Dan Keller 0:08
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Among the many muscles affected by Parkinson's disease are the ones necessary for forming speech and for swallowing. They may become weak, resulting in a softer voice and difficulty swallowing—both potentially limiting social engagement, such as dining out—and swallowing itself, presenting choking danger. But with proper training and practice, people can regain and retain better speech and swallowing. I spoke with speech-language pathologist Samantha Elandary, founder and CEO of the Parkinson's Voice Project, about their Speak Out therapy program. She said that by doing ongoing, short daily practice, people with PD can improve their speech volume, articulation, vocal quality, and intonation, as well as reduce drooling and improve swallowing. Later in the episode, she walks us through a quick speech exercise that takes just a few minutes to do. She started the conversation by laying out how common problems of speech and swallowing may first appear.
Samantha Elandary 1:54
90% of people with Parkinson's will struggle with their speech and their swallowing. In terms of speech, some of the early symptoms that people notice is that their voice becomes softer. It can become raspy. They notice that they're trailing off at the end of those sentences. So those are some of the early signs. In terms of swallowing, though a little bit more subtle, maybe clearing your throat more often, not able to manage your saliva as well as you used to. We have a number of people that say, "I feel like I have more saliva than everybody else," and that's not it. And people don't always connect that with a swallowing issue. And then also coughing, whether during a meal or it could be after the meal, which is a little bit tricky for people to identify. I also find that patients and families don't realize that the same muscles we use for speaking are the muscles we use for swallowing. It's important that we make that distinction, because speech therapy for people with Parkinson's is not only about needing to be heard and understood, or wanting to be heard and understood, it's also about protecting your swallowing.
Dan Keller 3:12
Is there actually some sialorrhea, more salivation, that occurs with Parkinson's?
Samantha Elandary 3:21
No, it's not that. So the big problem with Parkinson's in terms of speech and swallowing is that speaking and swallowing is normally an automatic behavior. So as we talk with our family and friends, we're really not thinking about our breath support. We're not having to worry about, are we trailing off at the end of our sentences? Are we loud enough? We're talking just automatically, without really conscious effort, unless we're giving a presentation or right now, when I'm being interviewed, you know, I'm really thinking about it. But normal, a normal conversation, it's automatic. Same thing for swallowing. We're talking about, you know, before Parkinson's, eating a meal, eating popcorn at a movie, walking down the street, talking to a friend, eating an ice cream cone—all of that is happening without conscious effort. But automatic movements are highly dependent on dopamine, and by the time someone with Parkinson's has any symptoms, by the time a tremor shows up in Parkinson's, they have already lost 60 to 80% of their dopamine-producing cells. And so since automatic movements—not just speaking and swallowing, but automatic movements like writing, walking, swinging our arms when we walk, getting out of a chair—we would normally do all these things without really having to think about them. Because people with Parkinson's don't have enough dopamine, they are struggling; anything that was automatic is not working. Going back to your question about, do they have more saliva? No. What happens is, humans normally swallow our saliva throughout the day automatically, and so since the automatic motor system isn't working for people with Parkinson's, they are having to intentionally try to swallow. The good part—I mentioned the automatic motor system—the good part is that humans have two motor systems. We have the automatic motor system, but we also have the intentional motor system. The intentional motor system is what we use like right now, during an interview or during a presentation. If I were in a job interview, I would be using my intentional motor system. I would be concentrating more, I would be more deliberate. The intentional motor system is not as dependent on dopamine, and that is why it works, and that's why the program that Parkinson's Voice Project developed, the Speak Out therapy program—the basis of it is to speak with intent, learn to use the intentional motor system, convert automatic speech to intentional speech.
Dan Keller 6:23
Is this particularly taxing, having to attend to this? If I had to think about blinking all the time to keep my eyes wet, that would take a lot of my effort, I would think.
Samantha Elandary 6:37
It takes a lot of concentration, and it's one of the reasons that people with Parkinson's, no matter how much speech therapy they go through—and this goes for physical therapy, too—no matter how much therapy they receive, they have to establish a daily home practice routine. They have to be working on it every day, deliberately working on it and really concentrating on speaking with intent. We like to say the intentional motor system is like a light switch. It's available to you. I tell my patients, it's available to you at all times, but it's not going to work unless you turn it on. And so that is the tricky part, and with the progression of Parkinson's, it can become more and more challenging, which is why we want anyone with Parkinson's who notices any changes in their speech or swallowing—or maybe they don't notice it, maybe their care partner notices it—we want them to have a Speak Out evaluation right away, because these issues are much easier to treat if addressed early on. So let's say somebody is talking and they think they're speaking normally, but they notice that the person they're talking to is leaning in, right, or asks them to repeat. In the Speak Out therapy program, we're training them to become aware of these cues, and when they see that happening, or when somebody asks them to repeat, then they know, "Op, I've got to flip the switch. I need to speak with more intent." And the more you practice it, the better you get at it.
Dan Keller 8:28
Are there sensory deficits where they don't really feel that there's a problem? And then there's also the aspect of apathy that is part of Parkinson's. So how do those affect what you're discussing?
Samantha Elandary 8:45
It's very serious, actually, for the Parkinson's population. So there is a sensory deficit where people with Parkinson's, when they are speaking, they actually feel like it's loud enough, it's clear enough. Often, when new patients come in for a Speak Out evaluation, they will say, "You know, I'm only here because my doctor told me to come," or "I'm only here because my wife insisted on it. She thinks I have a problem with my speech, but I know it's her hearing." So in the Speak Out evaluation, part of the protocol is to do video recording, audio recording, so that the patient can hear what their voice sounds like to other people. And it's actually a shock to most people. They go, "I can't... I mean, I'm listening to it, you know, I know that that's me, but it doesn't feel that way to me." If you can imagine, there's a lot of frustration between the patients and their care partners, especially when the patient feels like they're speaking normally or walking normally, writing normally, and the care partner is saying, "No, you know, that's not it." So there can be a lot of tension between the two of them. So it's almost like a light bulb goes off, or it's an "aha" moment. Oh my gosh. You know, they have to understand the sensory deficit, and then that tension goes down, and then, okay, we can focus on what to do about it. The other part you mentioned about motivation: dopamine, besides highly impacting our automatic movements, it's also responsible for our motivation and our drive to get things done—to get up in the morning and get up and get dressed and do what we need to do. And so people with Parkinson's have to exercise—not just their speech and swallowing, their body—they have to really concentrate and exercise every single day. But they don't have enough dopamine, which means they are struggling with motivation, and that's really hard for people. And again, another "aha" moment for care partners. I hate to say that sometimes I might have a family member say, "Oh, she's so stubborn," or "He's lazy. He knows what he needs to do, but he won't do it." And it's not laziness, it's not stubbornness; it's that they don't have the chemical, the neurotransmitter dopamine. They don't have enough dopamine that will motivate us. And I like to tell the families: think about it. How many times have you made a New Year's resolution, "I'm going to exercise and eat right," and how long does it take before we stop doing that? But imagine having to exercise every single day or risk your voice disappearing? You start to cough on your food. My patients say that they cannot go more than three days without doing their exercises. That's how short of a time it takes. With Parkinson's, it's not that they're doing anything wrong—the treatment is wonderful—but with Parkinson's, you have to exercise every single day. I like to say that people with Parkinson's, they don't need intensive therapy; they need intensive practice. So the goals in Speak Out therapy are to teach the patient the exercises, teach them about intent, help them understand the difference between the automatic motor system and intentional motor system—they really need to understand that—and then help them establish a consistent home practice routine. And those are the big goals in Speak Out therapy. And if they do that, they will be able to not only regain their ability to speak and to swallow, but they will be able to retain it. And that's what we want. We want every person with Parkinson's... our motto is, "We're in it with you for the long haul." So that's not just a month or a year or two years; our patients stay in our program for the rest of their life.
Dan Keller 13:15
How long does it take to do the exercises every day?
Samantha Elandary 13:19
The home practice, usually 15 to 20 minutes. Parkinson's Voice Project, after the pandemic, we were really worried about our patients because we had to shut down the clinic. They weren't able to come to their weekly classes during that time. And so what we started doing, we started hosting Speak Out home practice sessions on our website free of charge, and to this day, we are still doing them. We conduct them five days a week. They are on our website at parkinsonsvoiceproject.org. They're also streamed on Facebook and YouTube. People with Parkinson's, they need to block out, I would say, 45 minutes or an hour every day. They need to put it on their schedule and say, "I'm going to do this," because it will make such a big difference for them.
Dan Keller 14:17
It sounds like making it just a part of daily routine—specific time of day, or keying it to some event during the day. "After you brush your teeth, do this." Does that help?
Samantha Elandary 14:30
Absolutely, yes. Pairing it with something that you do every single day. So a lot of our patients, you know, eat breakfast, go get on the computer and do your exercise. I also think getting your supplies ready, so you have a nice place where you have your computer or your iPad, you know, a consistent place with a comfortable chair, and you can have your glass of water. With speech, if somebody goes out to dinner and the waitress doesn't hear them, and they point to the item on the menu that they want, it doesn't necessarily connect to them that "I'm the problem," you know, that "I have a problem." It could be, "Oh, the restaurant was too noisy. The waitress wasn't paying attention." So it's a real challenge. We're trying to do everything we can to educate patients and families and SLPs that people with Parkinson's, they need help, and we want them to have an evaluation as soon as possible. If they don't need therapy, we certainly won't recommend it if they don't need it, but it's nice to get a baseline too.
Dan Keller 15:43
You've kind of alluded to the social aspects, which is dealing with a waiter or waitress, dealing with a partner, I assume friends and social groups. That's one problem. But what's the overall safety message here about swallowing and speech?
Samantha Elandary 16:01
Now I can tell you at Parkinson's Voice Project, we run a clinic in Texas, so we are managing over 500 patients, people with Parkinson's. And I can tell you that our patients, majority of them, are not ending up with feeding tubes. But what I'm seeing a pattern of is that in the last couple weeks of their life they could have trouble. But it's not anything like... I was working in a hospital in the 1990s, okay? At that point, somebody could live the last five years of their life not being able to communicate effectively and not be able to swallow, have to have a feeding tube, multiple hospitalizations, all of that. We do not see that when patients go through therapy and they keep up with the home practice. And you brought up the socialization part. Part of the Speak Out therapy program, they need to be with other people who are experiencing the same struggles, but I would also say they need to be with a group of people who are really also being proactive in managing Parkinson's. So they're with a group of people who are really trying to incorporate intent into their everyday life—speaking with intent, swallowing with intent, walking with intent, taking a shower with intent, brushing your teeth—so they can be with them, they can share resources. And the Speak Out classes are led by a certified Speak Out provider, so they are also getting the reinforcement that they are doing the Speak Out exercises correctly, and they also have that motivation. As we know how hard it is to exercise right, eat right, reduce our stress and do what we need to. And people with Parkinson's have so many challenges that we need to help them. They need that encouragement and support. And if they really do receive that, then it is possible for them not only to regain but retain those speech and swallowing—like we say, "for the long haul" is what we want.
Dan Keller 18:23
How can people find a Speak Out therapy program?
Samantha Elandary 18:28
Our website, parkinsonsvoiceproject.org. Well, first of all, they can start practicing right away. But then there is also a registry of certified Speak Out providers, and so they would just type in their city, their state, or their country where they are. So our goal is not just to help people in the United States, but to help people all over. We still have a lot of work to do, but we are diligently working on it.
Dan Keller 19:01
Can you give me an example, maybe a couple of minutes verbal demonstration of a speech exercise that people would do?
Samantha Elandary 19:10
Yes. So there are six Speak Out exercises, and the first one is called a warmup, and I will go ahead and demonstrate it. So it's "May, Me, My, Mo, Moo." The reason we use the "M" sound is because the "M" is the most forward sound. And what we're trying to do, we're trying to get... the name of the program is Speak Out. Parkinson's wants to bring the voice back to the back of the throat. We are trying to project it forward. So for the warmup, we use the "M" sound. We're trying to get the voice in front, in front of you. Another exercise is we do an "ah," which lots of voice therapy, lots of different programs, we use them. "Ah." One thing I will tell your listeners is that we do not hold the "ah" longer than 10 seconds. So our main concern is not with the length of the "ah," even if it was only three or four seconds, but we produce a nice, clear sound. That's what we want. We're trying to coordinate the breathing muscles with vocal folds. We do a glide where we're gliding up and down a scale. And this is interesting, because this goes to the control and being very intentional. When we first treat new patients, they might just say, "Oh, I can, you know, I can raise my pitch," do something like that. But it's not about that. It's a steady "ah" and a glide up, so it would be "ah," and then you purposefully stop, and then you go... so very controlled, very important. That exercise is very important for inflection patterns. People with Parkinson's can end up with a monotone voice. We don't want that. We want their voice to be colorful. And also it can help with swallowing, as we know the vocal folds are the last protection of the airway, and so we want to exercise those muscles. We also do some counting, we do reading, and then conversation exercises. And one exercise that is really easy—it's not a specific, I would say, a specific Speak Out exercise, but it's something that everybody can do, and I like it when my patients will do this with a care partner—is counting back and forth. So if I were to go "one"—and I'm really thinking about throwing it up and forward—"one," and the care partner would say "two." And just counting back and forth is a wonderful, easy exercise. Sometimes my patients will just do that one. Let's say it's Thanksgiving Day and they're really busy, you know, they want to do something really quickly, or they're about to go out to dinner—in the car, they can do something like this to warm up their voice, counting back and forth, the days of the week back and forth. The main thing: speaking out.
Dan Keller 22:35
What message can you leave people with Parkinson's and/or their care partners with—sort of a nutshell compilation of what we've been talking about?
Samantha Elandary 22:46
I want people with Parkinson's and their care partners to know that there is hope for improving speech and swallowing, that it can improve. It's not easy; I do want them to know that. And we're very clear during a Speak Out evaluation to be very upfront about what it's going to take in terms of the daily home practice. But we are here to help you. We have a lot of resources on our website to help, and we'll do everything we can. Like I said, "We're in it with you for the long haul." We're working as hard as we can to train and certify more speech-language pathologists. We want every person with Parkinson's around the world who wants to get better, who wants to put the work in and wants to get better—we want them to have access to a certified Speak Out provider.
Dan Keller 23:55
To find out more about the Speak Out therapy program or to find a certified Speak Out provider near you, go to parkinsonsvoiceproject.org. You can also visit our website at parkinson.org and search for "speech," and you'll find a blog post, fact sheet, and book on speech and swallowing. As always, our PD information specialists can answer questions and provide information in English or Spanish about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. If you'd like to leave feedback on this episode or let us know what other topics you'd like us to cover, visit parkinson.org/feedback. Be sure to subscribe and rate us on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO. That's 1-800-473-4636. Thank you for listening.
