I can’t speak for anyone else, but I can tell you what Parkinson’s is like sometimes for me. Now don’t get me wrong I do have a lot of good days, but…sometimes I have bad days.
A bad day is like the first time you climb into one of those really big rollercoasters at an amusement park. You are wary, your knees are knocking as they strap you in. Then they tell you a few safety reminders. You grab the bar in front of you…a chill runs down your spine. You turn around to tell the attendant you’ve changed your mind…you want to get off. But the attendant is now hiding behind a sign for a nearby ride, smoking a cigarette, totally oblivious to your mounting anxiety. You yell “hey I want to get off”. But he can’t hear you, because he’s flirting with a cute strawberry blonde attendant in a pair of daisy dukes and a gingham shirt. You feel the coaster lurch forward and then comes that creepy sound of the cable that pulls you up the first steep rise. I hate that noise. It always gave me the Heebie Jeebies.
Ah Parkinson’s, the rollercoaster that you can’t get off. There is a twilight zone episode if I ever heard one. Maybe Rod already wrote that one. I haven’t seen them all.
I stopped working (I was an actress) when my husband and I had our first child. I was lucky – I got to stay home with my two wonderful daughters. I thought maybe I would go back to work when they entered middle school. But I didn’t. Having too much fun being Mom. They both are out of college now with Masters Degrees. I still don’t work anymore. There isn’t a big demand in Hollywood for 57 year old actresses, let alone 57 year old actresses whose jaw, arm and legs shake. Remember that new style of photography that they used on the police show NYPD Blue awhile back? Where the camera never holds still? Imagine if I was on that show…we’d all be running for our Dramamine.
And with Parkinson’s – once you think you’ve got it covered…that you’ve developed the right cocktail of meds and they are working… and you have that smirk on your face as you look in the mirror and think to yourself: “Me one, Parkinson’s zero!”…. everything changes. And on top of the fact that it changes, you’ve got to figure out why it changed. Is it because you are catching a cold or the flu? Your Parkinson’s knows you’ve got the flu a week before you do. A darn UTI can send you into a tail spin. Cranberry juice or no cranberry juice.
Aha, now comes the big question… To tweak or not to tweak. Do I change my med routine? Is it getting worse? Or do I stay the course because I might be getting sick? Or did I get a batch of Dud pills? Parkinson’s likes to keep you on your toes. It’s like walking a tight rope! No, actually it’s like riding a rollercoaster on a tightrope! Now…I’d like to see a Wallenda do that!