Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s & Speech: Why Your Voice Changes and How to Fight Back

Transcript

Parkinson’s & Speech: Why Your Voice Changes and How to Fight Back · Living with Parkinson’s | Bryce Perry

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  Do you know what Parkinson takes that hardly anybody warns you
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  about your voice. You know, one day you're
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  chatting away and people can hear you just fine, and the next
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  day somebody leans in and says, sorry, can you repeat that?
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  Or Carmen tells me I'm mumbling and I'm thinking mumbling.
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  I thought I was practically shouting.
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  And that's what we're talking about today, Why Parkinson's
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  messes with your voice, the science behind it, what I've
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  personally gone through and the tools that actually help.
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  And we have Carmen's Corner care partner corner again to share
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  what it's like from her side. Now stick with me till the end
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  because I've got a Bryce isn't for you.
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  That you're going to want to shout, not whisper.
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  Welcome to living with Parkinson's, the good, the bad,
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  and the reality. Real talk, real life, real
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  community with Bryce Perry. Let's begin.
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  Well, welcome back to the channel.
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  If you're new here, my name is Bryce and this is living with
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  Parkinson's, the good, the bad and the reality.
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  Now, this channel is all about the real Parkinson's journey,
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  the tough stuff, the funny stuff, and the stuff nobody
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  likes to talk about. Now if that sounds like
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  something you need, then go ahead and subscribe and come
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  along for the ride. OK, so let's dig in.
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  Here's the science behind this. Parkinson's happens because the
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  brain loses dopamine cells. And dopamine isn't just about
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  moving your arms and legs. It's about those tiny muscles in
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  your face, your throat, and your chest and all the stuff you need
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  to speak. Now when those muscles don't get
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  the same signal, your vocal folds don't close as tightly,
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  your breath support weakens and your pitch shrinks.
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  And that's why a lot of us get something called hypothemia, hip
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  hippophonia, which is just a fancy word for your voice
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  getting softer. Now here's the kicker.
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  You don't notice it yourself. Your brain thinks you're talking
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  normally. So when somebody says can you
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  speak up, it feels unfair because you're in your head.
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  You're already speaking up. Add that to slower tongue and
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  lip movement so your words start to blur together and and then
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  your breathing gets shallow so you run out of you run out of
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  air halfway through a sentence. It's not being lazy, it's not
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  being die. It's literally Parkinson's
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  changing the way your body produces speech.
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  Now that's the science. Let me bring this down to real
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  life. Early on, I didn't notice
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  anything. I was giving presentations.
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  I was leading meetings, and my voice was fine.
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  But over time, little things started happening.
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  I'd tell a story in a group and nobody would respond.
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  And I'd think, well, maybe it wasn't funny.
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  And then Carmen would lean over and whisper, They didn't hear
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  you. Hey, I knew I was funny.
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  So it had to be that, right? Restaurants become tricky.
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  I'd order food, and the server would stare at me like, like
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  they were trying to decode a secret message.
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  And then they'd just turn to Carmen and say, what?
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  What, what? What's he having?
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  Let me tell you, nothing makes you feel more invisible than
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  having your wife order your burger for you.
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  And don't even get me started on phone calls.
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  I've told whole stories only to hear the other person go, hello,
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  Are you still there? And I'm like, yes, I'm here.
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  I just gave you the punchline. But to them, it was silence.
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  And that was the moment I realized this wasn't just
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  frustrating, it was shutting me out of connection.
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  So what can we do about it? Well, the very first thing is
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  speech therapy. There's a program called LSVT
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  Loud. It's basically boot camp for
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  your voice. You, you, you practice speaking
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  louder than feels normal, stretching your words,
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  exaggerating everything. At first, I'll be honest with
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  you, at first it, Oh my gosh, at first it just feels
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  embarrassing. It's weird, it's strange.
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  You feel silly. It's like you're auditioning for
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  a cartoon. But guess what?
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  It works. It retains.
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  It retrains your brain to hear your volume correctly.
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  It's huge. Second daily practice.
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  Now this one's on us. Read out loud, sing in the car,
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  scare the neighbors with your best Elvis impersonation.
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  I've done that. It's not great, but I've done
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  it. And here's where tech helps.
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  The voice analyst app is what it's is one I've used.
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  It shows you how loud you're speaking in real time.
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  There's even a free version. Another one is Decibel X.
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  It's basically a sound meter for your phone.
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  It's like having a little coach in your pocket.
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  And those things can help you everyday.
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  Here's the third thing you can do, breathing and posture.
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  Sit up, sit up straight, take deep breaths and think of a
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  filling of balloon from the bottom up.
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  Carmen always uses this one. She always says to me, use your
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  diaphragm instead of your throat.
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  And she's right. The sound is instantly stronger.
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  And 4th resources. If you want some structured
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  support, check out LSVT Global or the Parkinson Voice Project.
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  Both of them offer programs designed specifically for people
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  like us. I'll put the links in the
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  description so you can explore them for yourself.
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  Because I'm telling you, you need to get on this.
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  OK, Now it's time. You know what?
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  We introduced this last episode, asked you how you liked it, and
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  resoundedly, everybody was saying they loved it.
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  So it's now time for Carmen's part.
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  Carmen's. Carmen's care.
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  Parker Corner. OK, so this is what she'd say.
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  And what she said, what she told me to say.
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  When Bryce's voice drops, it's not just tough on him, it's
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  tough on me too, because I want to hear him and I don't want to
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  miss what he's saying. Yes, I get frustrated when I
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  have to ask him to repeat himself three times.
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  Great. But I've learned to use cues
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  instead. Instead of just saying what over
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  and over, I'll say, use your diaphragm, not your throat.
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  He knows exactly what I mean and I can hear the difference
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  immediately. So my tip for other care
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  partners is this find a gentle cue that you both understand.
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  It saves frustration and it keeps the conversation going.
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  Well, there you go see that's why I love Carmen's care partner
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  corner. She's always about the practical
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  tips and to be honest, she's. She's always right.
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  Usually right now, she's always right.
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  A lot of times, right, I'm right once in awhile.
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  Anyway, here's the bottom line. Parkinson's might make your
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  voice softer, but it doesn't have to silence you.
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  Keep practicing using the tools and lean on your partner and
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  anybody around you. And most importantly, keep
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  speaking up because your story deserves to be heard.
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  And if you're watching right now, let's get the chat rolling.
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  How many of you been asked to repeat yourself this week?
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  Drop a yes in the comments if you've had one, and let's see
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  how many times you've done it. And let's see how common this
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  is. OK, you made it to the bright
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  system and here it is. With Parkinson's, your voice may
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  fade, but you're just you're. Oh man, let's try that again.
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  With Parkinson's, your voice may fade, but your story deserves to
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  be shouted from the rooftops and it really does.
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  You deserve it. And I need you to work on this.
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  And if you're sitting here saying, I hope my voice doesn't
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  get that bad, start now. Don't wait till it's down the
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  road. Don't wait till it starts
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  getting soft. Do it now.
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  I'm telling you, you'll be you'll thank me for this.
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  And thanks for hanging out for me with me today.
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  And I want you to share your own experience in the comments.
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  I really do read every single one and reply to them.
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  If you want more support, more tools and real connection, check
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  out the inner circle community, the links in the description.
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  And I've got a big thing coming up.
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  I've got a newly diagnosed program coming.
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  If that's something you're interested in, interested in,
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  let me know in the comments. I'll be promoting it soon and I
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  want to get you in right off the bat.
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  I love you guys. Thanks for tuning in.
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  Until next time, keep showing up, keep being real, and you
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  keep doing life today. Parkinson's may be part of your
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  life, but it doesn't get to define it.
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  Thanks for listening to Living with Parkinson's, the good, the
• 8:41
  bad, and the reality. If this episode moved you,
• 8:45
  helped you, or reminded you you're not alone, share it with
• 8:48
  someone who needs to hear it. Want to go deeper?
• 8:51
  The Inner Circle is waiting. Monthly Zoom calls. 24/7
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  community and a Direct Line to Bryce.
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  You'll find the link in the show notes.
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  Until next time, keep showing up and keep doing life today.