Latest / Living with Parkinson’s | Bryce Perry / Yes, I Have Parkinson’s. No, I’m Not Done Yet!

Transcript

Yes, I Have Parkinson’s. No, I’m Not Done Yet! · 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,
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  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. Yes, I am Parkinson's, and no,
• 0:34
  I'm not done yet. And if you've ever felt like
• 0:37
  this thing is shrinking your world, like your life is being
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  written smaller and smaller and smaller print, I want you to
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  hear this. Parkinson's doesn't get to write
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  your ending. You do.
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  So let's talk about how we keep moving forward even when
• 0:51
  everything in our body is telling us to stop.
• 1:03
  Well, welcome back, my friends, and to anyone new here, I'm
• 1:07
  really glad that you found this space.
• 1:09
  I'm Bryce and this is Life in Motion, the Parkinson podcast,
• 1:12
  and we're about real what's going on here.
• 1:28
  Well, welcome back and to anyone new here, I'm really glad you
• 1:32
  found this space. I'm Bryce and this is Life in
• 1:34
  Motion, the Parkinson podcast, and we're about real talk, real
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  hope, and real community for people living with Parkinson's
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  and those that love them. And hey, if you've been looking
• 1:42
  for something maybe a bit deeper than just watching these videos,
• 1:45
  listen to the podcast, then check out my Inner Circle.
• 1:47
  It's my private group. We do monthly live Zoom calls
• 1:50
  that honestly feel like my own support group.
• 1:52
  No pressure, no judgement, just a bunch of us doing life
• 1:55
  together. The next one's coming up soon
• 1:57
  and I'd love to see you there. You can find the link in the
• 2:01
  description below or you can if you're on YouTube, you can click
• 2:04
  the join button. I'd love you to come join me.
• 2:06
  It's pretty awesome. So we get to get to do life a
• 2:09
  little bit deeper, a little bit more intimate.
• 2:11
  And again, it's just us, life one-on-one.
• 2:13
  Let's hang out. All right, come join me and also
• 2:17
  let me just .1 thing out and, and thank you for those that
• 2:19
  have given some super thank you's or super likes or things
• 2:22
  like that and that they've joined the inner circle and
• 2:25
  maybe even the the on and off crew.
• 2:27
  And again, you can get more information about that in the
• 2:28
  description. I just want to be real clear
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  about something. All of the money that that is
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  raised or you know, if to sign up for pay for anything or the
• 2:36
  swag or whatever happens all goes to Parkinson's awareness
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  and to get the word out and to to raise some awareness for this
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  thing. So not only do you get to hang
• 2:46
  out with me, you get to support a good cause.
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  So anyway, let's get into this talk because, yeah, you know,
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  it's like, why am I still standing?
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  You know what I mean? Why am I still standing?
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  I said, look, when I was 40 and I got diagnosed, and that was in
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  2010, I didn't tell anyone except my wife, my close friends
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  for five years. Not because I was in denial, OK,
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  maybe, maybe a little bit in denial, but mostly because I
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  didn't want people to look at me differently.
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  I didn't want those pity eyes. You know what those are, don't
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  you? I didn't want people to start
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  treating me like I was fragile. And truthfully, I didn't want to
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  admit that I was scared. You know, that took me a long
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  time to realize that I was freaked out.
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  I was really, really scared. And, you know, I was raised to
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  be a tough guy, right? Be, you know, hold it in.
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  And so I was, I was frightened. And see, the thing about
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  Parkinson's is sometimes you look fine, right?
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  And people don't understand what they can't see.
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  I get stiffness. And that's my main symptom.
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  I don't shake much. I don't well, I freeze the here
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  and now and again. It's getting more and more as
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  time goes on, but when people find out that I have
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  Parkinson's, they say things like, but you look so good and
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  I'm like, I know, just kidding. Or my personal favorite, Are you
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  sure it's Parkinson's? Like I accidentally stiffened my
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  whole body for 14 years now just for fun.
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  It's meant to be a compliment. I get it.
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  But it used to drive me crazy because I was struggling quietly
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  constantly and I felt like nobody could see it.
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  Matter of fact, it got so interestingly bad that I was
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  actually moderating, you know, Parkinson events, right?
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  So I would have a movement disorder specialist and, you
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  know, speech therapist and physical therapist all around.
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  And I was, I was having like a fire, fire, what do you call it?
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  A fire chat, fire fireside chats and moderating in a panel of, of
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  these of these for Parkinson's awareness, you know, for people
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  with Parkinson's really and their caregivers and you know,
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  healthcare workers and whatnot. And, you know, I'd get up, I'd
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  tell, I'd, I'd host, I'd host. So I'd kind of share my story a
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  little bit and then I would get up and do these panels and on
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  the panels I'd be talking to a movement disorder specialist and
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  I would say something like, all right, let's talk about, you
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  know, the tricks that you guys do.
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  Like why do you come out and meet us in the, in the, in the
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  waiting room? You know, I was, I always make a
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  joke to my movement disorder specialist says that that first
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  appointment I came, I mean, I got like the concierge service.
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  It was like I'd never had a doctor kind of walk right out
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  into the waiting room, you know? Oh, hi, your name is Bryce.
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  Come on, let's let's have a walk down to my office.
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  I'm like, what kind of place is this?
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  It's kind of crazy, right? You know, But now I know.
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  Now what I didn't know then was that he was studying me the
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  entire way. He was watching to see, oh,
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  guess what? His right arm doesn't swing when
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  he walks. Didn't even realize that.
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  Oh, look at his little shuffle on his feet and look where his
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  balance is. So, you know, things like that
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  are things that that I could see that my room is movement
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  disorder specialist could see. And I'd be sitting in these
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  events and I'd have this movement disorder specialist.
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  I'd make a joke like that, but you know about that.
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  And so we're going through this whole thing.
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  And after about an hour, I'd come off the stage and I had
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  people walk up to me in the, you know, in the hallway and go
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  like, wow, that's really good. How do you have such a good
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  grasp on people with Parkinson's?
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  Like, do you have somebody in your family that has it?
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  And I'm like, pardon me? What?
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  What? My grandma had it.
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  Yeah, yeah. But how do you know so much like
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  about like the medication and what you're doing?
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  Like, I'm like, that was me. I think that was my story.
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  And they're like, oh, I would never have known.
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  Oh, my God, I'm so sorry. I didn't mean to offend you.
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  And I'm like, what's going on here?
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  Like what's going on Anyway, So that always used to kind of
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  drive me a little bit bonkers, right.
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  And because again, again, I was struggling.
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  I was struggling quietly and constantly inside.
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  And. And the more people do that, the
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  more you feel like you're not seen.
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  And that's tough. That's a tough place to be at,
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  right? This, this feeling not seen.
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  So there were moments early on, like quiet ones when no one was
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  around, where I grieved my life that I thought I was building.
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  I had a career I loved. I travelled a lot for work.
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  But overtime, those symptoms, the exhaustion, it made travel
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  impossible. Or at least the, the way I was
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  travelling and the travel I had to do for that job.
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  So I had to step away from the job in 2020 and I completely
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  felt like a failure to me. I never left, you know, like a
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  job like that. Like I always, if I, if I had
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  moved on from this particular role or company or job I was in,
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  it was because I was doing something better or bigger,
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  right? This was just like having to
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  stop and it really felt like failure.
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  And I, it was like I was letting people down.
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  It was felt like Parkinson's was finally winning.
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  It was 10 years in now, right? 10 years.
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  And it took me 5 to get kind of used to where I was at.
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  And then five years later, I'm feeling OK.
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  It's beating me, it's beating me.
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  But what I didn't know at the time was that leaving that job
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  was the beginning of something else, something incredible.
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  So I Fast forward a little bit here today.
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  I'm working with Parkinson Canada.
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  I moderate these events. I speak out loud about the
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  things that I used to hide. I get messages everyday from
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  people who feel seen by something I said.
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  And it reminds me that I'm still doing meaningful work and I'm
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  still making a difference, just in a completely different way
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  than I had ever imagined. So no, I'm not done.
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  And if you're watching this right now, neither are you.
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  Neither are you. There are still days when I
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  struggle. Don't get me wrong.
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  I pause them. I Mr. pause them.
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  I love it, but I still struggle some days, right?
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  I take the medication every three hours, 7 to 8 times a day.
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  And I I don't plan meals around it, but I know I'm eating heavy
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  protein meal. I take an extra dose.
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  I carry the bill pill bottle cap with the timer now because
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  otherwise I'll forget when I took it right?
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  That's crazy. I don't even know when I took it
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  or when and that was a life changer.
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  There's a link in the description below and I'm
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  telling you, if you forget your medication, I got to remember
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  who put this in the comments. They somebody in the comments.
• 8:45
  Oh my gosh, I owe you a lot because this thing is insanely
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  cool. I just picked it up and it's
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  like, like there's a little timer on it and it tells me when
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  I took my pills last, like the last time I opened the bottle
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  and you can see that there like that, I guess what's that say 36
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  minutes ago I took that. I opened this bottle 36 minutes
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  ago. So even if I forget that I took
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  them, I can look at this and go, yeah, I did.
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  I took them like 2 1/2 hours ago.
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  Woo Hoo, right on. So now I carry that everywhere I
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  go. It's crazy.
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  It's a life changer. It's fantastic.
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  Links in the description, get one.
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  I'm telling you, it'll change your life.
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  And you know what? There's days that I feel stiff
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  and stuck and I don't want to move, and days when I see a
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  photo of myself and I realize, I told you the last one, that my
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  face isn't moving like it used to.
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  That facial masking is subtle, but it's there.
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  And it messes with my head more than I expected.
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  But I still show up. I still film these things.
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  I still speak, I still create. Because doing something is
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  better than nothing. And forward is forward.
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  I've always thought that forward is forward, right?
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  I don't know what Parkinson's looks like for you.
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  Maybe you shake, maybe you freeze.
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  Maybe it's pain, maybe it's fatigue.
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  Maybe it's all of the above. I I don't know.
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  But I do know this. You're still here, you're still
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  breathing, and that means there's still something left in
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  your tank. You don't have to be productive.
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  You don't have to prove your worth to anybody, but you do get
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  to keep living with purpose, with joy, and with grit.
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  Even if your hand is shaking while you're doing it.
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  It doesn't matter. You show up and you do it.
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  So no matter where you are in your journey, whether you're
• 10:23
  just diagnosed or whether you've been like me 15 years or five
• 10:27
  years or 10 years, or maybe you're 90 years old, maybe
• 10:30
  you're 85, maybe you're 30, right?
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  We're all different. We're all there.
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  But the one thing that we can all do together is we can stand
• 10:37
  up and do this thing and know this, that this community around
• 10:40
  here is doing it. Look in the comments, promise.
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  Look in the comments, look in the comments.
• 10:45
  They're doing it. They really are.
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  And I want you to join that, join in.
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  And maybe you're a silent watcher.
• 10:50
  Maybe you're watching or listening to all these podcasts
• 10:52
  and you're not putting something in the comments, you're not
• 10:54
  getting involved, you're not joining the inner circle and
• 10:58
  stuff like that. Maybe today is the day.
• 11:01
  Maybe today's the day to say, you know what, I'm going to draw
• 11:03
  a line in the sand. I don't feel like it, right?
• 11:05
  I don't feel like I don't want to do it.
• 11:06
  I I feel down. I feel depressed.
• 11:09
  Well, you know what? What do they always say?
• 11:12
  If you keep doing the same things, what is this?
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  What is how something go? If you do the same things that
• 11:17
  you always have always done and expect something different,
• 11:20
  that's the definition of Saturday.
• 11:21
  You just keep doing the same things, expecting something to
• 11:24
  change and it never changes, right?
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  And you'll just be stuck in a rut and, and there's nothing
• 11:29
  wrong with that. There's no, there's no shame in
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  that because we've all been stuck in a rut before.
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  And we sometimes we'll get into another rut.
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  And that's why community is so important.
• 11:37
  That's why we're here. That's why I do this, to throw
• 11:40
  you a lifeline to throw my hand. How can I help?
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  Because I know what it feels like.
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  So yeah. Yeah.
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  Guess what? I have Parkinson's.
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  And no, guess what? I'm not done yet.
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  Why do you say that I have Parkinson's but I'm not done
• 11:52
  yet. Maybe shout it from the
• 11:53
  rooftops. I have Parkinson's and I'm not
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  done yet. I'm not.
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  I'm not done. Right on.
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  It's exciting. I'm not done.
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  Not done. Oh, I love it.
• 12:04
  And if you needed someone, if you needed someone to say that
• 12:06
  out loud today, then let this be it.
• 12:09
  You're not done. You still matter.
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  You still have something that only you can offer, and we need
• 12:15
  that and we need you. We really do.
• 12:19
  And if this episode gave you something to hold on to, let me
• 12:22
  know. Drop me a line in the comments.
• 12:24
  Let me know. Tell me what keeps you going.
• 12:28
  And hey, don't forget to check out that inner circle.
• 12:31
  I'm telling you the monthly Zoom call.
• 12:32
  It's come one of my favorite parts of the month.
• 12:34
  We talk, we laugh, we share, and you know what?
• 12:37
  We share what's really going on, really going on, and we do it
• 12:40
  all together. The next one's coming up soon.
• 12:43
  I'd love to see you there. Subscribe if you haven't join
• 12:46
  the community. Like the video.
• 12:47
  If you hit, if it hit home with you, please like it and share
• 12:50
  with someone who needs to hear this today.
• 12:52
  You're not done yet. See you next time.
• 13:04
  Parkinson's may be part of your life, but it doesn't get to
• 13:07
  define it. Thanks for listening to Living
• 13:09
  with Parkinson's, The Good, the Bad, and the Reality.
• 13:14
  If this episode moved you, helped you, or reminded you
• 13:17
  you're not alone, share it with someone who needs to hear it.
• 13:21
  Want to go deeper? The Inner Circle is waiting.
• 13:23
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 13:27
  Bryce. You'll find the link in the show
• 13:29
  notes. Until next time, keep showing up
• 13:33
  and keep doing life today.