Dr Marisa Lee Naismith 00:05
It’s Marisa Lee here, and I’m so excited to be sharing today’s interview round episode with you. In these episodes, our brilliant lineup of guests will include health care practitioners, voice educators, and other professionals who will share their stories, knowledge and experiences within their specialized fields to empower you to live your best life. Whether you’re a member of the voice, community, or beyond your voice is your unique gift. It’s time now to share your gift with others develop a positive mindset and become the best and most authentic version of yourself to create greater impact. Ultimately, you can take charge, it’s time for you to live your best life. It’s time now for A Voice and Beyond. So without further ado, let’s go to today’s episode.
Dr Marisa Lee Naismith 01:15
Have you ever wondered about the impacts on phonation for those who suffer from Parkinson’s disease? In this episode, we speak with Valeria Gary, who is a health coach and a speech language pathologist working within the healthcare industry. In 2015, Valeria transitioned her career as an SLP to providing therapy to patients with Parkinson’s disease and works as a volunteer for the Parkinson’s foundation in Georgia and is owner of Total Body cognition and South East Parkinson speech services. Currently, there are approximately 10 million people worldwide suffering from Parkinson’s disease. And in our conversation Valeria explains that Parkinson’s Disease is a neurodegenerative disease, which means that it impacts the brain and the patient gradually worsens over time. She tells us that at this time, there are no known causes or cures for Parkinson’s disease. However, with the correct medications and support, patients can maintain a good quality of life. Parkinson’s disease not only impacts the body, but Valeria talks about the many ways it can affect bone donation, such as patients experiencing reduced volume, monotone pitch and breathiness or hoarseness in the voice. She stresses that early intervention is most beneficial for the patient as it is easier to maintain function than to regain some, Valeria describes her clinical work she does with her patients demonstrate some of the vocal exercises she uses along with their desired outcomes and how we as a voice community can create inclusive spaces for Parkinson’s patients to enjoy and reap the benefits of singing. This is a most informative and very important episode but all of us to learn more about this terrible disease. So without further ado, let’s go to today’s episode.
Dr Marisa Lee Naismith 03:57
Welcome to A Voice and Beyond Valeria Gary. It is such a pleasure to have you here. How are you?
Valeria Gary 04:06
I’m doing quite well. I’m glad to be here.
Dr Marisa Lee Naismith 04:08
Yes, you know, we’re going to talk about something that is very deeply personal to me. You know, I’m a bit selfish when it comes to the podcast at times. And I choose my guests based on things that I’ve experienced in my life and that I’m fascinated to learn more about and today it’s about Parkinson’s disease. And my father suffered from Parkinson’s disease back in the 70s and going into the 80s. And I saw that deterioration and I’ve seen firsthand what it can do with people who suffer from this terrible disease. So Valeria, you are a health coach, a speech language pathologist working in the healthcare industry. Your specialization is working with Parkinson’s disease patients, and you also volunteer for the Parkinson’s foundation in Georgia, you’re from Atlanta, and you’re the owner of Total Body cognition, and South East Parkinson’s speech services. Well, so I’m fascinated to learn so much more about you and about your work. But maybe can we just start with your background, and what inspired you to go into the health field? First up.
Valeria Gary 05:35
That’s not a really fancy story. It was an extremely random decision that I made when I was in high school, it was hard for us to like, decide what we’re going to do after high school. And then my guidance counselor just kind of basically handed me this book of career is to say, find your dream. And initially, I wanted to do speech broadcasts, I want to be on the news. And then the book is sent you the major speech communications, and then it talks about how hard it was to get a job in that field. And I was like, Well, I don’t want to work that hard to get a job. So alphabetically the very next thing says speech pathology and said, Oh, they’re great opportunities for this field. Sounds like that’s what I’m going to be. So that’s how–healthcare.
Dr Marisa Lee Naismith 06:10
Okay, so from a TV presented to being an SLP, okay.
Valeria Gary 06:17
Almost 33 years now, so.
Dr Marisa Lee Naismith 06:22
Okay, and then, at what stage of your career? Did you embark on working with Parkinson’s disease patients? Was it something you fell into serendipitously? Or something that you thought, Wow, no, I really loved this field.
Valeria Gary 06:39
There’ll be the second so that was an actual formal decision that I made as I’ve worked with people with Parkinson’s throughout my career, but not as a specialization until 2015. When I started working, where I am now in an outpatient neuro rehabilitation clinic, and we’ve got a Parkinson’s program there. At that time, it was very new. And so I was really enjoying the work that I was doing. And then the Parkinson Foundation had a training called allied teen training for Parkinson’s. That was a three or four day intensive program. Multidisciplinary. So yeah, they were moving to sort of specialists, their people and the rehab community, social workers as a sex therapist, and we all just kind of got together and learned about Parkinson’s and it got me out of my little box of speech pathologists sitting across the table, having someone make sounds. And that’s what really got me you know, interested in specializing more just want to learn as much as I can and treat people kind of more holistically instead of just the the speech and the voice.
Dr Marisa Lee Naismith 07:36
Well, that’s incredible that that you have so many people from different areas coming together to work with those patients. And so what kind of so what kind of training did you have to do then, to specialize with Parkinson’s disease patients? Or were you well equipped or ready to work with those people?
Valeria Gary 07:57
Well, I did training for LSVT, which is Lee Silverman Voice Therapy, that’s a program for speech and waste developed specifically for people with Parkinson’s. It works for beyond Parkinson’s, but that’s the initial intent. And then from there, I was doing that a lot. And then I got training through Parkinson Voice Project speak out program. So the trainings are very intensive programs, but it was mostly kind of like, the hands on experience, and then just being involved with the Parkinson’s community. Volunteering is where I probably learned more about that, that I end up starting a support group, my job PD life, and just, you know, hearing the personal stories, and seeing people kind of go through the progression of the condition, like go back to the most to my education for Parkinson’s toO.
Dr Marisa Lee Naismith 08:43
Yes, and let’s get to the actual disease itself, because a lot of people may not know a lot about the disease and the deterioration that occurs within the patient. And I think the biggest, probably, what would you call it the time that a lot of awareness was drawn to Parkinson’s disease was with Michael J. Fox, right? The he has raised so much awareness, but still, I’m sure there’s a lot of people that don’t understand what the disease is. So can you describe it for us, please, Valeria.
Valeria Gary 09:21
Yes, you’re right, that a lot of people don’t know about it. Although there’s quite a few people that have Parkinson’s disease. So there are about 1 million people in the US right now with Parkinson’s. And that number is expected to increase in the next few years to honestly 1.2 million people.
Dr Marisa Lee Naismith 09:35
Really, is there a reason for that?
Valeria Gary 09:37
As our population ages, so there’s a correlation between aging and Parkinson’s disease. So our population would have more of our baby boomers getting older and so that’s going to increase the likelihood of Parkinson’s disease. Worldwide, here are about 10 million people worldwide with Parkinson’s disease. And yet still, it’s a somewhat unknown condition that if someone doesn’t have a personal experience with it, a lot of times people don’t really know much about it, but it is what we call a neuro degenerative condition. So neuro involving the brain and degenerative meaning that things progressively get worse down is a condition that affects the cells that create a chemical called dopamine in the brain. And there’s this area in the brain that the substantial Niagra where this occurs, if you want to go deep into finding out more about Parkinson’s, the Parkinson Foundation website, Michael J, Fox Foundation website, all the major organizations have a lot of information about kind of like, what it is and how it affects the body. Now, as far as causes, that’s something we still don’t know, there are a lot of studies being done. For example, the Parkinson Foundation is doing something called PD Gene-eration. So that’s g e n e ERATION. And they’re collecting saliva samples from people. And it’s really studying the DNA to see like, you know, what are some factors that come into play with Parkinson’s, we know sometimes there’s a genetic factor with Parkinson’s. And then there’s also some potential environmental things. Sometimes it’s kind of a perfect storm of a variety of things. And sometimes we don’t know why someone has Parkinson’s, so we haven’t nailed down and exactly, this is why people have it. And even diagnosing it is kind of like, a lot of times it’s eliminating other things. So people get tested, they’ll do an MRI to look at the brain and see if there’s like strokes involved and look at the medications. There’s a test called a dat scan that’s looking at the brain. And a lot of times doctors will use that to determine like, gesi definitively, but that you’re looking at the results of that. And looking at that scan, well let them say, Yeah, but what we believe that this is what you have as Parkinson’s, but a lot of it is just looking at all those different symptoms and kind of piecing that puzzle together.
Dr Marisa Lee Naismith 11:38
So can it be misdiagnosed?
Valeria Gary 11:41
Yes, it can. So I would say is probably quite under diagnosed. So sometimes people might just think they have a central tremor, where the central tremor is when someone has uncontrolled tremors. For example, in the hands of other people, it might get dismissed as okay, you’re getting older, or someone’s had a history of strokes that someone might now just assume that as part of the stroke. And I’ve seen a lot of patients have to go through a lot of testing in order to get definitively diagnosed. Because again, it’s kind of like we rule a lot of things out. And we put all these pieces together. So if you have a one that has that either been able to be persistent to get the diagnosis or don’t have access to health care to keep going and getting one test after another test after another lesson, large number of people are probably missing the diagnosis. Because it does take a while sometimes I’ll hear people say, Well, you know, when I look back, I’ve had Parkinson’s probably for about five years, but I was just diagnosed last year.
Dr Marisa Lee Naismith 12:35
Wow, wow. And what are some of those early signs of Parkinson’s? Is there a particular part of the body that is attacked first?
Valeria Gary 12:46
It varies. There’s a saying if you’ve met one person with Parkinson’s, you’ve met one person, because everyone can experience it differently. But if we’re looking at some of the big signs that the Hallmark things, tremor, which is going to be again, kind of as shaking, was one of the first things people think about with Parkinson’s, but not everybody with Parkinson’s necessarily has tremors, especially early on. Some people notice that things are getting smaller, like their handwriting is getting smaller, or when they’re walking, they’re shuffling a little bit, those steps are getting smaller. Some people notice constipation because that digestive processes moving more slowly, the voice itself might get softer in those earliest stages. And then we have balance problems that some people might have. Some people don’t have that until later stages. But those are some of the kind of the red flags when it comes to what we call motor symptoms of Parkinson’s. And then we have the non motor symptoms, and one of the ones I hear the most about is acting out in dreams. So when people are sleeping, they’re thrashing about usually the person doesn’t know it themselves with their spouse and saying, Wow, you know, you’re like really like almost knocking me out with a bed. That’s one of those early signs that people might notice another apathy. So just kind of like this not really having that get up and go can be an early sign of Parkinson’s also, and then hyper hypotension. So that orthostatic hypotension standing up and getting real woozy on standing. And there are other symptoms too, but those are some of the common earliest signs of Parkinson’s.
Dr Marisa Lee Naismith 14:13
With my father, it started with a hand tremor. As far as we know, he may have had other signs now that you’re describing all those symptoms, but he started with the hand tremor, and he’s he was shuffling later on. And I remember walking down the street with him. Once he started walking, he could keep walking and walking and walking. But if he had to stop to cross the road, for him to get moving again, that was a big effort. And sometimes he would end up falling because his upper body had sort of leaned forward into walking but his feet hadn’t moved. And I remember people looking at him as though he was drunk or there was something wrong with him. It was so, so sad. But what is the progression that most people are likely to go through?
Valeria Gary 15:12
That’s hard to say because that’s really individual. And the thing to remember is that Parkinson’s itself is not a fatal disease. So people don’t die of Parkinson’s, they die with Parkinson’s. And some of them of course, we’re going to have Parkinson’s for a very long time and progress very slowly. And some people might progress more quickly.
Dr Marisa Lee Naismith 15:30
Yes, cuz I know my father didn’t pass from Parkinson’s, as you just said, he passed, he ended up having multiple myeloma and had Parkinson’s alongside of that, with medications. And with treatment, can people live a normal life with Parkinson’s disease these days?
Valeria Gary 15:50
Yes, to a degree. So one of the things that we know is that one of the best things for someone with Parkinson’s to do is to get a lot of good vigorous exercise because that does help to delay the progression or slow the progression of the disease, vigorous exercise, so getting the heart rate up, so really exercising, and you’ll, you might start to notice that there are more and more boxing gyms and boxing programs for people with Parkinson’s and other exercise programs. So if someone is diagnosed early on, and they start exercising regularly, and again, doing a vigorous exercise, that does help them to maintain some good quality of life. Now, other things that are medications also help, there are the kind of standard medication is going to be the sentiment of carbidopa levodopa. That is a medication that has, again, you will see most commonly with Parkinson’s, but there are also some newer medications out there to help people to have the effects of the medication lasts a little bit longer, maybe that with the medication, people will have what’s called on times and off times. So on time, the medications working, maybe that rigidity that they normally experienced is better. And then as the medication starts to fade, their system things kind of come crashing down. And they become very rigid, or they have more difficulty walking, more difficulty talking or swallowing. So there’s some medications that help people to keep the medication in their system and that have those big ups and downs. So that helps with quality of life, to having you know, family support is significant. Senior physical, occupational speech therapy is significant for maintaining a good quality of life, because there are adaptive equipment, things that someone might benefit from. So for example, if it takes them a long time to get dressed because of difficulty with fine motor control, an occupational therapist can either show them some ways to be more efficient with getting dressed or show them some gadgets that they can use to help with that.
Dr Marisa Lee Naismith 17:41
And to people have surgery, is that a thing? Because I think did Michael J. Fox have surgery?
Valeria Gary 17:46
So deep brain stimulation is a surgery, that can be beneficial for some people with Parkinson’s,
Dr Marisa Lee Naismith 17:53
Okay, but not not all?
Valeria Gary 17:55
Not all. So what happens often is when someone’s on a Parkinson’s medication for a extended period of time, they develop something called dyskinesias. And so that’s going to be a lot of excessive movement, that it’s hard for them to control. And so deep brain stimulation helps with that, because if someone has uncontrolled movements, it’s going to make it harder to do things like you know, standing up sitting down walking, but someone has, for example, some blood cognitive problems beforehand, they might not be a good candidate for that, that surgery because it can make those cognitive problems worse, if someone has, you know, certain conditions. So is that for everyone? But yes, but there’s a works wonders for people that are appropriate for it.
Dr Marisa Lee Naismith 18:33
Now, let’s go into your work in terms of speech related problems. At what point of time do we usually start to see a degeneration of speech or is that once again, a case by case thing?
Valeria Gary 18:48
It’s kind of case by case, but the softer voice can happen early on, and people won’t necessarily notice it. With Parkinson’s effects we call kind of like a feedback loop in our brain. So when we hear ourselves, we’re able to tell if we’re speaking softly if we’re speaking with a loud voice, Parkinson’s affects that and so people hear themselves speaking much more loudly than they actually are. So, you know, a lot of times people come to me for their initial evaluation, and they’ll say, Okay, tell me why you’re here for a speech evaluation. And they’ll say, My wife can’t hear me, but she’s hard of hearing. Or they say, I’m not loud enough, but I feel like I am loud enough, right? Yes. And that can happen early on. From a therapy standpoint, we’d love to see people when they’re first diagnosed. So even if we don’t keep them in therapy for a long time, we want to get them in to learn the exercises that they can learn to keep those functions going for as long as possible. Usually, though, the patients that come to us are going to be probably more moderate stages, which is unfortunate, but we’re trying to raise awareness with the physicians with the neurologist about the benefits of early intervention with rehab, but oftentimes, it’s not until someone is having significant problems. I mentioned it to them. After that, we get that referral. And it’s never too it was generally never too late for us to have an impact, it’s just easier to maintain a function that is to try to regain some, but we can we can regain some function.
Dr Marisa Lee Naismith 20:12
Yes. So other than just that soft voice, is that the only impact that it has on phoonation? Or does it impact on phoonation in other ways as well?
Valeria Gary 20:24
So that’s kind of the hallmark. Now, with Parkinson’s, often people have what’s called bowing of the vocal cords. So instead of the vocal cords kind of coming together post contact, there’s a little bit of opening, there’s a gap in that space. Yes. And so we have that gap, we’re going to lose some of the voice quality, we’re gonna lose some of the loudness could have some breathiness. But the voice, the other things of that that can affect with Parkinson’s is the intonation so that the highs and lows of the pitch, what I mentioned before b a Parkinson’s kind of makes things smaller, like handwriting and steps, the same thing can happen with the vocal tract and what the mouth so the mouth movements can get smaller, the range of the voice gets smaller and so unchecked, a person’s voice could sound like a like a very kind of mumbling, flat monotone speech.
Dr Marisa Lee Naismith 21:15
That was my dad.
Valeria Gary 21:17
Right? And so in therapy, the exercise we do, we’re trying to keep the flexibility of the vocal cords, get some good closure to get good sound and to have that you know that the highs and lows of speech so that the voice doesn’t sound monotone now getting the mouth movement, so it doesn’t sound like mumbling.
Dr Marisa Lee Naismith 21:33
Yes. So they come to you, how do you work out the treatment plan from that first visit?
Valeria Gary 21:41
So we do kind of a standard evaluation. So I’m going to look at a lot of the different areas I’m going to look at with when it comes to voice like how long for example, can they hold out a vowel sound? What’s that breath support look like? While they’re doing those odds and holding them out? I’m looking like, what’s the breathing pattern? Do I see shoulder hiking every time I take a breath? What’s the posture like? You know, because these are things we might have to address in therapy, if there’s some difficulties with those. I looked at the flexibility we’re doing some glides, sliding up body down. articulation that reading a standard reading passage, having conversation and looking at like how clear is your speech? How does the voice sound within the context of speech? Language? How well are they able to get the words out that they want to express? How well can they follow the directions or follow the conversation that we’re having, I’ll just do a little bit of a screen of memory. Because again, that if someone has a lot of difficulty with memory, that’s going to change how I’m going to address their therapy, as opposed to someone without difficulty with memory, no difficulty with memory, I want to teach you some exercises that I’ve watched you do them, we’ll do a few sessions, and maybe you’re on your way, if you have difficulty following directions or remembering things, I’m going to have to work on that. And tailor those exercises and make sure you’ve got some support outside of therapy as part of the rehab program. And I’ll ask about swallow, always evaluate swallowing when someone comes in. But at least ask you know, about if there’s coughing, choking, reflux, any of those type of things, things getting stuck in the throat during meals? And if so then we’ll want to take a look at that too.
Dr Marisa Lee Naismith 23:12
Does it affect the breathing mechanism? Like the lung capacity, that kind of thing?
Valeria Gary 23:18
Yes. And so that’s one of the reasons why when we’re looking at like that vowel prolongation, we’re looking at how much air can someone get in and out for a speech, because if someone can’t get much air in and out, they’re not going to get very many words out per breath. And if they’re trying to use get out the same number of words per breath as they used to, they’re running out of air in the middle of a sentence, but their mouth keeps going. And then you can’t hear what they’re saying. From a swallowing standpoint, changes with that can affect the swallowing safety. So if something goes down the wrong way, normally, we cough and hopefully we cough hard enough to get that out. Someone with Parkinson’s may have difficulty having that forceful cough. So in therapy, there’s something we do call exploratory muscle strength training, where we’re working on the muscles for exhalation, to get to be able to get a more vigorous calf to inject things that went down the wrong way. And there could be some benefit to from a communication standpoint in time we’re working the breathing muscles.
Dr Marisa Lee Naismith 24:10
Yes. So give us examples of some of the exercises that you would do with a patient. Let’s just say someone comes to you, just to try and increase maybe their volume of this speech, for example.
Valeria Gary 24:25
Yes, so one of the ones might be holding out our sound. So you’re making short postures as good as possible for that patient, taking a breath and holding out like for example, ah, and we’re holding that out, perhaps for as long as they can or for a certain number of seconds. Doing it helps with work or the loudness. It helps with the respiratory muscles that we’re working on cueing them to open their mouth. Why? Because a wide open mouth is going to have a louder production that a mouth that’s clenched. So there a lot of different things with that. We might do some glide. So going from a low note to a high note. Or doing all that with a loud voice, and then becoming back down. Or by go from Middle Voice and low. Ah, so all that took the stability of the muscles and we’re doing it all wide open mouth with bigger, then we might do some talking, again, with a certain level of loudness that we’re looking for. Well, we’ll use a sound, pressure level meter to measure sound. So we’ll set a target for that patience, okay, as you read these words, or these sentences, or you tell this story, you’ve got to stay above this particular target. And what we’re trying to do is teach someone what it feels like to be loud enough, because again, it can’t go by what they hear. But what does it feel like when you you’re producing enough volume? With speak outs program, the word key word is intense, we’ll say each word within Tet, making sure that each word is heard and understood, that also helps to slow down the rate, move the mouth more and get that louder voice out.
Dr Marisa Lee Naismith 26:07
Sort of sounds like to me a lot of the work that we do as singing teachers, except you’re not worried about the beauty of sound, it’s more about getting the sound out. Whereas we want the sound to sound a little bit beautiful, because it’s singing, we need beauty of tone. But a lot of those exercises that you were showing me were things that we possibly would do with our patient or with our patients, with our clients or our students. I’m just wondering whether having a singing teacher on staff would also be beneficial.
Valeria Gary 26:44
But music therapy, yes, is we’ve had a music therapy therapists company come into our practice and support group and do some things. It was fantastic. But it’s funny you mentioned as far as the similarity. So that is actually a barriers, sometimes for voice therapy with people with Parkinson’s because people hear those glides, they think singing, then they become reserved, and like, oh, I don’t want to do that loud because I quote unquote, can’t sing. For that, see, we’re exercising muscles. We’re not an opera. It’s an exercise.
Dr Marisa Lee Naismith 27:14
Wow, so then that fear of being judged, comes into play. They’re fearful thinking, you know, I have to execute this with with a beautiful sound, they start to worry about the aesthetics of the sound rather than just getting the sound out.
Valeria Gary 27:31
Yes. And so we’re always encouraged to like, Okay, we just want that loudness. And it doesn’t matter how it sounds, this is not an audition. This is like an aerobics class, you know, so I’ll try to correlate it to taking the aerobics class versus being the prima ballerina and a show. Like, we’re not trying to be the Prima Ballerina show. When we go to robots, we’re just trying to sweat and we’re moving however we move. So it’s the same thing. We’re moving these vocal cords, however they move, we’re not auditioning to be in an opera.
Dr Marisa Lee Naismith 27:58
Or to be in Hamilton or whatever. Okay, so what is your principle aim or objective with your patients? Or is that once again, case by case?
Valeria Gary 28:11
Well, increasing the awareness of how they’re not as loud as they think they are, that takes a good bit of time. Because again, when someone’s listening, you know, inside of their, when they hear it in their head, it’s always somebody else’s problem, not theirs, because, you know, I just myself just fine, or they’re thinking about the they’re using their normal effort. So that normal average is just that getting them to loud anesthetic that before so after a lot of times, use some visual feedback. So let them see the decibel meter. I’m talking in a tear at one level they’re talking, said another level, just for them to see like, oh, wow, how did you get that decibel meter up to that number? And I can’t get it there. And I said, well, because I’m projecting my voice more. But that awareness does take some some time.
Dr Marisa Lee Naismith 28:53
So when you say time, we’re talking weeks or months?
Valeria Gary 28:57
It depends. But a typical program is going to be about a month long when we’re doing like the more intensive program. So we’re seeing them for a month. Some people are not that are still that as aware they still need that reminder. After that month’s time to for the loudness but at least with the therapy if they don’t remember on their own, or they don’t recognize in their own if they hear the cue, say it louder. They know what to do they know Oh, okay. I’ve got to like, you know, take this breath and project my voice some more.
Dr Marisa Lee Naismith 29:25
Yes. How often do your patients come to you? What does the treatment plan look like in terms of intensity and consistency?
Valeria Gary 29:36
So if they’re doing LSVT Lee Silverman Voice Therapy, typically that’s four times a week for four weeks, it can be extended to be what’s called LSVTX which is two times a week for eight weeks. So both of those are 16 visits their one hour length for each visit. Then after that there’s the opportunity to do like for example, like monthly maintenance type, exercise like group exercise. Is that therapy, but it’s like a group exercise program called Loud for Life.
Dr Marisa Lee Naismith 30:04
Sorry that those first two that you spoke about their one on one?
Valeria Gary 30:10
Yes, it was a one on one individual sessions. Yes. And then once they complete that LSVT has something called loud for life, that where someone can do local group type classes is that a billing insurance type of thing, it’s a basically a group exercise class to maintain those skills. And then it’s supposed to be that the exercises are done daily, even after finishing therapy. So it’s a lifelong process to keep that the vocal function. Now with speak out best to the parks and Voice Project, let’s typically three times a week for four weeks, so 12 visits that are about 40 to 45 minutes. They do those exercises, also online. So some people can come maybe just coming to the clinic two times a week, and then do the exercises online the other days, and speak out. There’s something called loud crowd. And that’s their version of the after you finish therapy, carryover exercises to kind of maintain that function group exercise, and I set monthly for for both of those. But that’s just the places I’ve worked out. I’ve had monthly to some places might happen more frequently, but so it might be someplace by habit every week or every other week. It just depends on the location.
Dr Marisa Lee Naismith 31:20
What age would be the youngest patient that you’ve worked with?
Valeria Gary 31:24
My youngest patient has been in their late 40s? Yeah, so some people do have is called early onset Parkinson’s. And so it’s going to be they get it before the age of 50.
Dr Marisa Lee Naismith 31:35
Wow. Okay, that would be very traumatic and very heartbreaking, I suppose for someone so young.
Valeria Gary 31:41
Right? Yes, that is, now their life expectancy is quite good. People with young onset Parkinson’s, so they tend to have a slower progression of the disease, and they have a good life expectancy.
Dr Marisa Lee Naismith 31:54
Yes. And with Parkinson’s disease, do you find that people may end up with other problems? Because they’re living with this terrible disease? Like, do you see people suffering with depression and anxiety?
Valeria Gary 32:10
Yeah, depression, anxiety, apathy, those are also part of the package of symptoms of Parkinson’s disease, and also the changes in cognition can occur.
Dr Marisa Lee Naismith 32:21
Okay, I read somewhere that it can bring on dementia. Is that correct?
Valeria Gary 32:27
Yes. For some people, yes. So dementia, there’s an association with Lewy Body Dementia for some people. And I don’t know, there’s actual statistics of it. But that’s usually kind of later in the progression. And kind of going back to the people with early onset, they’re less likely to progress into dementia. Also, most of it has it earlier.
Dr Marisa Lee Naismith 32:45
In Australia, there was a program, there was a choral program, that I think it was a research program, where they had choirs set up for Parkinson’s disease patients, I’m not sure of the outcome of the research, or why they did the research. But I would imagine it’s to see if there was any benefit for the patient in terms of improvement of speech. Do you know of anything like that?
Valeria Gary 33:15
Yes. And I can’t quote the studies by Harvard studies that looked at singing and Parkinson’s and there have been some good outcomes, because as you mentioned, those exercises are similar to what we do in therapy. I’ve had people ask me, like, Oh, can I just do a Parkinson’s choir? So doing my my, like speech therapy exercises? And I always say, Well, you know, you should definitely do the Parkinson’s part. Because there’s so many benefits to being in a group into singing and the joy with that, it doesn’t completely replace the speech exercises, because those exercises have been studied. As far as like the number of repetitions that are done, the intensity that that’s done, outcomes data that we have is based on doing those things repeatedly. In singing, you might apply that just a few times and a song, but when you’re doing your exercises, you might be doing them 10 times in a row. So there’s a difference between that.
Dr Marisa Lee Naismith 34:01
Yes, yes. And I imagined to the mental and emotional health benefits of being in a choir. Being a part of a group and that feeling of being a part of a community that confidence and the happiness and the joy that it would bring people.
Valeria Gary 34:25
Absolutely and even like now with with COVID, some of those groups are a virtual instead of being in person and they’ve been you know, it’s been beneficial to the Parks and Voice Project had recently had a singing–I must say sing with PD, but I maybe calling it the wrong thing. But they would send everyone like, but the lyrics of the song and the music and the head everyone record their own version. They put it all together into like this choir presentation. And there are other organizations like local ones that have buyers that have virtual programs.
Dr Marisa Lee Naismith 34:55
So have you seen the field progressing over the years? Even the work that you’re doing in the field in general?
Valeria Gary 35:03
Absolutely. We’ve know so much more now. I mean, you mentioned it was in the 70s and 80s, when your father had Parkinson’s, I’m thinking how much more we know about Parkinson’s, and how much more we’re doing for people with Parkinson’s since that time, when I first started in the field. So what had Parkinson’s we basically give them what’s called a pacing board is this like, this wood board was a ruse in it. And we’re tell them to touch each block with every word. Because no matter how the voice was, the speech will be kind of mumbling. That was our way of stopping someone from mumbling is to talk like this and touch the square as you talk. No, that’s the what we learned to do. And that’s all we knew how to do. And of course, nobody walked around with these square blocks in our hands to touch nor did anyone want to talk that way. So yes, we’ve come a very long way.
Dr Marisa Lee Naismith 35:55
So do you find that with the patients that they can speak quite normally? Do they go back to a place where they almost have normal function?
Valeria Gary 36:06
From a speech standpoint, yes. Sometimes when I do an evaluation, and first I’ll test people without telling them what I want them to do. I’ll just say like, you know, hold up this or sound or read this passage and just say these words, then I’ll go back, and I’ll show them how I want them to do it. And a lot of times, you’re like, they’re a care partner, spouse who was with them. They’re always like, Whoa, that is amazing. Like, I haven’t heard that voice in so long. Like, that sounds like my husband sounds like my wife. Because it’s in there. It’s just kind of bringing that out.
Dr Marisa Lee Naismith 36:38
Yes. Do you do a recording like a before and after?
Valeria Gary 36:42
Yes. People here–
Dr Marisa Lee Naismith 36:44
That would be amazing.
Valeria Gary 36:48
It is. And sometimes people aren’t sure if they’ve made progress. And then we listen to that initial recording where they were mumbling the voice is real soft, monotone, and they’re like, Wow, that I have made progress about this. Sometimes it’s hard to hear your own progress. Unless you’re faced with that before and after
Dr Marisa Lee Naismith 37:06
That work for you must be so rewarding that you’re doing work that is truly helping people.
Valeria Gary 37:13
Yes, yeah, I used to always love working with people with aphasia, which is a language disorder that people might have after stroke. And I still love that. But that’s, you know, seems like something so concrete, where it’s like, I just have modeled something someone does it and boom, like that automatic, almost progress really is fascinating not to say that it goes from me just telling someone to be loud, and they do it and they go on their merry way. But just, you know, tapping into that and helping people to find that they’ve got all that voice inside of them. That’s how Parkinson’s kind of took over my previous speech therapy passion.
Dr Marisa Lee Naismith 37:49
Yes. And does your work in with the rehabilitation program at the hospital? Is that different to the work that you’re doing for the Parkinson’s foundation and work that you do outside of the hospital?
Valeria Gary 38:02
Yeah, so at the hospital, I do the right therapy. So I’m doing evaluations and I’m doing treatment. Outside of the hospital. On my own, I do maintenance therapy. So I don’t call it therapists, but maintenance exercises. So people might come to me after they’ve had therapy somewhere, but they’re kind of bored with practicing on their own. And so I’ll, I’ll cue them during their practice. There’s a Parkinson’s gym now, it’s called the Center for Movement Challenges. So it’s not just Parkinson’s was also multiple sclerosis, that has boxing programs, exercise classes, etc. And I do a speech and voice exercise class for them. That’s a virtual class that we do. For the foundation, I want to Chapter Advisory Committee. And my role there is to expand everyone’s knowledge in the community about Parkinson’s and what the Parkinson foundation can offer. I helped put together programs of Recently we did one for African Americans and Parkinson’s trying to raise awareness about the lack of resources for African Americans with Parkinson’s. You know, a lot of times when people think of Parkinson’s, they think of white males and elderly white males. And so, you know, even doctors, sometimes, that’s where they’re thinking of someone and maybe a young black female comes to them with some tremors or some complaints. They’re not thinking about Parkinson’s because they have this, who has Parkinson’s.
Dr Marisa Lee Naismith 39:21
So they have a stereotype.
Valeria Gary 39:24
Exactly, yes. And then we look at health, you know, just kind of disadvantages that disparities that people face. Then you’re you’re trying to, again, raise awareness so that doctors are more informed. We recently had a program for the LGBT community. And also, you know, what there I learned a lot as far as like some of the health disparities that that community faces and, you know, at Parkinson’s to that, then some people really struggle with a lot of things. And so again, like Dr. Snell, like these are some things to look for. And also for the community to know here are some resources. Here are some places you can go where you’re going to get equitable to treatment. So that’s what we do with our committees, again, spreading that awareness.
Dr Marisa Lee Naismith 40:05
So that is the main focus of that website, the Parkinson’s Foundation in the work that you do.
Valeria Gary 40:13
Prior to this, the committee that I’m on, there are quite a few committees, but I’m the one that I’m on is our local doctors, therapists, community, churches, assisted living facilities, getting the word out the Parkinson foundation itself. Yes, I’m working on a cure for Parkinson’s, doing a lot of research, you know.
Dr Marisa Lee Naismith 40:35
Are we close to a cure?
Valeria Gary 40:37
I do not know that we’re close to one by though that all the Parkinson’s foundations are working together. And I think that’s the goal. Let’s take–
Dr Marisa Lee Naismith 40:45
Globally? Is that a Global thing?
Valeria Gary 40:48
Oh no, with the major ones in the US. And I imagine it’s probably a global presence. I just don’t the ones here in the US. Yeah. So some of the things we’re doing, they’re collaborating together.
Dr Marisa Lee Naismith 40:59
And so what are some of the resources then that are available for people?
Valeria Gary 41:04
So there are tons of resources, there’s an overwhelming amount of resources, I usually tell people to start, like, again, I’ve taught speaking to the Parkinson Foundation website, but the other websites have a similar thing was look for whizzes newly diagnosed, that’s kind of going to be the information that you want. Just a little bit of information, you want to know what you can do to be proactive. So a lot of times I’ll send people there, you don’t want to read like, what’s going to happen to you in 30 years, you know, when you’re first diagnosed is just this to hear now, what do I need to do now? what hope is there for me now? Where can I find some exercise classes? Where can I find a specialist position, because a lot of times people might get diagnosed by the neurologist, but they still gonna want to see a movement disorder specialist, there’s a difference. So it’s a it’s a neurologist with a specialty and movement that disorders as opposed to a general neurologist, learning about nutrition, that’s something else that’s good to know right away.
Dr Marisa Lee Naismith 41:58
Does that make a difference?
Valeria Gary 41:59
Yes, there was some studies. Yeah, there’s no like, quote, unquote, Parkinson’s diet. But obviously, you know, the healthier the diet, kind of the combination of the Mediterranean diet is one that you’re good at about the mind diet of trying to remember what else is a combination of both the Mediterranean as part of that, but basically, you know, you’re, you know, lots of vegetables, your fruits, your lean proteins, you know, the whole grains of the way that, you know, we’re all probably should be eating.
Dr Marisa Lee Naismith 42:28
We don’t always. Or some never.
Valeria Gary 42:34
The less inflammation in your body, the more managed other things are, then the better are our symptoms.
Dr Marisa Lee Naismith 42:42
Yes. And what about, you stated that the dopamine levels are diminished with Parkinson’s disease. Does eating foods that give you that dopamine high, like eating sugars and some of those foods that give you that fast energy release? Do they help?
Valeria Gary 43:05
I don’t know. I don’t. It hasn’t been recommended. But I don’t know how that affects people with Parkinson’s. Yeah.
Dr Marisa Lee Naismith 43:13
No, I was just talking about dopamine hits, I think of cocaine and, and drugs like that, that they give those high dopamine hits.
Valeria Gary 43:24
Right. But that’s an upbringing that can produce the dopamine. And so we have a brain that produced that dopamine. So I don’t know what happens there.
Dr Marisa Lee Naismith 43:31
Yeah. Well, we’re not encouraging or endorsing that, by the way, it was just something that came to mind. So what are you up to next?
Valeria Gary 43:41
Well, I am in the process of trying to follow Parkinson Voice projects model, their model for therapy is that they do a pay it forward. model. So when people come to them for therapy, they’re not charged with therapy, they don’t build any insurance, they don’t build a patient, or the patient finishes the therapy, they pay it forward for the next person’s therapy through donation. So I’m trying to put that together at the gym, where I’m working.
Dr Marisa Lee Naismith 44:06
Really? And how’s that going?
Valeria Gary 44:08
Well, we’re in a process. First, we have to get donations. So they have to get some to kind of get started. But that’s that’s something that we’re hoping to implement. I would imagine to be sometime next year before that actually happens, but that’s what I’m working on right now.
Dr Marisa Lee Naismith 44:22
Do you have any goals or aspirations for the field? Personally or professionally?
Valeria Gary 44:29
I guess one of my goals will be for the field is for all of us to kind of make sure that we’re getting outside of our speech therapy box. Now a lot of times we learn to do table therapy sitting across a table from someone having them to do something and it’s that kind of that back and forth drill after drill after drill, and maybe getting more involved with like movement and like moving the whole body as part of our therapy, getting involved with you know, helping people to overcome any health disparities that they have helped them understand that The impact of nutrition, all those things we could do within our scope of practice, we have to be careful, of course, but there’s a lot of things we can do within the scope of practice. So yeah, so just coming outside of our boxes, to really advocate and to really, you know, give that whole body approach to do what we’re doing.
Dr Marisa Lee Naismith 45:17
Yes. And what about the singing voice community? Do you think that there’s anything that we can do, or learn further about that we can help to raise awareness and to give Parkinson’s Patients a voice?
Valeria Gary 45:32
I think the more opportunities you give people with Parkinson’s to participate in singing, so the other outreach, the better. I know, some singing communities are specific to like, maybe you need to have a particular skill set for participating in that. But if there’s something that’s just open to the public, directly, you know, getting into contact with people and you know, this is a safe place to come sing, we’re not You’re not going to have got the solos in front of anyone, you’re not going to be judged. The more opportunities that people have the better for that.
Dr Marisa Lee Naismith 46:02
Yes. And obviously that’s going to once again, have those mental and emotional health and well being. Positives as well. Is there anything that you wanted to add to our conversation? Is there something that you feel that we we haven’t included that’s important?
Valeria Gary 46:21
Technology, there’s a piece of technology called Speech Vive, I have not had personal experience with it. But what it is, is it’s a wearable device, and it detects when someone is starting to talk or when a person starts to talk, it puts like the simulated chatter in their ear. So the person wearing the vise can hear this noise. No one else cannot hear it. What happens when, if you’re in a loud environment? What do you do with your voice? You talklouder, right?
Dr Marisa Lee Naismith 46:46
Valeria Gary 46:48
Yes. So with this device, someone starts to talk, we hear this noise, and there’s a tendency to talk louder. And that’s something that’s being used to help people with Parkinson’s to overcome that soft voice. So I’d look at it as like a prosthetic device. So we still want someone to exercise we don’t want to take away the exercise. But if someone for example, maybe struggles with remembering to use the loud voice, that’s something that could be beneficial to them in different settings.
Dr Marisa Lee Naismith 47:15
Well, it’s funny, you should say that because yesterday I was in a class, I was just sitting in on a class. And we call them speech pathologist here in Australia. And he was giving a lecture and he was saying in terms of raising volume, and people say, twice, and I can’t talk. Sometimes he will turn Muse like he will turn some noise on and then ask them a question and automatically that they will raise their voice to try and get over it.
Valeria Gary 47:49
Yes, I think it’s called artifact. I think that’s what it’s called.
Dr Marisa Lee Naismith 47:53
Yes. But even some of the things that you said like coffee, they say, well, we can’t make a sound. And you can you cough? Can you put your hands up against the wall and push that wall like, Ah, well, tricking the person into making sound. Yes, it’s all very interesting. But Valeria, look, thank you so much for your time, I really appreciate that you’ve come on the show and shared your wealth of information in this field. And we’re going to share your links with our listeners. So if they want to learn more about Parkinson’s disease, your work within the field, and even if they want to be a part of the program, or give a donation perhaps, for your foundation and for the work that you’re doing, they can find you there. And no, I wish you all the very best. And thank you so much for your time.
Valeria Gary 48:50
Thank you for having me. I really enjoyed it.
Dr Marisa Lee Naismith 48:52
Thank you. Bye.
Dr Marisa Lee Naismith 48:58
Thank you so much for listening to this episode of A Voice and Beyond. I hope you enjoyed it as now is an important time for you to invest in your own self care, personal growth and education. Use every day as an opportunity to learn and to grow so you can show up feeling empowered and ready to live your best life. If you know someone who will also be inspired by this episode, please be sure to copy and paste the link and share it with them. Or share it on social media and use the hashtag #AVoiceAndBeyond. I promise you I am committed to bringing you more inspiration and conversations just like this one every week. And if you would like to help me please rate and review this podcast and cheer me on by clicking the subscribe button on Apple Podcast right now. But I would also love to know what it is that you most enjoyed about this episode and what was your biggest takeaway. Please take care and I look forward to your company next time on the next episode of A Voice and Beyond.