Nearly a year ago, Michele Demarest, MS CCC-SLP, CBIS, the owner and Director of Morris Speech Therapy Associates in New Jersey, was invited to a PMD Alliance Learn. Live. Connect event in Westfield. She was invited to speak, but she had a better idea: “Do you want me to come and do speech and swallow screenings?” she asked. No one had ever suggested that idea before; our programs team said yes.
“Speech and swallow screenings are typically done in Pre-Ks and kindergartens,” Michele told me. But for people with movement disorders, she insists, these screenings—and the therapy that may follow—are essential. “Not every doctor considers us part of the continuum of care,” she said, “so people with degenerative disorders may not even know they need help, that they need our services.” These screenings are designed to shed new light.
That day at the Learn. Live. Connect event, Michele and her team screened at least 15 people in the three hours they were there. “We kept going while they cleaned up,” she said. She remembered seeing several men come in who had deep brain stimulation (DBS) surgery. “Here they are, at the peak of technological advancement,” Michele said, “with their DBS technology on their phones. They could decide when to stimulate their basal ganglia at the click of a button. But some of them had never had a speech or swallow screen. It’s amazing: on one hand, you have technology catapulting ahead—but then on the other, you have the functional reality: they’re not getting the full care they need. That reality just slapped me in the face.”
Michele has seen firsthand how speech therapy can profoundly impact a person’s daily function.
Michele Demarest came to speech therapy mid-career. “This was my third profession,” she said. She was 40 years old. She came to speech therapy having lived enough to know what she truly wanted.
When she was a child, she thinks she may have had childhood apraxia of speech, though it went undiagnosed. “My mom said no one could understand me for a long time when I was a kid,” she said. As she began to study speech therapy, she put the pieces together for herself. Perhaps this planted the seed in her.
But, more than that, communication and self-expression is at the heart of who we are. After two other professions, Michele turned to speech therapy because she genuinely wanted to help people: “I wanted to get people the chance to communicate better.”
Ten years ago—with only a backpack—she started Morris Speech Therapy.
When you’re living with a movement disorder, it can impact your speech, your ability to be understood, the loudness and rhythm (called “prosody”) of your voice, and your chewing and swallowing. Not only can this make it harder for you to communicate, but its impact on your ability to swallow can be dangerous.
Just as the rest of your body experiences a decreased range of motion with a disease like Parkinson’s, the same happens to your articulators—your tongue, lips, teeth, and jaw. When it comes to speech, Michele explained, “Depending on what stage of the disease you’re in, you’ll start a sentence with a typical jaw height and then, as you go along, you’re going to decrease your jaw height and movement of your tongue or lips. When you walk, this is called festination or bradykinesia. It’s the same thing with your mouth.” At first, she said, your speech may be breathy and horse or you’ll slur a few words. But over time, without the intervention of therapy, you won’t be able to open your mouth wide enough or control your lung grading enough to speak clearly.
Your voice may get quiet too, and just as your face’s ability to convey emotions may flatten, the same can happen to your voice, as if it gets stuck in monotone. But, Michele says, it doesn’t have to be this way.
“We’re all familiar,” Michele explained, “with the way our bodies get weaker quickly if we don’t use them.” This is why, with movement disorders, exercise has become a key ingredient to care and doctors are beginning to prescribe it the same way they prescribe drugs like Sinemet. The same is true with the muscles and neural connections impacting speech, chewing, and swallowing. “By keeping these muscles working and toned,” she said, “you’re going to be less affected by the disease less quickly.”
She paused for a moment, saying, “I want to be careful with this because we’re still learning, but there’s some research showing speech therapy can temporarily halt the progression of the disease.” For people in the trenches with this disease, that’s huge.
Speech therapy is hard work. But Michele says levity is an essential ingredient. “As a speech pathologist, you have to have a sense of humor, and it has to be a gentle and kind sense of humor. All learning is based on the principles of neural plasticity—when we create new synapses or build a connection between ones that weren’t previously connected. In order to take advantage of the way we learn, we need some dopamine. We need some happiness. This happiness is essential to healing. As a therapist and a patient, you have to take advantage of that.”
In Michele’s practice, there is no lack of laughter. One of the exercises to help with prosody—when the voice becomes monotone—is what she calls “lion’s face.” “What you’re trying to do,” she said, “is get people to function at their full range of motion. So you ask your patient to open their eyes and their mouth wide, to flare out their tongue like a lion.” It can look silly. But instead of shying away from it, she encourages her patients to lean into the playfulness of it, and they often find themselves making the lion’s face together and laughing.
With many of her patients, she’ll work on “functional phrases.” They’ll practice saying key, daily phrases clearly and loudly. She remembers early on in her practice, when they were in a tiny space with thin walls surrounded by other offices that could hear them, and a man she was working with kept yelling (you have to repeat each phrase ten times), “Where are my shoes?!” She laughed, wondering what the people in the offices beside them were thinking.
Some of her patients come with her to a gym and, with the mission of trying to integrate as much of this work as they can—combining big movements with loud voices, they’ll walk around the gym, flailing their arms while saying functional phrases out loud. She loves her patients’ willingness to go for it, committing to their well being even when it looks a little silly. There’s nothing better than embracing it together.
What Michele loves about PMD Alliance is that we’re “bringing together different providers.” In PMD Alliance’s Movement Disorder Care & Support Ecosystem©, speech therapists are a key part of the network, alongside movement disorder specialists, advanced practice providers, exercise groups, and care partners. The whole team must come together to support the person at the center with a movement disorder. This is how people living or loving someone with a degenerative disease can not just hope for a cure, but can live well today.
For Michele, that’s the best gift—knowing that her work impacts a person’s life right now. She often hears from a patient’s loved ones: “I can understand my husband better!” they might say. Or from her patients themselves: “My daughter’s less worried about me now and we’re having better communication.”
After over a decade of doing this work, Michele hasn’t looked back. “When you’re younger,” she said, “you think you’re brave.” But, laughing, she added, “You discover that what your parents said is true: ‘Growing old ain’t for sissies.’”
She’s honored to work with people who, in the face of challenging diseases, don’t give in and give up: they choose to fight and make the most of their lives. “It really is a privilege to work with men and women who fight this battle because I am not in the trenches; they are. They’re the brave ones.”
Her wish? To support them on their brave journey. “I just want to be there to open up the door a little bit.” They have to do the hard work of choosing to come to therapy; she simply wants to be able to point to the light: There is hope, she tells them. Come, this way.
