I’m a Parkie. As a Parkinson’s Disease (PD) patient I’m allowed to refer to myself as such. I learned this from Jon Palfreman’s Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease, which I started reading as soon as PD was determined — while I was still in the exam room, to be precise. I recommend it as an introduction for those recently diagnosed; the book presents the facts in a very readable, optimistic yet accurate manner. For the record, I’m fine with you — regardless of your neurological status — referring to me as a Parkie. You can also call me Shaky Amy or whatever appellation helps either or both of us deal with my still-raw diagnosis.
Palfreman, like the one Parkie friend I have (that I know of at least), waited a year before telling anyone other than their respective spouses about their ailment. I waited a week. I’m glad I didn’t follow their lead and hope that future Parkies won’t either. It’s not our fault that we have PD. We are not our diagnosis – we are people with a chronic disease, one that we will live with for decades. Breathe. We may shake, rattle and roll, but we’re going to be okay or at least adjacent to okay. And remember, tremors burn calories.
Telling people of my new diagnosis, however, simply sucks. “Hi, how are you? …. Good, good, glad to hear it. …. Me? Well, I’m about to ruin your day.” And then I tell them that my twitchy left limb is PD. If they’ve noticed it previously, I apologize for blaming my asthma medication and coffee. If they say that they hadn’t noticed, I credit sitting on my hands, wearing clothing with pockets and standing with my arms crossed in front of my chest. Or I credit their kindness and class – the tremor is obvious, and not just to neurologists.
My husband and I told our kids casually on a Sunday evening. We soft-pedaled the possible long-term degeneration of my physical abilities such as they are. The kids acted appropriately. My daughter asked if I should drive with my left, tremoring hand on the way to school Monday morning. Yes, yes I can. My seven-year-old son thinks it’s creepy (who doesn’t?). My older son offered to move back home (nope). My husband joined me in my dark humor approach telling me that it’s widely suspected that Hitler suffered from PD too, letting me know that ‘bad people get it too’. Comforting? Well…
I view myself as an agent of good in this world. I’m funny – yes, in both senses of the word – and like to think I brighten people’s days. Now, sadly, I am everyone’s bummer. So, I’ve taken to emailing the news:
I’m sorry to tell you I’ve gotten some lousy health news and wanted to let you know before you hear it from elsewhere. I have Parkinson’s Disease.
It’s not a brain tumor, nor MS nor is it cancer. Hopefully, my symptoms will be confined to the tremor in my left hand for decades to come.
My doctor has already put me on meds that should slow down the loss of the dopamine-producing cells in my brain. And while this won’t make me less twitchy, it should prevent the tremors from getting worse. I’m okay with the prognosis. My neurologist friend tells me that I may insist that Taylor Swift’s ‘Shake it Off’ be played at all of my neuro appointments, which will occur about every six months.
I love the emails I’ve received in response in which people express the unsaid. Tears of gratitude fill my eyes as I read them. There are people praying for me and others researching treatments and supplements they hope may slow down Parkinson’s progression. There is an upside to PD; I feel valued for who I am and how I choose to exist in this world.
But there is a downside.
I’m a righty, so most of the time my twitchy left hand is of minimal inconvenience. But when I want to capture my thoughts — especially when I’m tired — and my left hand falls out of step with my right, my progression across the screen is slowed. Yes, typing 80 words a minute is still good, but it’s not the 90 or so I’m used to doing – and it pisses me off.
Or when I’m awake in the middle of the night — as I am even more often of late. Insomnia is a Parkie predicament – because sleep, which eludes me, is neuro protective. [Is it ironic that I have a disease with ironic symptoms?] But in the middle of the dark with only my thoughts for company … my fears come to the fore. Fear of rapid disease progression … of canes and limited mobility… and most terrifying of all … the horror of dementia gripping me in a conscious nightmare … And … Well…
Then there is the dawn. Both literal and figurative. Those emails. The clinical trials. The Promise of Azilect and…. my support system. I stroke the cheerleader/ rock/ humorist/ lover and pal who snores beside me … The SOB whose shoes I just tripped over on the way to the bathroom … And find dreams worthy of drifting off into because I’m not taking on PD alone… I’ve got a Parkie Posse.