Navigating the effects of Parkinson’s disease on speech, part 2

Second in a series. Read part one.

Every Tuesday I go on a walk with my Parkinson’s buddies. I started this “walk ‘n’ talk” group after my deep brain stimulation (DBS) surgery in 2021. I like talking about Parkinson’s, and usually I ask the other walkers questions about what’s going on with them or share about my own symptoms, medications, supplements, and so forth.

I talk about my speech a lot, but one thing I find difficult to discuss is how emotional I can get over the slightest thing — good news or bad. I’ll often choke back sobs by the time a conversation is over, which can make for some awkward situations. Am I really so upset that I need to sob? No, I’m not, but some switch in my brain flips, and before you know it, my voice is getting thick with tears.

Sometimes I can’t talk at all; I’ll look at the person I’ve been conversing with and think, “I hope you can read my mind because this is as far as I can go.” The only way I can stop myself from sobbing at that point is total silence. My friends are kind; they wait out this situation and pretend they don’t notice. My husband usually hugs me and asks, “Are you too emotional to talk right now?”

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Don’t get me started about talking on the phone or doing a Zoom call. Unbeknownst to the “normal” world, these are highly stressful situations. Making dinner reservations takes a heroic effort. I shake, get choked up, and garble my words. But I still like going out for dinner, so I go forth!

I don’t usually share these details about my speech because it makes me feel incompetent and powerless. It isn’t comfortable!

We’re in this together

A few weeks ago, our group went on our usual Tuesday walk. It was a windy fall day with leaves blowing around us, and I walked with somebody I don’t often walk with. He’s a quiet gentleman, so I knew I’d be doing a lot of the talking. We talked about medication, neurologists, and dyskinesia, and then we got on to the subject of our speech. Discomfort and stress were the ties binding us. I told him I was uncomfortable with many situations — shaking, anxious, and strangely tearful.

He stopped walking, stared hard at me, and said, “I thought it was just me. I thought I was the only one.”

His words struck me and echoed my feelings. In that moment, we both realized we weren’t alone in our struggles.

It was a moment of relief and reassurance. No, you aren’t alone, friend. We’re in this together.

He also told me his concern that perhaps others thought it was rude when he had to leave a conversation after a few minutes because of his discomfort. Shoot, I hadn’t even thought of that! His perspective opened my eyes to a whole new aspect of our shared experiences. I hope nobody is thinking that I’m rude when I don’t respond.

I’ll never know what people are thinking, but trying to explain my speech to people I don’t know is tricky, especially on Zoom. Gory details revealed in my next column!

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.