave me sinemet, IT WORKED! We now knew. We were pretty sure what it was, it is so easy to research on the internet now. Finally we knew the demon we had to fight. Not good news, but a relief.
The reason for saying anything about this is to let people know a bit about how hard it is to get listened to for one thing. There is so much more than just tremors and dyskineasa to this. There are people with PD who don't realize there are some of us with no tremors. In our support group there are 3 of us, over all about 30% of pwp don't have visible tremors. If people learn more about the not so obvious parts of this thing, maybe more people will think about the possibility of PD and get relief. It is all in how the rest of the world sees it.