Dan Keller 0:03
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. The Parkinson's Foundation recommends building a multidisciplinary team of experts as part of your Parkinson's care, alongside your movement disorder specialist or neurologist. It's important to include allied health professionals, such as occupational therapists, physical therapists, and speech-language pathologists. In this second episode of our Allied Health Spotlight series, I spoke with Melissa Grassia-Chisholm, a licensed speech pathologist and a voice swallow airway expert at The Voice Rehab in Fort Lauderdale, Florida. She dives into some of the speech and swallowing issues that people with Parkinson's may experience, such as soft voice or drooling. She also talks about how these challenges can make it harder in certain situations, like talking on the phone or engaging in conversations comfortably. What are some speech and swallowing issues that a person with Parkinson's may experience?
Melissa Grassia-Chisholm 1:50
You know, Dan, there is actually 89% of patients or individuals with Parkinson's that will develop what we call a hypophonia, or a presbylaryngis, which is a soft voice, and it can significantly impact their ability to speak with their loved ones, to be social out in restaurants, and participate in conversations. And then on the other side of being social, talk about swallowing. So, about 80% of people with Parkinson's disease develop some kind of a dysphagia, and dysphagia is something that we call difficulty with swallowing, that can be in your mouth or in your throat or even in your esophagus. And so another term that you might hear about swallowing would be aspiration. So doctors always ask about swallowing function, because aspiration pneumonia can occur, so that just means that some of the food or liquid might have gone down the wrong pipe, and when over time a little bit of food or liquid goes down the wrong pipe, then you can develop this pneumonia. And we know that anybody that is a little bit older having a bout of pneumonia can be life or death and detrimental to your health, so when you are having swallow issues that also can lead to more medical issues and also social issues. You might not want to go out to eat and drink with your loved ones, gather around the table, right? So, yeah, it can be pretty isolating.
Dan Keller 3:44
And there's also a problem with over-salivation, or just not being able to swallow saliva.
Melissa Grassia-Chisholm 3:51
I'm so glad you brought up saliva. So, saliva management can be controlled by just us swallowing all day throughout the day, but with Parkinson's disease, they can either over-produce saliva or just the brain isn't telling the body that, "Hey, you gotta swallow this, you know, that's kind of pooling up there," and sometimes that can be a little embarrassing, where there can be drool happening. There are some medical interventions that some neurologists do that includes Botox injections to the salivary glands. On the opposite end, you also can have dry mouth, and there's some oral rinses that you can have to help with that, such as Biotene. There's some other things on the market. And when you talk about saliva, a lot of the times patients don't realize that it's in their throat. They might not feel that sensation in their throat, so they can just start coughing, or they could just start having this wet vocal quality, but that means that something's on their vocal cords, like saliva, or maybe their liquids. Yeah.
Dan Keller 5:12
Is that part of the disease that you over-salivate? I mean, Pavlov proved that there's neural control of salivary glands. When the dogs heard a bell associated with food, they started salivating. So, is it really a neural problem also?
Melissa Grassia-Chisholm 5:30
It could be. Absolutely, I don't think that everybody who has Parkinson's will be dealing with this. I have a good handful that have, though. So, it is a characteristic that I see clinically in my practice, and my practice is heavily involved in Parkinson's care because of my specialty area of voice, swallow, and airway.
Dan Keller 5:55
Let's explore a little bit more the social issues. I mean, people have swallowing difficulties, drooling. I assume the soft voice and the salivation could impair conversations.
Melissa Grassia-Chisholm 6:09
Yeah, absolutely. So, even as somebody might be hard of hearing, let's say, you know, that's pretty much everybody, as you get a little bit up there and mature, right? So, when you feel that you can't hear or communicate with your communication partner, whether that be in a social setting, such as a restaurant, or just along with your family gathered around the table, maybe you're going out to church, or in your cards, you know, they like to gather around and have a book club, maybe. If you don't feel that you're heard, then you might not contribute to that conversation. It can be very isolating, because when we talk about the older population, you're battling with someone who might be hard of hearing that doesn't have Parkinson's, and then you're battling with that patient who does have Parkinson's having a soft voice, but with Parkinson's, they think that they're talking loud, but they're not, and they're not articulating, so that's very isolating. Absolutely. And then just socially going out to eat with someone you know, and you have to have a modified diet, such as maybe you have to eat pureed foods, or maybe you have to add thickeners to your liquids, that can be embarrassing, and then your menu choices are not as acceptable, right? It's hard to find pureed chicken on the menu, you know, you might not want to go out, be social, right? Can't go grab a pizza if you're having trouble chewing.
Dan Keller 7:47
How do you talk to family and friends about your problem? How do you introduce it and put them at ease, or, you know, maintain social relationships?
Melissa Grassia-Chisholm 7:57
Yeah, so I think that it's so important for a speech pathologist to build relationships with the family, because when we are treating patients with Parkinson's disease, you know, Parkinson's doesn't just happen to that patient, it happens to the entire family. And it's also a chronic disease, and it can get progressive with your symptoms, whether that be the voice or the swallowing, or even the breathing, right. So we want to make sure that we get to know the patient as early as possible. I even talk about preventative care, where I would recommend somebody newly diagnosed with Parkinson's disease to have a baseline swallow study, have a baseline endoscopy evaluation with either an ENT, which is an ear, nose, and throat doctor, or your speech pathologist might be able to conduct that, because we want to look at your vocal cords and look at your swallow function early, because we know in the literature if you don't use it, you lose it. So we want to make sure that we keep exercising, so things do not become as rapid and progressive as maybe they could be if you just stop, you know. So talking with the family, letting them know, and building relationships on how they can incorporate more conversational opportunities with their loved one. Like, sometimes I hear a wife say, "Well, he hardly talks to me, so this is why his voice is low," and I say, "Well, sometimes women will talk for their loved one, right, because we tend to be social butterflies in nature." So, sometimes we just need to give our loved one an opportunity. So, one thing that I say is, you know, have a little conversation starter book. You can get those on Amazon or anywhere, right? And maybe there are questions in there that you pick one to talk about our topic at the table when you're having breakfast, or maybe in the living room by the chair, and it might be something like, "Hey, remember your favorite vacation, give me the details about that," or "If you had a million dollars, you know what would you do with that?" So, there are some great resources out there to spark conversation, and every time that you open your mouth to speak is an opportunity for you to practice. So, as you're in therapy with a speech pathologist, there's some programs that we can talk about. They're going to give you homework, and there's no better homework than to practice in function and in life, and in your daily routines, and practicing your swallowing strategies and skills. There's nothing better than swallowing food with that, you know.
Dan Keller 11:02
You mentioned some options for managing symptoms. What are some medication and non-medication options?
Melissa Grassia-Chisholm 11:10
So, I think I can really only talk on the therapeutic and clinical interventions for voice and swallow and airway, just because of my license and what I do. So therapeutic-wise we have two very highly researched protocols called LSVT, and that stands for Lee Silverman Voice Treatment, and then the other one is called Speak Out! And that program they have declared in their research that about 90% of participants that are involved in the Speak Out! program report functional communication improvement in their daily lives, so by having a 90% improvement, I think that's pretty high. So right away I would get involved with any speech pathologist that might be licensed, and you can look on their website, Speak Out!, that's the Parkinson's Voice Project, and then also LSVT, the Lee Silverman Voice Program. So, that would be really, really a great start. And then, as far as swallowing goes, you just really want to make sure you've had a licensed speech pathologist look at the swallow under an instrumental evaluation, so that means that you would either go to the hospital or in a clinic setting and have an X-ray video. So that means that we're looking with barium X-ray, and exposure is very minimal when we talk about X-rays with radiation, so it's very safe for you to take a look in that way. It's called a videofluoroscopic swallow study. And the other way we can look at the swallow is with the endoscopy, that's a little tube that goes in your nose, and the camera looks down in your throat—doesn't hurt, but it does feel a little funny—and then you can see a variety of food while that camera is in your throat. So, let's say you're having trouble with just, you know, rice and beans, or maybe you have trouble with your pills going down the wrong pipe or getting stuck. Well, guess what? With endoscopy, you're able to bring in your favorite foods, or even the foods that you're having trouble with, and eat those while the camera is in your nose, and we're taking a look at the function of your swallow, and we're also adding strategies. So if we see that food gets stuck, or if food went down the wrong pipe, then we're able to troubleshoot that and fix it. As a licensed speech pathologist, we're critically thinking, always trying to help the patient, but you know, we don't have X-ray vision, so just watching you eat or drink is just not enough for me to know why you're having troubles with your swallowing. Now, another great thing about the endoscopy, it's called FEES, fiberoptic endoscopic evaluation of swallowing. So, the other great thing about it for Parkinson's is that we can look at your vocal cords too at the same time, so if you're having voice and swallow issues, we want to make sure that there's nothing on your vocal cords keeping you from having a nice, strong, clear voice. So sometimes patients that have Parkinson's and have a hoarseness or what we call a dysphonia, and with that we want to make sure there's nothing on the vocal cords themselves that would hinder you from having voice therapy. So for example, I've found things with my own endoscopic evaluation, such as vocal cord nodules or little lesions on the vocal cords, or maybe there's some tissue issues happening because of reflux, and we can see that with endoscopy also. We can see how their saliva is being managed, maybe their saliva pooling all by the vocal cords—definitely take a look at that. Like we said before, they might not be sensate or sensitive to feeling that in their throat, and unfortunately, I even found some laryngeal cancers that went undiagnosed because they were just brushed off as having a "Parkinson's characteristic" to their voice, whatever that means, that they are just attributing their hoarseness to Parkinson's when really nobody took a look until it was a little too late, and we partner with physicians and get them seen right away. So, so important to take a look.
Dan Keller 16:21
When people are not in the clinic, when they're at home or in a restaurant or something, are there certain maneuvers they can do to promote swallowing—head position or chin position or things like that?
Melissa Grassia-Chisholm 16:35
Absolutely, so swallowing physiology is not a one-size-fits-all, of course. We want to look at every patient individually, but things that you can just generally do are take your time. So take your time in between bites. What you want to do is maybe put down that fork in between bites. Do not go fast, and then you want to have small bites, of course—all the things that your mother told you as a kid: don't eat fast, you know, don't talk with your mouth full, right? And then also following each meal at the end, maybe having a sip of water just to wash things down, or a liquid. Then you spoke about head maneuvers, like postures. You know, the research does show us most recently that postures can actually be causing issues, so you don't want to just generally everybody tuck your chin down, because sometimes your swallow function is worse that way. So we definitely want to look at that during your examination with a speech pathologist. But one thing I know we all do is drink water or drink liquids from a water bottle, or like one of those bigger bottles that are like 16.9 ounces, right? And what happens is we go to tilt that water bottle up and our head goes up, and right away when your head goes up, you start to strain those muscles in your neck, and they're not able to move up and down for the swallow as strong or as well. The range of motion has been lost. So one of the things I always tell my patients is, when you sip from that bottle, take the sip, and then put your head neutral before you swallow it. So take the sip, hold it in your mouth, now get your head neutral, and then swallow. So that will definitely help with water bottle drinking and straws. Straws can be helpful to some people, and straws can be not so helpful to some people. So again, not a one-size-fits-all, but be careful with just adding a straw if you don't usually have a straw.
Dan Keller 18:50
And finally, are there any resources you can recommend for people to look at to manage symptoms to get treatment?
Melissa Grassia-Chisholm 18:59
Absolutely, so definitely you want to find your local rehab clinic or speech pathology clinic—that does not always have to be in a hospital setting, okay? There's lots of rehab sites that are for physical therapy, occupational therapy, and speech therapy. My clinic actually offers virtual therapy, so that another thing that is well known since we've had the pandemic and we kind of had to shut down. The research shows that virtual therapy is just as effective, and even sometimes more effective with the Parkinson's population and voice. That's because patients are more compliant. You know, sometimes it's taxing to get out of the home and to get into a clinic because of transportation or maybe just mobility—maybe it takes extra effort because you need a wheelchair, but that shouldn't keep you from getting your voice therapy. So lots of clinics will offer that virtual option, and we actually have our own virtual clinic if you go to thevoicerehab.com. We also have a free questionnaire there that you can fill out and kind of reflect on your own, looking on your voice symptoms, your swallow symptoms, and even your breathing and cough, so there's some great resources there. And yeah, I would just make sure that you're getting plugged in to your local support groups. We also have, if you're here in South Florida, we have partnered with the John Knox Wellness Center—we have a clinic there, and offer a free Loud Crowd. So if you've gone through the Speak Out! program, we have free classes for you to keep your voice up strong weekly and get involved with any other local opportunities and free support groups.
Dan Keller 20:56
Do you have a nutshell message you can leave people with?
Melissa Grassia-Chisholm 21:00
Oh, sure. Absolutely. So, at Voice Rehab, we like to say that every voice deserves to be heard. So, just use that as your motto: you deserve to be heard. And maybe that means communicating in a different style, a different way than we're used to, but Parkinson's might be something that you're dealing with, or your loved one is dealing with, but remember that that should not take away your quality of life. And voice rehab, swallow rehab will help enhance your quality of life.
Dan Keller 21:42
Great, nice message to end on. Thank you. As Melissa mentioned, one step you can take right now is to find an in-person or online rehabilitation clinic, so you can connect with a speech-language pathologist to help address your speech and swallowing issues. To find a speech-language pathologist, you can search the website of the American Speech-Language-Hearing Association at asha.org/profind, or call the number on the website. Some of these professionals offer online virtual clinics. Our own Parkinson's Foundation helpline specialists can also help to find a professional near you. You can find many resources on the topic of speech and swallowing issues on our website at parkinson.org—just search for speech or swallowing. We also have a previous podcast called Importance of Early Detection of Swallowing Disturbances, where speech-language pathologist Yael Manor of Tel Aviv Medical Center digs deeper into swallowing difficulties. Today's speaker, Melissa Grassia-Chisholm, said she would be more than happy to answer questions from our listeners. You can email her at thevoicerehab@gmail.com. Before we wrap up, we want to recognize Black History Month. Each February, we observe Black History Month in the US. It's a time to celebrate and honor the achievements, contributions, and stories of the black community, including those living with Parkinson's disease or caring for someone who has Parkinson's. At the Parkinson's Foundation, we are committed to providing essential resources and care to the black community this month and throughout the year. We aim to highlight black voices sharing their stories, experiences, and insights on living with PD. 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. We want to thank this episode's podcast sponsors, UCB and Novartis, for supporting our mission 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. Till next time, 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.
