Managing speech issues with Parkinson’s — one day at a time
What do skipping rope and Parkinson's speech issues have in common?
Before I knew I had Parkinson’s disease, or even what it was, my family lost their collective mind. They insisted I was whispering and they couldn’t hear what I was saying.
I still remember thinking they were all crazy. Were they gaslighting me? Why would they do that? Was something wrong with their hearing? Because nothing was wrong with me!
Fast forward eight years: “Saaaaa … Saaat … Saaatur … Saaaturrday!”
What I mean to say is “Saturday.” For some strange reason (oh, yes, Parkinson’s), saying the word “Saturday” is especially challenging. I can say any other day of the week, but the “day after Friday,” as my husband now refers to it, challenges me.
Speech issues are pretty common for those of us with Parkinson’s. Before I had deep brain stimulation (DBS) in 2021, speaking softly was the worst of my speech issues. But now? Sometimes I struggle to get the words out. Sometimes I sound a bit drunk. Sometimes I feel like giving up on talking at all.
One of the particularly strange things about my speech is that it’s affected by emotion, just like my tremor used to be. Watch a sad movie? I can hardly talk! Super happy at my daughter’s wedding? I can hardly talk! Tired? I can’t talk at all!
The tremor version of this is that I shake, I shake more, and I shake like nobody is watching. I’m the human mood ring.
Speech therapy seemed to help, but I’m lazy and don’t practice often enough. Why can’t I sound like a normal person? I wonder. Why does everything take so much effort?
The last time I was at an appointment with my neurologist, she adjusted my DBS settings to hopefully help my speech. Now my feet tremor more. It’s a bit of a trade-off, and I’m not sure what the solution is at this point, or even what I want — less tremor or better speech? What a choice.
Figuring it out
As I write this, I’m reminded of skipping. What? What does skipping have to do with speech?
Well, before I had DBS, I skipped as part of my fitness routine. I enjoyed it for a couple of reasons: It was fun, and nothing seemed to prompt more smiles at the gym than when people saw this old gal skipping her heart out. I smile just remembering it.
After DBS, however, I struggled with that skipping rope. Instead of going up and down, my feet wanted to zigzag and crisscross. Nobody was smiling when I skipped. Rather, they’d avert their eyes. It didn’t feel good at all, so I stopped.
I told my husband I’d given up. He, of course, told me I couldn’t give up, and that if it was hard, it meant I just had to try harder. Darn it, his inspirational speeches are annoying.
After several months, I decided to try skipping again. Remarkably, I could — and still can — skip. You see where I’m going with this now? Maybe if I just give myself some time, be kind to myself, and keep on trying, I’ll get this speech thing figured out.
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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Comments
Ruth Ahlbrand
John has had PD for 20 years. 2018 he had DBS. He was feeling much better although his speech was beginning to change. John was a consumate Real Estate Broker. He was the #1 RE/MAX Broker for years out of 120,000 agents. Every year he went up on the big stage at the convention and received #1 for commissions paid , #1 for transactions, and #1 for $volume. Yes, he was a great orator. His wit was quicker than anyone and his tone and punch were almost always gentle. October 2021, he had his right hip replaced. Since then he has shuffling issues, speech issues, and freezing episodes. He exercises without the results he had grown to expect from his lifetime of fitness routines. Something triggered his PD to worsen. I nag about his speech. When he practices his speech, it definitely improves. John is 77 years old and recently stopped going into our Real Estate Office every day. I see the emotional tiredness in his eyes. I feel he is tired of living when it is so hard to maintain any type of normalcy. It is so difficult to be the spouse of a PD person. I pray he does not give up hope; however, I am definitely concerned. He asks why am I hoping and for what. There is no cure; only more difficult issues. You sound like another super star. Skipping? Amazing! I wanted to share with you how similar we spouses are. As the days pass, I miss my John of yesterday. I cannot begin to know how he feels. As I close this message my eyes are tearing - for you, for your husband, and for my John. And, yes, for the pain in my heart. With hope and love, Ruthie
Jean Mellano
Hi ruthie, my heart goes out to you I was diagnosed in 2015 and my husband passed 5 months prior. I understand your husbands despair and feel his pain. My speech is taking a turn for the worse. I used to be an athlete and a dancer and I have lost much. Those of us with Pd or care for a loved one with pd live with the sword of Damocles hanging over our heads as we suffer from this disease of constant losses. I wish you and your husband all the best
Rose
Ruth –
My eyes are tearing now also, for all of us. I have had PD for 20 years and had DBS years ago. My speech has become affected mainly in the last two years. Everybody's always asking me to repeat what I said, and now my mouth is so dry all the time that I have to suck on a cough drop when I read the intercessions at mass on Sundays. For that, at least I'm using a microphone so I can be heard. Apparentl, this dry mouth thing that I have recently is known as Sjogren’s Disease, It's very annoying to say the least. I live in an assisted living facility in New Jersey, and had a speech therapist visiting me for a while, but i didn't really feel this helped my cause.
I guess, the thing that we can all do is hang in there as best we can and be glad for the things we can do. I'm in a wheelchair because my 1 foot is all twisted out of shape from Parkinson’s, and I haven't been able to walk in three years. All I can be sure of is that it will get worse. i'm so grateful that I have a sense of humor and can still see a somewhat shaky light at the end of the tunnel. May God bless us all as we struggle our way through this horrible, debilitating disease.
Rose
mary ellen malone
Does drymouth cause problems? Is it dangerous?
Bastien
Hello- thank you for sharing your story. I find your phrase ' human mood ring' to right on target with me. After many years I enjoyed a slow but reliable ability to talk. Recently however I have had several occasions when face-to-face conversation was so emotionally upsetting to me that I lost my voice. This has become my personal alarm bell to stop and regroup- and if I need, to just leave. Yes I have had to leave a couple of 'bullying' conversations.
If I want to 'regroup', I try humming or even SINGING the first words - because as we know - singing is a separate area of the brain and often intact . What's delightful is that when I start a conversations 'singing' - it makes everyone feel good. You should see the smiles .
p.s. - my family is from Leamington Ontario !
Christine Scheer
Hello Bastien, I love the idea of humming or singing! I have never tried that, but I think I will now. Yes, I completely understand the emotionally upsetting conversations leading to silence. I have certainly experienced that. Thanks for reading my column, your comment made me smile.
Robert Attubato
Anybody have any suggestions as to how to jolt the FDA to fasttrack their approval of Dr. Tass's Vibrating Glove?