Navigating the effects of Parkinson’s disease on speech, part 3
Lamenting the loss of my ability to confidently speak in public
Last in a series. Read parts one and two.
Before I was diagnosed with Parkinson’s disease in 2015, I used to love getting in front of people to talk to them, usually about food, farming, or buying locally. I found it thrilling. I felt confident and intelligent and even thrived on it. Ask me anything! I usually had the answer, and if I didn’t, I could talk my way around it, make a joke, or quickly change the topic.
For the first couple years after my diagnosis, things didn’t change much. For instance, when I held cooking demonstrations, I always reassured the audience that I was shaking due to Parkinson’s disease, not nerves. I remember one particular presentation where I was making a pizza. As I flipped the dough, my hand tremors were noticeable, but I kept my cool, made a joke, and continued on.
Now, however, things have dramatically changed, and I don’t like it. The most significant differences are my voice and my entire body’s reaction to any type of communication.
Fear, frustration, and a realization
This fall, I took an online writing course via Zoom. It was a great course. On the first day, we had to introduce ourselves, which I’d been expecting. I’d prepared myself with a mental list: Keep it short and sweet with just my name and why I was taking the course. Most importantly, don’t mention Parkinson’s. That information doesn’t need to be out there.
As luck would have it, the instructor asked me to introduce myself first.
“I’ve got this,” I told myself.
“My name is Christine,” I said. And instantly the dyskinesia started.
I was swaying from side to side, bopping forward toward the computer screen, then back, then left, then right. All of this movement was happening at a high speed. Yikes, I better tell them.
“I have Parkinson’s disease, so sometimes my voice doesn’t cooperate,” I added.
Oops, I shouldn’t have said the word “Parkinson’s.” Now I wanted to cry. I felt a surge of embarrassment and vulnerability. I was worried about how I would be perceived and felt a deep loss for the confident speaker I used to be.
Meanwhile, my whole body was freaking out on me, and all I could think about was what I looked and sounded like. I’ll tell you what I believed I looked and sounded like: ridiculous and out of control. It’s frustrating to feel this way.
Then I bopped forward for a nice close-up of my eyebrows, and then back again. To the left! To the right!
“I find it difficult to talk in front of a group,” I said. No kidding.
By then, I was flushing and my tongue started getting in my way. I sounded like I was tripping over my words. At the very least, I sounded like I’d been drinking.
Then my brain disconnected and I had no idea what I said next, but I ended with, “I find it easier to write than talk.”
It was over. Finally, I could breathe again.
The remainder of the course went well, but there wasn’t any hope of me participating. I didn’t want to relive that nightmare. No amount of speech therapy could’ve solved this problem.
Why have I been sharing all of these low points and awkward situations? Because I’m tired of feeling alone with them. Keeping them inside and reliving all the embarrassment, time and time again, isn’t working for me.
Do I have a solution? No, I don’t. But sometimes things aren’t as terrible as we imagine them to be.
A few days ago, I watched an interview with a person who has early-onset Parkinson’s disease. She was lovely — bright, articulate, and engaging. She also had pretty wild dyskinesia, but I didn’t care. I was more interested in what she said than how she looked. Then I realized that probably nobody cared about my own wild gesticulations or even my voice fluctuations. Most people are kind and patient. Most people will give us the benefit of the doubt. Most people are my people: family, friends, and even strangers in a cursed writing course! They are people we need to surround ourselves with. They understand, empathize, and make me feel less alone in my journey with Parkinson’s.
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.
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