On April 11, we will celebrate the birthday of James Parkinson, M.D., who published his groundbreaking essay 200 years ago in 1817 on what was then known as “the Shaking Palsy.” His narrative reporting of six case histories is as readable as a 19th-century British novel, and has been called a “gem of the neurologic literature.” You can read the entire text here.
Last October, during Breast Cancer Awareness Month, I posted “Breast Cancer vs. Parkinson’s” to highlight the differences in approach to publicising these two diseases. I am repeating it here because Parkinson’s Disease affects so many of us, yet does not get the PR that a “sexier” disease like Breast Cancer does. We can and must do more to educate people about Parkinson’s, especially since the numbers of people affected are expected to climb rapidly in the coming years.
As a footnote to the blogpost, last month my daughter and I walked in a 5K for the Michael J Fox Foundation. We had a great time, but the number of people who came and walked was probably less than a 10th of the number who walk for Breast Cancer. And the same for corporate sponsors. We need to do much better.
Breast Cancer vs. Parkinson’s
Almost eight years ago, I was diagnosed with Parkinson’s and Breast Cancer in the same week. Obviously, it was a week when I wished I had just stayed in bed and hid under the covers. How do you react to the news that you have not one, but two major health issues that will be with you the rest of your life?
Much of the next six months remains a blur to me. I underwent a lumpectomy and radiation for the breast cancer. A neurologist put me on ever increasing doses of Requip, and my estrogen patch was taken away from me. All of this meant that I slept all day, was plagued by hot flashes all night and pretty much walked around in a fog all of the time.
Somehow I was able to come to terms with having breast cancer immediately. My mother had it, my sister had it. It is the disease that most women fear most. And it is the disease that is talked about everywhere. October is Breast Cancer month and there are a lot of stores that celebrate by producing Pink Products, or should I say Pink Profits? It doesn’t matter how useless the Pink Products are, we buy them anyway because it makes us feel like we are doing something positive. Celebrities talk with pride about recovering from breast cancer. There are rallies and walks to raise money. I even corralled my friends to walk with me as a team for the Revlon Breast Cancer Walk that first year. We wore our Pink boas with pride as we finished our 5K walk and entered the field at the Los Angeles Coliseum where the Olympics were held. We were Champions in Pink! Breast Cancer is fashionable.
But Parkinson’s is another story. It was hard to come to terms with that diagnosis. I wasn’t that old (57), I wasn’t a man, I didn’t shuffle, and I didn’t know anyone else with PD in my family or circle of friends. It was something my friend’s parents had, but they were much older and didn’t move very well. There were no Parkinson’s products for sale in the department stores during Parkinson’s Awareness Month. I didn’t even know there was a Parkinson’s Awareness month until this year. Parkinson’s events were not well publicized. After all, who wants to go to an event where everyone is shaking, drooling and shuffling? Parkinson’s is definitely not fashionable.
I was active, playing tennis, going to yoga, traveling and enjoying life as much as possible. I didn’t have time for a chronic degenerative disease. I just had a tremor, so I tried to hide it. And I kept trying, but after a while, people started to notice. I thought that if I didn’t say anything, it didn’t exist. So I did what my friends and I call the “Parkie hand-hiding strategy”. You know the one where you hold your shaking hand, sit on it, stick it into a pocket or purse, or do some other strange maneuvers just to prove that it isn’t shaking.
But of course, that didn’t work and I was only fooling myself. So why couldn’t I admit it to myself? Why couldn’t I tell others? It took a lot of therapy and writing my personal narrative for me to confront what I called the “Elephant in the room”. Once I started to write my narrative*, which only my therapist was privileged to read, things started to change. I started to write about life with PD. But only for other Parkies. The rest of the world still didn’t need to know. And then one day, I made a mistake. I posted something meant for my Twitchy Woman Facebook page on my public Facebook page. And the world didn’t come to an end. Wow! I was outed. And it was okay.
So now I have embraced my PD. There is a wonderful world of people in the Parkinson’s community that I have met. The time I spent last month in Portland at the World Parkinson Congress was an eye opener. I was able to meet some people who I have corresponded with through this blog. I talked to doctors, therapists and researchers who valued my opinion. I spent time with new friends and old friends, looking for answers and camaraderie. We have a common bond and we understand each other. And we don’t all shake, drool or shuffle. In fact, we spent a lot of time working to dispel that image. We all have the Elephant in the room, reminding us that life is not the “normal” that it used to be. But that elephant is getting smaller and smaller, and one of these days, hopefully very soon, it will be banished from our lives.