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Parkinson’s Podcast – Episode 7, Transcript

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[00:00:00] Wayne: Exercise your voice as well as your body.

[00:00:05] Anna: Communication is vital for all parts of life. From doctors visits, grocery shopping, to staying connected, to loved ones.

[00:00:14] Wayne: I’ve done a pretty good job of exercising my body, but unfortunately I fall down for some reason and exercising my voice.

[00:00:21] Anna: Parkinson’s disease can cause issues with speech, concentration and cognition, which can make communication harder.

[00:00:28] Dr. Mathur: Communication is a way to be connected and to socialize. And I think that is important because loneliness plays a big factor in quality of life.

[00:00:37] Anna: In this episode, we’ll talk to a Parkinson’s speech and language pathologist and people living with Parkinson’s about common issues with speech and the ways to improve communication after a diagnosis.

[00:00:49] Dr. Mathur: My thoughts tend to get ahead of my mouth, which then aggravates my word, finding difficulties and the expression of what I wanna say. I think that’s really important to just breathe slow down.

[00:01:00] Anna: We’ll also talk about swallowing difficulties and ways that speech therapy can help.

[00:01:06] John Dean : If you’re having problems, taking your pills that’s an immediate reason to get a swallowing evaluation from a speech language pathologist.

[00:01:14] Anna: The Parkinson’s disease podcast was created for educational purposes only. It is not a substitute for formal medical advice. Please talk to your qualified healthcare provider for personal medical diagnosis and treatment.

Welcome to the Parkinson’s disease podcast. I’m your host, Anna Stoecklein.

[00:01:36] Kat Hill: In terms of communication my short term memory is definitely impacted by Parkinson’s. My speech remains fairly clear and strong, but I do definitely have processing challenges.

[00:01:52] Wayne: I was having trouble with my voice. My wife was complaining about, she couldn’t hear me and I thought I was speaking loud enough, but I wasn’t.

[00:02:00] Dr. Mathur: The actual expression of the words is sometimes difficult for me personally, because my voice has gotten softer. So in a large crowded situation, trying to interject myself into conversations can sometimes be difficult because of that.

[00:02:14] Anna: Kat Hill, Wayne and Dr. Mathur are all people living with Parkinson’s we’ve heard from in previous episodes, they’re on different journeys in life and with Parkinson’s, but have all struggled with the ability to talk and to be heard.

[00:02:28] John Dean : The most commonly reported issue I would say is probably the quiet voice that many people experience.

[00:02:35] Anna: This is John Dean.

[00:02:37] John Dean : I’m a speech language pathologist I’ve been practicing just under 20 years. And 15 of that have been working exclusively with people with Parkinson’s and related disorders.

[00:02:48] Anna: Often referred to as SLPs speech, language pathologists, like John Dean could be an important member of your Parkinson’s care team.

[00:02:57] John Dean : There’s some basically attention deficits and there’s issues with maintaining focus sometimes that can influence the speech with very common word retrieval problems. What we call like a word, finding issue, tip a month tongue problem. And it could also be maintaining the ability to follow a conversation.

[00:03:14] Anna: People with Parkinson’s may begin struggling with things like speaking at the correct volume and paying attention to what other people are saying.

Kat Hill says she finds it hard to have important conversations and busy environments.

[00:03:27] Kat Hill: I don’t make decisions or if there’s a lot going on around us, if it’s noisy, if there’s a lot of other conversations going on, I can’t track well, or I get overloaded and my nervous system sort of shuts down.

[00:03:44] Anna: And Dr. Mathur, a family, physician, and person with Parkinson’s experiences, the common word, finding issue.

[00:03:52] Dr. Mathur: Sometimes I can think of a word. I know what I wanna say, but I have trouble saying that word, kind of picking it out for my brain and expressing it.

[00:03:59] Anna: There are also some scenarios that might make conversing harder.

[00:04:03] John Dean : Sometimes having a lot of visual stimuli, if you’re in a busy public environment and there’s a lot of people walking around behind the person you’re talking to that can make it more difficult for you to stay focused.

[00:04:15] Anna: There are some simple tips John suggests that can help if you have Parkinson’s disease or are conversing with someone who does.

[00:04:22] John Dean : Make sure that you’re making eye contact or you have the person’s attention before you’re trying to talk to them. So you’ll be doing something you’ll be typing, you’re working and someone will say something to you and then you won’t hear it. And then they’ll go, John, and then now you’re looking up and it’s like, it’d be much smarter if you would say John and I would look up and then tell me so change the way that you are ordering that communication.

[00:04:45] Anna: Kat has changed the way her and her husband talk to make sure they understand each other.

[00:04:50] Kat Hill: My husband and I are good communicators I would say, my style of communication has had to change. So if I’m trying to make a decision or it’s an important conversation, we have learned that we need to do that when I’m not super symptomatic and when there’s not a lot going on around us.

[00:05:14] Anna: For people with Parkinson’s being able to see someone’s face when they’re talking can also be a big help to aid communication.

[00:05:23] John Dean : If you’re talking to someone and they’re standing in front of a window and you’re looking at them, all that light means that their face becomes darker and harder to see and now you can’t see their lips and all of a sudden you have a communication.

[00:05:35] Anna: There are tools available to make conversations, easier, visiting an audiologist, to have your hearing tested and considering a hearing aid are good steps to try. John also suggests some technology you can buy online.

[00:05:48] John Dean : Over the counter kind of tools that we call like pocket talkers or like a miracle ears cause it’s like a personal listening device and those are fairly inexpensive

[00:05:58] Anna: one kind of personal listening device is a pair of headphones that connect to a small microphone, which amplifies the voice of the person talking if pointed in that direction. So that helps with listening. And then there are devices to aid speaking.

[00:06:13] John Dean : The flip side of that they’re actually make personal amplification devices, which are small battery operated speakers with a microphone. And I often recommend people use those, especially if they’re going to be in a big, loud public enviroment.

[00:06:26] Anna: Dr. Mathur uses the support of people who know her well to help manage conversations in busy environments like weddings or parties.

[00:06:34] Dr. Mathur: Trying to recruit those that love you and know you, I think is also very important if you are in a larger social situation, if you have someone like your partner or friend that knows that you have difficulties in this area, they can perhaps bring you into the conversation a little bit more or prompt people to listen.

[00:06:53] Anna: For specific help with speaking quietly or speaking in just one tone John recommends a voice training program.

[00:07:01] John Dean : That’s where L S V T or there’s other programs out there now, like Speak Out the Parkinson’s voice project.

[00:07:07] Anna: L S V T stands for Lee Silverman voice treatment and is named after Lee Silverman, a woman living with Parkinson’s. It’s a worldwide program that teaches you to recalibrate your voice.

[00:07:20] Wayne: When I was first diagnosed, that was one of my symptoms was I had a weak voice.

[00:07:26] Anna: Wayne, who we heard from in previous episodes completed L S V T at the start of his Parkinson’s journey and shares the techniques that program taught him and can teach others too.

[00:07:38] Wayne: It’s a series of sounds that you make kinda like singing high, medium, and low notes, and you try to get a note and hold it as long as you can. Because another thing that happens to my voice is that I’ve run out wind, I’ll start a sentence and I can’t finish it without taking another breath. I just had to breathe there. It is an effective program. It takes several weeks and the improvement is traumatic at the end of the training my voice sounds like it used to be .

[00:08:12] Anna: Another way to improve your vocal skills is through singing. And there are Parkinson’s specific choirs across the world.

[00:08:19] John Dean : Choirs for Parkinson’s are interesting to me because there’s a social element as well. And I think that’s super valuable.

[00:08:26] Anna: But it doesn’t have to be an organized choir aimed at people with a diagnosis.

[00:08:32] Kat Hill: I sang a lot and did a lot of vocal stuff all through high school and college.

And I think that learning how to do diaphragmatic breathing that real deep breathing has helped me to maintain my vocal ability.

[00:08:46] John Dean : If you have a choir in your community, that’s maybe related to your church or some other civic organization, there’s nothing wrong with doing that. It’s still good use. It’s just maybe not as targeted to your needs.

[00:08:57] Anna: There are even opportunities to improve your voice at home.

[00:09:01] Dr. Mathur: I haven’t participated in any type of voice training formally. I sing a lot in the car and that sort of thing, and in the shower, and I find that helps strengthen my voice.

[00:09:10] John Dean : I’ll tell people who can’t get to acquire or they’re working is that you could do kind of a karaoke approach these days, there’s YouTube and certain apps out there that you could actually pull up any song you like, and it’ll have the lyrics and it’ll have background music and you could practice that way. That’s a really functional, easy way to do it at home.

[00:09:29] Anna: Working one on one with a speech language pathologist, like John would involve multiple clinic sessions as well as daily exercises that would aim to address issues such as word, finding, struggling to hold conversations or quiet voice. Quiet voice is the term used to describe when vocal chords don’t vibrate adequately, and it often makes people with Parkinson’s difficult to hear and understand. Head to healthunmuted.com to find a link that shows the speech and language pathologist near you. You’re listening to the Parkinson’s disease podcast. Part of the health unmuted library, please like subscribe or follow this series on your favorite podcast player to stay aware of all future episode releases.

[00:10:11] PS&D: With PS and D you’ll get tailored support and dedicated recruitment efforts that lead to provider retention and longevity. Your new hires won’t just take the job, they’ll put down roots.

[00:10:23] Anna: So far we’ve talked about some of the speech and communication problems. People with Parkinson’s might face and different ways of adapting to them. Next, let’s talk about swallowing difficulties and ways that speech therapy can help.

[00:10:37] Dr. Mathur: Speech and language pathology can be wonderful, not just in terms of voice, but in terms of swallowing difficulties and issues with choking, when you swallow and aspiration.

[00:10:46] John Dean : Swallowing dysfunction could be anything from having difficulty taking a pill to a drooling, which is pretty common.

[00:10:54] Anna: A swallowing assessment is usually carried out by a speech and language pathologist like John, they’ll ask a series of questions about eating and swallowing, then carry out some tests. They’ll use a video x-ray or an endoscopic exam so that they can observe the swallowing process as the person sips liquid, and eats food. And these substances flow from the mouth down the throat in esophagus and to the stomach.

[00:11:18] John Dean : Parkinson’s may lead to slower movement, may mean that there’s a timing issue when you’re swallowing.

[00:11:24] Dr. Mathur: The foods that I was having trouble with swallowing were primarily textually related. So sticky foods, things like cheese or mashed potatoes I found would get stuck in the back of my throat. And I had to drink water or swallow a few times in order for the food to go down into my stomach.

[00:11:40] Anna: Dr. Mathur completed a swallowing assessment by a speech and language pathologist, but they didn’t find any particular issues so advised her to make some small changes at home.

[00:11:50] Dr. Mathur: Other than the choice of foods, I’ve become much more aware and much more present when I’m eating. I concentrate more, I try not to talk or get too engrossed in conversation, I take smaller spoonfuls of things. I just try not to rush. And I just really make it really conscious effort to concentrate on the swallowing process and I have lots of fluids by my side.

[00:12:13] Anna: Since Parkinson’s is a progressive disease. It’s important to remain aware of any changes to your symptoms over time

[00:12:20] John Dean : The changes that may have happened in your speech or your swallowing may have happened so slowly that you may not be aware of that and you may not recognize it. And so working with a clinician, a speech language pathologist, you’ll get someone with an expert eye.

[00:12:36] Anna: Trouble swallowing affects eating meals and also taking medication.

[00:12:40] John Dean : Pill swallowing dysfunction is a really early problem. If you’re having problems, taking your pills and you can’t get ’em down, or maybe you have a pill, they get stuck in your throat a little bit. You can feel that sensation. That’s an immediate reason to get a swallowing evaluation from a speech language pathologist.

[00:12:57] Anna: In addition to a swallowing evaluation, John also has a tip for making swallowing pills easier. That may surprise you.

[00:13:05] John Dean : Most people take pills with water, and it’s actually a terrible approach because water is going to go wherever it wants. It’s gonna go to the path. At least resistance in the pill is small and it’s hard and it’s kind of dry and chalk. You’re trying to control this bit of water. That goes whoever it wants. And so what I recommend to people is to take the water away and put the pill onto a spoon full of apple sauce, or sometimes I mash up a banana. I try to steer people away from using a puree, like a yogurt or pudding, cuz that has protein. And sometimes the protein can interact with the pills and make it not work as well or not work at all, but you put that pill directly onto the applesauce and then it makes it much easier to swallow because now you have something that has some heft to it, and isn’t gonna go traveling around, that’s one quick solution.

[00:13:54] Anna: There are also different medication styles you can try such as a patch or crushable pill. If you’re struggling to take your medication, speak to your doctor as soon as possible.

If you’d like to find more information on improving. If you’d like to find more information on improving your voice and communication. When living with Parkinson’s head to health, unmuted.com for a full list of resources, including video sessions from Parkinson’s voice project and the LSVT website to find a program near you.

You could find a Parkinson’s community through local and global advocacy groups like PD, Avengers. You can also find a selection of other podcasts that you may find helpful as you continue to learn more about this disease such as You, Me and PD by Jeremy Likness and his wife, Doreen.

Thanks to Dr. La Faver. Dr. Mathur, Dr. Archie, Kimberly Berg and Ashley Campbell for their professional expertise and to Wayne Folkston, Jeff Lasley, Kat Hill and Dr. Mathur for sharing their personal experiences.

The Parkinson’s disease podcast is hosted by me, Anna Stoecklein. This show is a part of the Health Unmuted Audio Library by Mission Based Media, to listen and learn more visit healthunmuted.com and follow our show on your favorite podcast player. And be sure to share this podcast with the people in your life.

In this Parkinson’s disease mini series, we’ve talked to healthcare providers and those living with a condition about a lot of different ways Parkinson’s disease affects a person, but we know there are more topics to cover like mental health and caring for someone with advanced stage Parkinson’s. So we’ll return with further episodes that address these topics and more. Like and follow the show on your favorite podcast player and subscribe to our newsletter to keep up to date when we release new content.

If you have questions or a topic related to Parkinson’s disease, you’d like us to cover get in touch through our website or on social media. This show was produced and hosted by me, Anna Stoecklein with writing and production support by Hannah Turner sound design is Ivan Juric our executive producer is Dan Kendall and Chris Hemmings is our associate editor. This show is a part of the Health Unmuted Audio Library by Mission Based Media to listen and learn more visit healthunmuted.com and follow our show on your favorite podcast player. See you back here soon. And thanks for listening.

 

 

 

 

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