Latest / Living with Parkinson’s | Bryce Perry / When the Mirror Doesn’t Match the Mind

Transcript

When the Mirror Doesn’t Match the Mind · Living with Parkinson’s | Bryce Perry

• 0:01
  They told him he had five good years left.
• 0:04
  That was 15 years ago. He's still standing, still
• 0:08
  speaking, still living. This is living with Parkinson's,
• 0:12
  The good, the bad, and the reality.
• 0:15
  A podcast about what happens when life throws you something
• 0:18
  incurable and you fight back anyway.
• 0:21
  Hosted by Bryce Perry, diagnosed at 4015.
• 0:25
  Years into the battle, This is the truth behind the tremor.
• 0:29
  Let's begin. My brain thinks I'm 35, strong,
• 0:35
  sharp and in control. But the reflection, my
• 0:39
  reflection is slower, tighter, and it's not quite me.
• 0:43
  With Parkinson's, there's this weird moment when you catch a
• 0:46
  glimpse of yourself in the mirror and it feels like you're
• 0:49
  looking at somebody else. Well, today we're going to talk
• 0:52
  about something that happens when the mirror doesn't match
• 0:55
  the my. Well, welcome back to the
• 1:06
  channel. I want to thank my loyal viewers
• 1:07
  for coming back. You're amazing and I love you.
• 1:10
  And if you're new here, I'm Bryce.
• 1:12
  And this is living with Parkinson's, the good, the bad
• 1:14
  and the reality. So this channel is all about
• 1:17
  providing strength and hope and support to individuals living
• 1:19
  with Parkinson's disease and their caregivers.
• 1:23
  So I share motivational tips and stories and tricks and insights
• 1:25
  to help you navigate your life with Parkinson's.
• 1:28
  I've been on this journey for 15 years now.
• 1:30
  I've diagnosed 15, almost 15 years ago.
• 1:32
  So no matter where you are in your journey, whether you're
• 1:35
  newly diagnosed or if you're been here as long as I have or
• 1:38
  longer or shorter, if you're looking for that this type of
• 1:40
  contact and make sure you subscribe and, and join us.
• 1:43
  We're building a community here as well.
• 1:45
  Speaking of that, there's this new thing on YouTube and at the
• 1:47
  top it says they'll say something.
• 1:49
  I think it says memberships or something like that.
• 1:51
  Well, if you want to join me, I'm going to do a monthly Zoom
• 1:55
  meeting, just a Zoom meeting just with, you know, like an
• 1:59
  inner circle. It's kind of like a we're going
• 2:01
  to chat, we're going to talk, we're going to go through Q&A.
• 2:03
  It's just a time for me to spend with you for a couple of hours,
• 2:06
  if you want, once a month. And we're just going to kind of
• 2:09
  like dig deep and, and, you know, get to know each other
• 2:11
  and, and hopefully I can help you with some things a little
• 2:13
  bit more personal, if that makes sense.
• 2:15
  OK Well, today's program. OK.
• 2:17
  It's when the mirror doesn't match the mind.
• 2:20
  OK, You know those days, like there's days that I feel totally
• 2:24
  normal. I wake up, I feel sharp, I feel
• 2:26
  motivated, I feel ready to go. And then I pass by the mirror or
• 2:30
  I catch a like a video of myself and I freeze.
• 2:33
  I'm like, who's that? That can't be me.
• 2:37
  I don't walk like that. I don't carry myself like that.
• 2:41
  I don't look like that, do I? I do, and that's one of the
• 2:48
  hardest parts of living with Parkinson's.
• 2:50
  Your mind holds on to the you that you once were while your
• 2:54
  body keeps writing this new version.
• 2:56
  It's disorienting, it's disorienting, it's emotional,
• 3:01
  and honestly, it's very exhausting.
• 3:03
  You know, there's this one time that I was watching a recording
• 3:06
  of like this speech, this talk I gave years ago, OK, and years
• 3:10
  ago, I'm talking probably like 5 or 6-7 years ago.
• 3:13
  And I noticed like the stiffness of the tight shoulders and I
• 3:16
  noticed the slow movements and like what I remember thinking,
• 3:22
  well, that's not how I remember it.
• 3:26
  And it wasn't because my memory was still is still holding on to
• 3:30
  this Bryce from years ago. And let's be real, the younger,
• 3:34
  faster, more confident version of ourselves, well, we kind of
• 3:37
  like that guy or that girl, don't we?
• 3:40
  The Parkinson's forces you to evolve even when you don't want
• 3:43
  to, even when your mind is dragging its feet saying like,
• 3:47
  wait, I'm not ready to go old. I'm not.
• 3:49
  I'm not ready to let go of the old me.
• 3:51
  I'm not. And that's what I want to talk
• 3:54
  about. Just.
• 3:57
  Stay with us. We'll be right back.
• 4:41
  For one second, like that thing, you know you don't look sick.
• 4:45
  I hear that all the time and I listen and listen.
• 4:48
  It means it's, man, wow. Wow.
• 4:52
  It's meant as a compliment, right?
• 4:53
  Like people are trying to compliment me, but man, it
• 4:56
  doesn't feel like 1. Because the truth is, I'm sick.
• 5:00
  I guess I'm sick, right? I'm just really good at hiding
• 5:04
  it sometimes. And there's something incredibly
• 5:06
  lonely about having this invisible disease.
• 5:10
  Like, do I have to look worse for people to believe me?
• 5:14
  Think about that. On the flip side, I know people
• 5:17
  with visible tremors, facial masking, you know, that unsteady
• 5:20
  gait. And for them, going out of
• 5:22
  public is a whole different kind of battle.
• 5:24
  People stare, people make assumptions, people judge, and
• 5:29
  honestly, neither experience is easier.
• 5:33
  That's why Parkinson's is so tricky.
• 5:35
  Some of us wish we looked more like we like we have it so that
• 5:39
  people understand, and others wish like we looked less like we
• 5:42
  have it so people would stop staring.
• 5:45
  Like, wow, you just, you can't win.
• 5:48
  But it's deeper than that. Let's go deeper.
• 5:50
  Let's go deeper. This isn't just about how others
• 5:53
  see us. It's about how we see ourselves.
• 5:56
  And that's where it hits the hardest.
• 5:58
  There's this identity shift that happens with Parkinson's, this
• 6:02
  quiet grief. And the grief is not for a
• 6:06
  person that you loved, but for the person that you used to be.
• 6:10
  Your confidence takes a hit yourself.
• 6:12
  Image changes and some days you look in the mirror and you feel
• 6:15
  like a stranger staring back. But here's what I've learned.
• 6:20
  That version of me from before. He's still here.
• 6:24
  He's just evolving. He's not broken, he's becoming.
• 6:29
  I'm like Bryce 2 point O right? Fewer dance moves, but more
• 6:34
  wisdom. And you know what?
• 6:35
  I'll take that trade. I wasn't like much of the
• 6:37
  dancing anyway. So how do you start to rebuild
• 6:41
  yourself Image. OK, well, let me give you
• 6:43
  something practical. Let me give you something
• 6:46
  practical. Start with a Parkinson's win
• 6:50
  list. What?
• 6:51
  A Parkinson's win list? Write down one thing every day
• 6:55
  that you did well, you know, even if it's just like I got out
• 6:58
  of bed, right? I took my meds on time, I
• 7:02
  laughed, I talked to somebody. I didn't give up speaking about
• 7:07
  taking meds on time. My God, big shout out to and I
• 7:10
  can't hear. I don't have it in my but in the
• 7:11
  one of the comments in the last video we're talking about when
• 7:14
  do we take our meds and if we forget that we take our meds and
• 7:16
  how do we you know, I take my meds and 10 minutes later I
• 7:18
  can't remember if I did or and my wife will text me like when
• 7:21
  did you take your meds? I'm like, Oh my God, I think it
• 7:22
  was like whatever time and she found and I put a link and I'll
• 7:26
  put a link in the description as well.
• 7:29
  For timed caps. You just put them on your on
• 7:32
  your pills and when you open your cap and you take your pills
• 7:35
  out and you close the cap, it starts a timer.
• 7:38
  It'll tell you how long ago that pill bottle was open.
• 7:40
  What an, I mean, that's going to be a game chair.
• 7:42
  It's going to it's going to be a game changer anyway, so I'll put
• 7:45
  that link in the description. I found someone on Amazon.
• 7:47
  I just, I'll throw it in there. You can find them.
• 7:49
  There's a bunch of different ones, but I'll show you the ones
• 7:51
  I got and I'm hoping they're going to work.
• 7:52
  I think it's going to I think it's really cool.
• 7:53
  I'm I'm I'm excited for it. So anyway, took your meds on
• 7:56
  time. I'm hoping to kind of clear that
• 7:58
  one up a little bit more anyway. But anyway, these small wins,
• 8:01
  OK, let me just say it again. You took your meds on time.
• 8:03
  You got out of bed, you laughed, right?
• 8:05
  You, you talked to somebody, you did, you didn't give up.
• 8:07
  You ever go to bed? It's like, hey, I didn't give
• 8:09
  up. Those small wins, they help
• 8:11
  remind you of who you are, right?
• 8:13
  They're going to help reshape how you see yourself and not
• 8:16
  through a lens of loss, but through a lens of growth.
• 8:21
  You're more than your reflection.
• 8:23
  You're more than your symptoms. You are still you, even if the
• 8:27
  packaging has changed a little. And to be honest, I actually
• 8:32
  think you're doing better than you think.
• 8:36
  Before we close, I want to ask you this.
• 8:37
  Have you ever felt like the mirror doesn't match the mind?
• 8:41
  And how do you deal with that? What helps you stay connected to
• 8:45
  who you are? And again, for me, it's those
• 8:48
  small wins. It's writing them down.
• 8:50
  It's reminding myself. And then I have to remind
• 8:54
  myself. And you have to remind yourself
• 8:55
  too that you are your biggest critic.
• 8:58
  You are the one that is always the one seeing things that
• 9:01
  probably some people just don't see.
• 9:02
  But then we drop those thoughts in the comments.
• 9:04
  I want to hear from you. And you know, if this episode
• 9:07
  meant something to you, then please like, subscribe and share
• 9:11
  with someone else who might, who you think might need this today.
• 9:14
  And you know what a great big thanks for you being here.
• 9:17
  Thanks for showing up. And remember, just because you
• 9:20
  look different doesn't mean you're not still powerful.
• 9:23
  And I'll see you in the next episode.
• 9:31
  Parkinson's may be part of your life, but it doesn't get to
• 9:34
  define it. Thanks for listening to Living
• 9:36
  with Parkinson's, the good, the bad, and the reality.