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.
Boxed in
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.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
About the Author
Comments
Kathryn C Hauck
I was diagnosed with PD in 2018. I decided to tell eveyone that I had Parkinsons as a way of taking charge of the disease rather than feel like a passive victim. Sometimes I struggle to sign a receipt and then I thank the clerk for their patience bc I have Parkinsons, even if they didn't seem impatient. They always say "take as long as you need". If I have to fill in a long form by hand I explain that the form will be completed faster and be more legible if someone can fill it out for me bc I have PD. I'm not apologetic about stating I have PD, just matter of fact, just like if I have high blood pressure or diabetes. At least PD is a disease that most people have heard about or they know someone who has PD. Sometimes these casual encounter leads to questions and teachable moments.
Trudy. Cristallo
Nice to meet you Christine.
I was diagnosed in 2014 with Parkinson’s Disease. When I was first diagnosed Iiwas very quiet and didn’t want everyone to know, as the years go by I have become more verbal and actually just let everyone know that I have ParkinsonsDisease.. I am 70 years old and I have a lot of friends with and without Parkinson’s disease and I am enjoying my life with my husband and my family. I hope this wasn’t too much lol
Jack Winover
I’m diagnosed with aTypical Parkinson’s ( no tremors nor facial masking ) I’m often questioned as to what’s wrong.
I usually try to explain, mine came from exposure to Agent Orange at that it effects everyone differently…
Sometimes I get..well you certainly do not look as if you have Parkinson’s. Those times I wish I had not said anything…
Jess E. Hall
I am a new care giver. My best friend, my wife has PD. I am trying to learn all I can about how to help her through whatever comes.
Thanks You
Jim Coon
I, too, save the "big reveal" for those times when it is really necessary. I was diagnosed 10 years ago and, thankfully, have managed to slow the progression with 7-day-a-week intense exercise. My tremors are noticeable at times but nothing compared to the non-motor symptoms. I dropped a cup of coffee at a meeting recently and mentioned to the person I had just spilled coffee on that I had PD and that was the culprit. She said..."well, you look great and just be glad you don't have cancer like my mom!" I told her I certainly was fortunate not to have cancer. You know this drill. People don't see the chronic leg pain, depression, anxiety, spurts of anger and sleep issues. And I don't expect them to. But at least I look great! :-)