Reclaiming my voice through Parkinson’s speech therapy
The online sessions give me the skills and confidence to speak out
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Parkinson’s disease takes a lot away from you. And when you are diagnosed with early-onset Parkinson’s, it can steal so much of your future.
I feel lucky that nearly 13 years after my diagnosis at age 36, the majority of my symptoms are well controlled. I have very few tremors and limited dyskinesia throughout the day. I still walk without a cane, walker, or other mobility aids. I still have an active and rich work and social life. But one symptom that has increased in recent years is the impact on my speech.
I have mentioned before that my ability to write and speak has been affected significantly. I have micrographia, which means I can no longer write legibly by hand. And my speech has become softer and a bit slurred. Last week, I started addressing it through a monthlong intensive Parkinson’s voice program with a speech-language pathologist.
Speaking with intent
I happen to be using the SPEAK OUT! program, but there are others, including the Lee Silverman Voice Treatment BIG and LOUD programs. While any speech-language pathologist can work on your speech with you, I like the idea of working with people who understand Parkinson’s, because the disease can affect not only speech, but also swallowing and other complicating factors.
Because SPEAK OUT! is part of a teaching program at a local university, I am involved in training new speech therapists and exposing them to working with people with Parkinson’s disease. That is important to me because the Parkinson’s population in the U.S. is growing. An estimated 1.2 million people in our country will be living with Parkinson’s by 2030, and we need all the doctors and therapists we can get to be armed for battle with this crazy disease.
The grad students I’m working with are all bright and energetic young women. But don’t let their peppy demeanor fool you: Speech therapy is hard work! My program consists of two individual sessions a week and one group session, all on Zoom and lasting 50 minutes each. I thought it would involve some work, but also be a sort of break in the day for me. Was I ever wrong!
On the surface, it may seem like speech therapy is all about making funny noises and saying phrases like “may-me-my-mo-moo” over and over. But one of the key tenets of the SPEAK OUT! program is intent. Doing the exercises with intent takes focus and energy. You have to sit up straight, stay hydrated, breathe, make sure you’re opening your mouth wide enough, and concentrate — hard. Suddenly, something you’ve done automatically since you were a child — talking — requires intense focus and conscious thought. It is as mentally exhausting as physical therapy is physically exhausting.
It can also feel silly, but due to another weird symptom of Parkinson’s called facial masking, what feels like an exaggerated facial movement to me looks normal to the rest of the world. We worked on several vocal exercises in my first two solo sessions, focusing on helping me move my mouth, project my voice, and support my breath. The group session supports social interaction, which Parkinson’s patients may avoid due to communication difficulties.
I’m supposed to practice twice a day, and each session takes about 20 minutes. Fortunately, I don’t have to remember my exercises because there are free daily live classes and hundreds of recordings on the Parkinson Voice Project website. These resources are incredibly helpful.
It’s only been a week, but I already feel I have some new tools to help me with my everyday speech. And I love that it’s online, so it’s easy to do, and that it also has a social element. If you’re having trouble with your speech, I urge you to find a speech-language pathologist or at least try some of the videos online. They’re totally free, you can make the weird noises at home in private, and it may just give you more confidence to speak 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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