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.
Pauline vermette
Hi there
I am living in Vancouver bc and was diagnosed with of last year. All though it does not show yet I am coping with a compression fracture of my back. Having compression means walking with a cane that I should get use to. Some people think it’s of but it is not.
Heyward Michael Dreherd
I diagnosed with PD in May. Early stage one, no tremors, just some right and stiffness and a little imbalance. When I was diagnosed it was pretty much identified that my rapid speech was part of the PD back on quite a few years. It actually may have been my first symptoms. On October 11th I had a small right thalamic stroke. Because of my PD, I was enrolled in in 18 session Parkinson's voice project speech therapy. I am 2/3 completed the program. It may be unbelievable, but my speech is definitely better than ever. First of all, as a professor I have spoken internationally, but in the last 5 Years I have avoided formal presentations even though I have a very high executive job. I speak slower than ever, but that is now not in a bad thing. I articulate better, I speak with more clarity. I've learned how to speak with i n t e n t! You want things I have learned to do pretty well, is to prompt my brain for the next word by sentence, and break down syllables. I even off at as people how my speech is, just saying I've had a stroke or that I have PD, besides Parkinson's voice project, there is also a program called LS VT, speech therapy for PD and neurological disorders that affect speech. I wish the best for you.
Christine Scheer
Hi, I have heard so many good things about LSVT speech therapy. I am very happy it is working so well for you, and I need to get in a program, I think.
Thanks for reading (and commenting),
Christine
Sheldon Schultz
Enjoyed the comments while understanding that it doesn’t get any easier as times go by.,…
Christine Scheer
Hi Sheldon,
No, it isn't getting any easier, that's OK, I'm a fighter!
All my best,
Christine
Rachel Hewitt
I had to look up "Parkinsons and Speech" to find out if my speaking issues was a "thing". Not one of the 20 or so people in my Rock Steady class seemed to suffer a loss of fluid speech.
I am so sorry for your suffering but you have validated what I suspected. I mentally count my verbal stumblings and emotionally pat myself on the back when I succeed (alas this is becoming rarer).
Thank you for you funny and beautifully written article. Misery loves company.
Christine Scheer
Hi Rachel,
LOL, yes indeed! Misery does love company!
Thanks for reading,
Christine
William Palmer
Thank you, Christine. I felt your pain as you shared this so clearly. I have trouble speaking each morning for a few hours until my meds regulate. I sound mentally disabled--it's hard to say mul-ti-syl-la-bic words smoothly. I avoid morning doctor appointments . . . and phone calls. I used to stutter badly as a boy. My current speech issue brought up a lot of pain, but I'm getting used to it. I work around it. I taught college writing for forty years. Now I write and publish poems--it's a kind of salvation.
Christine Scheer
Hi William,
Oh, if only my speech was predictable! Multisyllabic words are the WORST!
Hang in there, and thanks for the support!
Christine
Kevin
Thanks Christine. I have had similar events. Your words made me feel connected. Kevin
Christine Scheer
Hi Kevin,
If there is one thing I've learned since I've been writing this column, it's that we are never alone.
Take care,
Christine
Lynne Smith
Thank you for your beautifully written and honest post.
At year 7 my speech is too soft, gruff and frustrating. I do have a few hours of almost normal speech, still having trouble with pronunciation. I have had two sessions of Speech Therapy that have only helped my tendency to aspirate.
Like yourself, I used to speak publicly: lectures, presentations, meetings. Now, if I make a phone call when my speech is better, it usually deteriorates soon.
I am now inspired to accept it.
Christine Scheer
Hi Lynne,
Acceptance isn't easy.
Hang in there! Thanks for reading.
Christine
Russ Barnes
Thank you for sharing that story. I never enjoyed public speaking, but I was good at it for a while. I REALLY do not enjoy it now and it is limiting.
Maybe, I should try again.
Thank you for your courage.
-Russ
Christine Scheer
Hi Russ,
Thanks for your support!
All my best,
Christine
Teresa Strong
Have you ever heard of Parkinson Voice Project? I highly recommend it. It is one of the best programs I have ever come across. The woman who started it is incredibly inspiring, and she really understands what you're going through, and she explains on detail what to do about it. Go to this website: https://parkinsonvoiceproject.org/. Be sure to click on the links: History. What is Parkinson's? Then click on Parkinson Speech Exercises, and you can actually perform the voice exercises, live M-F, or try many saved exercises. . And on Thursday they have a live sing-along, but you can access the recording anytime. And it costs nothing. She does recommend seeing a speech therapist trained in her methods. Good luck. Do not give up hope!
Christine Scheer
Hi Teresa,
OK, I've heard so many good things about this project, that I am going to stop procrastinating and look into it, because you never know. Things can change for the better.
Thanks for reading and commenting!
Christine
BETTE PINTAR
I KNOW WHAT YOU ARE TALKING ABOUT. I CAN BE FINE AND ALL OF A SUDDEN IT STARTS IN. MY VOICE CAN GET HIGH AND SQUEAKY OR VERY LOW AND DIFFICULT TO HEAR.
AND ON TOP OF IT ALL MY SON THINKS MY SPEECH DIFFICULTIES ARE DUE TO MY BAD ACTING. HE THINKS I AM FAKING.
I HAVE FOUND THAT TAKING MANUKA HONEY HELPS.
Christine Scheer
Hi Bette,
I'm sorry to hear your son is not supportive. Maybe get him to read the column so he might better understand what you are going through.
All my best,
Christine