Telling others about my Parkinson’s diagnosis isn’t always easy
What do you do when sometimes you just don't want to talk about it?
When I was diagnosed with Parkinson’s disease in 2015, I was alone.
I had an appointment with the neurologist, and I never even considered bringing somebody. My husband, John, was working as a vendor at a farmers market, so I drove straight there after the appointment. He was busy with a customer, so I waited to get his attention. He took one look at me and knew that something was wrong. He frantically got somebody to look after our stall, and we both went and sat in the back of our van and cried together.
One of the difficult things about a Parkinson’s diagnosis is telling people. I know people who were diagnosed years ago and still haven’t disclosed it to some of their friends. When I received my diagnosis, I told everyone. I was sending group emails with the subject line “bad news.” I felt that by promptly sharing the information, some of the burden of the disease was lifted. Now, however, things have changed.
A few years ago, when I was at “Peak Tremor,” I was in a store and had difficulty carrying a pile of gift boxes I wanted to buy. For some reason, I hadn’t grabbed a shopping cart, so I piled all of the boxes in my arms and went to the long checkout line. At that point, I was having violent tremors, and it was all I could do to hang on to those boxes. It was a sight to behold, I’m sure.
When I got to the cashier, I dumped everything on the counter and apologized. But for what? Having an uncontrollable tremor due to Parkinson’s disease? I didn’t feel like that was anyone’s business. I hesitated when she looked at me and asked, “What’ve you got?” I told her it was Parkinson’s as she bagged up my gift boxes. She sent me on my way with the promise that she’d pray for me.
These days, since I’ve had deep brain stimulation, it’s not very obvious that I have Parkinson’s, and I don’t feel obligated to tell people I’ve just met.
Recently, John and I attended a friend’s wedding. We had a wonderful time and met many new people, most of whom didn’t know I had Parkinson’s. I was wearing sandals, and as we left the party, I accidentally kicked a small stick with my big toe. At first, it seemed OK, but then it started to bleed, and within seconds, I was standing in a giant pool of blood. The toe didn’t seem like it would stop gushing blood anytime soon.
That’s when John left me alone to get some napkins to soak up the blood. I was standing very still because, at that point, I thought my toe might fall off. We are talking record amounts of blood here. Then, a couple came along, saw me standing there and asked if everything was OK. Of course, I said yes, but they came close enough to see the blood and went into full-throttle good Samaritan mode!
John returned to me and my new friends, and by then, with all this attention, my feet started to tremor. Who knows what these people were thinking, but they made it clear they wouldn’t leave me alone, bleeding and shaking, and that I needed more help, no matter how much I protested. By then, a small crowd had gathered, including a woman who was a nurse. She immediately took charge of the situation, cleaning my wound, bandaging it up, and then asked me why I was shaking so much. I know she was asking for all the right reasons — maybe I was going into shock; perhaps this was a severe cut; maybe I had to go to the hospital — so that’s when I had to tell her and all my new friends that I had Parkinson’s.
The cut? It was teeny tiny; it just happened to be a bleeder.
The next day, the bride texted me. She had just heard about the big toe incident and was checking in to make sure I was OK. I was mortified by the attention I received because of a stubbed toe.
Things can get blown out of proportion sometimes, but everyone I’ve met on this Parkinson’s journey is kind and caring. They don’t care that I have Parkinson’s. They want to ensure that I am safe and healthy, and I am always grateful for that.
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