Latest / Living with Parkinson’s | Bryce Perry / Finding Empowerment in the Awkward Moments of Parkinson’s

Transcript

Finding Empowerment in the Awkward Moments of Parkinson’s · 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. Let's talk about awkward,
• 0:33
  because if you're living with Parkinson's, you know that it
• 0:36
  comes with a few uninfited surprises, random arm swings,
• 0:40
  rogue shuffles, or suddenly sounding like you forgot how to
• 0:43
  blink in public. Yeah, awkward.
• 0:46
  But here's what I've learned. Awkward doesn't have to equal
• 0:49
  embarrassing. You don't have to shrink, you
• 0:51
  don't have to hide, and you don't have to apologize.
• 0:53
  In fact, sometimes you can even flip those moments and take the
• 0:56
  power back. So today I'm going to share how
• 0:58
  I hacked those awkward moments with Parkinson's, the stuff that
• 1:01
  makes people look sideways, and how I deal with it without
• 1:04
  losing my dignity, my confidence, or my humor.
• 1:16
  Well, welcome back, my friends. And if it's your first time
• 1:19
  here, I am so glad you found this space.
• 1:22
  I'm Bryce and this is life. This is, you know, isn't
• 1:27
  something. Talk about awkward moments when
• 1:29
  you forget the name of your podcast.
• 1:32
  How about that is an awkward moment.
• 1:33
  Now, I could edit this, right? I could cut this out and I could
• 1:36
  just make it disappear and never have to worry about it again.
• 1:39
  Or I could leave it in to show you that that's pretty darn
• 1:44
  awkward and I'm going to deal with it.
• 1:47
  In fact, I have two podcasts. So I have life in motion, right?
• 1:50
  The Parkinson podcast, I do that with my buddy Brian.
• 1:52
  We do that on Sundays here on YouTube and across.
• 1:55
  It'll be coming out on audio pretty soon.
• 1:57
  But this podcast, this one today is, is what is it called Living
• 2:02
  with Parkinson's? The good, the bad, and the
• 2:04
  reality. Not bad, right?
• 2:07
  Awkward, not bad. Who cares anyway?
• 2:10
  Here we talk about real life with Parkinson's, the good days,
• 2:13
  the messy moments, and the stuff that no one else is saying out
• 2:15
  loud. It's about strength, community,
• 2:17
  and figuring out how to keep showing up one day at a time.
• 2:20
  And hey, if you're enjoying this kind of honest, unfiltered
• 2:23
  conversation, consider subscribing to the channel.
• 2:25
  There's no pressure, there's no expectation.
• 2:27
  Just hit that little button if you want more of this in your
• 2:30
  life. And if you're ready to take this
• 2:33
  a little bit further, a little bit deeper.
• 2:36
  I also have a thing called the inner circle.
• 2:38
  It's a private membership group where we hang out once a month
• 2:40
  on the Zoom. Just laugh, we vent, we share,
• 2:43
  we cry. Sometimes we sometimes we laugh,
• 2:45
  sometimes we cry, but sometimes we do it all really.
• 2:47
  We talk about what's really going on in each of our lives.
• 2:50
  And it's it's quickly becoming one of my favorite hours or two
• 2:53
  of the month. Anyway, you're welcome there
• 2:55
  anytime, but again, only if and when you're ready.
• 2:58
  And if you're interested in something like that, you can
• 3:01
  click on the link in the description below to get you
• 3:03
  more information. Or if you're on YouTube, watch
• 3:05
  this on YouTube, you can click the join button right underneath
• 3:07
  this video. All right, let's talk about
• 3:10
  awkward. So awkward used to terrify me.
• 3:15
  Like truly, I'd avoid certain situations just because I didn't
• 3:18
  want to deal with the what ifs. What if my arms start shaking
• 3:23
  mid conversation? What if I freeze in the middle
• 3:25
  of a hallway? What if someone sees me?
• 3:28
  But here's what I learned. Awkward moments are only as
• 3:31
  powerful as the story we attach them to.
• 3:34
  If we treat them like proof that we're failing, then yeah,
• 3:37
  they're going to hurt. But if we treat them like we
• 3:40
  just if they're just part of this deal, they lose their
• 3:43
  sting. All right, let me tell you this
• 3:46
  one. This is an actual story here I'm
• 3:48
  going to tell you. So I was sitting in a coffee
• 3:49
  shop and I was talking to somebody about life and mid
• 3:52
  sentence my arm decides to go freestyle.
• 3:54
  Ever been there ever been there? It just flies out for no reason.
• 3:57
  Do you ever do that? A jazz hand in the middle of a
• 4:00
  small talk. Now the old me would have
• 4:02
  panicked, right? Tried to hide it, apologize.
• 4:06
  I'm from Canada right? So sorry, sorry, sorry and maybe
• 4:09
  even cut the conversation short. But instead I smiled and I said
• 4:13
  sorry. Apparently my hand's trying to
• 4:15
  order its own drink. We both laughed, and the tension
• 4:18
  kind of dissolved. And guess what?
• 4:21
  The world kept turning. The world kept turning.
• 4:24
  So here's my first hack. Use humor to reset the moment.
• 4:28
  If it doesn't have to be a perfect sorry, it doesn't have
• 4:31
  to be a perfect joke. Just something like to
• 4:33
  acknowledge the moment and then move on, right?
• 4:37
  Like you might be sitting here going, well, I'm not funny.
• 4:39
  I can't just make a joke. It doesn't have to be funny,
• 4:42
  right? It just has to be something
• 4:44
  acknowledge it like it's no big oops, sorry, acknowledge it like
• 4:47
  it's no big deal to you and it won't be a big deal overall.
• 4:51
  OK, and that's crazy, right? And, and again, I have this just
• 4:56
  file outs, like I'll just be sitting here.
• 4:58
  We're having a normal conversation in my hand.
• 5:00
  Just wants to do it just takes off.
• 5:02
  So anyway, been there, done that.
• 5:04
  Let me know in the comments what's 1 maybe crazy thing that
• 5:07
  you were even embarrassed about or something that happened that
• 5:11
  you might have been embarrassed about, and how did you deal with
• 5:13
  it? I'd love to hear about it.
• 5:14
  Let's get that conversation started, OK?
• 5:16
  Because I'm telling you it's going to help people.
• 5:19
  All right, all right, let me tell you another story.
• 5:24
  I call this one like the dinner disaster.
• 5:26
  OK, so let's talk about meals. So a couple years ago, I was at
• 5:29
  this fundraising dinner, and I tried to cut into a piece of
• 5:32
  roast beef, and suddenly it turned into like a wrestling
• 5:35
  match. The plate moved, the fork flew,
• 5:38
  and I'm pretty sure gravy ended up somewhere where gravy should
• 5:40
  never be. I could have been embarrassed,
• 5:43
  but instead I just said clearly I've underestimated the cow's
• 5:47
  final act. Oh that sounds awful, right?
• 5:51
  Saying that back, it's crazy. Saying that back, it sounds like
• 5:54
  just like I, I booed myself. Like Oh my gosh.
• 5:57
  And my daughter, my daughter who is 21/22/22 now, she probably
• 6:03
  would have said that. That was a really bad dad joke.
• 6:06
  Anyway, jokes on her, she had her wisdom teeth out this
• 6:09
  weekend so I have her on video afterwards.
• 6:13
  It was hilarious. I might even show that in the
• 6:15
  inner in the the members one of these member posts just to see
• 6:19
  it because it was hilarious. But anyway, again, laughter
• 6:22
  again and the moment passed. So that's hack #2 here's OK, so
• 6:27
  that's just goes hand in hand. But hack number 2 is this think
• 6:30
  ahead, adapt your environment. OK, so now I cut up food just
• 6:36
  before I sit down or I order something easier, right.
• 6:40
  So in other words, if you know, if I have roast beef coming, I
• 6:42
  kind of would like stand there and I'll kind of kind of get it
• 6:45
  all set up. I don't take like I don't cut a
• 6:47
  piece and have a little piece and then have a carrot and then
• 6:50
  have whatever. I literally just cut the entire
• 6:53
  thing up and it's just easier. And I feel like the it's I'm
• 6:56
  paying more attention to that moment as well.
• 6:58
  And I'm kind of go slow and I gotta go my own pace and I just
• 7:01
  kind of do it. So I, I cut it all up before
• 7:04
  right over to eat it. Or I get, I don't order roast
• 7:07
  beef sometimes, especially if I'm wearing a suit.
• 7:09
  And, and it's something I really want to pay attention to because
• 7:11
  I have to pay attention when I'm eating right.
• 7:14
  And someone in the back said Amen anyway, anyway.
• 7:19
  But I, it's not because I'm ashamed.
• 7:20
  I wonder, I want to be really clear about this.
• 7:22
  It's not because I'm ashamed, but it's because I'd rather
• 7:24
  enjoy the meal and then fight with it.
• 7:26
  Like I'd rather enjoy the night, enjoy the meal and rather than
• 7:29
  fight about it and rather than fight about it and fight with
• 7:31
  it. So adaption is power, not
• 7:34
  failure. OK, Adaption is power, not
• 7:37
  failure. OK, then how about this one?
• 7:42
  How about the look? Hey, you know it, You know it,
• 7:46
  that tilted head, that raised eyebrow or like, are you OK
• 7:48
  face? I've had it thousands of times,
• 7:52
  times in line at the store. You know, I've even had it on
• 7:56
  stage in a, in a Parkinson's panel, right?
• 7:59
  And what's wild is sometimes people, they don't even realize
• 8:03
  that I have Parkinson's. OK, I've had folks approach me
• 8:06
  after I moderate a full event, a full event.
• 8:08
  I've moderated the entire thing that I tell my story.
• 8:11
  I talk about my medication and everything and, and, and people
• 8:15
  will come up to me and they'll go like, wow, that was amazing.
• 8:18
  Do you have someone in your family with Parkinson's?
• 8:21
  I'm like, buddy, that's my story, right?
• 8:25
  That's my what the that's my story.
• 8:28
  What are you doing when you're not paying attention?
• 8:29
  What's going on here? But it used to mess me up.
• 8:32
  But I've told I've, I've I've said that many times and it used
• 8:35
  to mess me up. And now I just say Parkinson's
• 8:38
  is weird. It doesn't always look the way
• 8:39
  you think it will look at all. So hack #3 is this set
• 8:45
  expectations when needed? So a quick explanation said with
• 8:49
  a calm and confidence goes a long way.
• 8:52
  All right, here's another story. This I'm like full of stories
• 8:54
  Today. I'm, it's story day.
• 8:55
  I've been, I've been kind of under the weather.
• 8:58
  My, my, my nose is kind of plugged.
• 8:59
  So whatever. But I, you know, I was kind of
• 9:02
  laying around and I, I kind of slowed down a little bit
• 9:05
  because, because you know, I, I was under the weather and I had,
• 9:08
  I started thinking about all these different stories.
• 9:10
  I was thinking about these awkward moments and these
• 9:11
  stories just kept popping up and popping up.
• 9:13
  And you know, Brian and I in the other podcast we talked about,
• 9:17
  we had, we had the 10 most awkward things people say to
• 9:20
  you. And if you haven't seen that
• 9:21
  video or that podcast, go check it out.
• 9:24
  It's really good. It's it's a long, but it's very,
• 9:26
  very good. But so maybe start me thinking
• 9:29
  about not just the awkward things that people say or the
• 9:32
  awkward comments they'll say, but those awkward moments,
• 9:35
  right? So I have all these stories
• 9:36
  running through my head. So anyway, here's one and it's
• 9:38
  still this one. This one still makes me laugh.
• 9:40
  OK, so I'm at the grocery store and I go to pay.
• 9:44
  I reach my debit card and instead of, you know, I reach
• 9:46
  into my debit card instead. I drop my keys, I drop my phone,
• 9:50
  I drop my Costco card and I drop a receipt for like 2010.
• 9:53
  And the cashier just stares at me and, and I, I go, I go.
• 9:57
  I'm sorry. I call that move the Parkinson's
• 10:00
  pocket dump. She looks at me kind of like
• 10:04
  what? And then she starts to laugh.
• 10:05
  But it was like an awkward laugh, OK?
• 10:07
  And so she didn't respond to like, she kind of just kind of
• 10:10
  like smiled and like, ha ha, you know, one of those ha ha joke.
• 10:13
  I mean, probably the way you're laughing at my dad jokes today,
• 10:15
  ha ha, right? So she gives me the ha ha.
• 10:17
  And I'm like, oh, my goodness. So I'm thinking maybe I slurred
• 10:20
  the Parkinson's heart, right? Because again, I'm, I'm having,
• 10:23
  you know, my anxiety is high now because I mean, I get phones
• 10:26
  everywhere. Everything's going crazy.
• 10:28
  And so I get through that. So now she's, you know, get
• 10:31
  everything going. So now I get my debit card out.
• 10:33
  OK. Now, I don't sure about where
• 10:38
  you're from, but where I'm from, I think my card has like $100
• 10:42
  limit on tapping, like tapping my my debit card.
• 10:47
  Then I like tapping my debit card because how many give me
• 10:51
  give me something in the comments here.
• 10:52
  How many of you have tried to get that little tiny card?
• 10:56
  I'm looking around for one as if I could show you a demonstration
• 10:59
  if you're watching this, but if you're listening, you wouldn't
• 11:01
  see it anyway. So it doesn't matter.
• 11:02
  But anyway, I, you know, trying to get that little tiny debit
• 11:05
  card in those little tiny space inside that that debit machine
• 11:08
  or that ATM machine. Good luck.
• 11:12
  All of a sudden, though, it kicked in with her with, with
• 11:15
  the, with the Costco lady. It kicked in because I think
• 11:20
  when I said, you know, that's just like my Parkinson, you
• 11:22
  know, whatever, you know, pocket overload, whatever called it
• 11:25
  that Parkinson, Parkinson Park. I can't even say it right now.
• 11:28
  The Parkinson's pocket dump. I don't know if she really
• 11:31
  caught on the Parkinson's part, But then all of a sudden I
• 11:33
  realized when I was trying to get this thing inside the
• 11:36
  machine and I couldn't get it in, Then I saw that look again
• 11:40
  and it and it kind of like 2 I saw the I saw the light bulb go
• 11:43
  off like, Oh my gosh, Parkinson's.
• 11:46
  And so she's like, can I help you?
• 11:47
  That's her. I'm like, sure, no problem.
• 11:49
  And then she kind of took my card and put it in for me.
• 11:52
  And then it was kind of weird after X was like, do you need
• 11:54
  someone to help you out? Do you need someone to push your
• 11:56
  card? Do you need someone?
• 11:57
  I'm like, no, I'm fine. No, I'm fine.
• 11:58
  No, I'm fine. But anyway, anyway, so here's
• 12:02
  the thing you have to do though, you have to embrace the absurd.
• 12:06
  This is hack #4 embrace the absurd.
• 12:09
  Because the truth is sometimes Parkinson's, it's flipping
• 12:13
  weird, right? It's flipping weird.
• 12:15
  You can either cry or laugh and laughing feels better.
• 12:19
  OK, so just decide I'm going to cry, I'm going to laugh.
• 12:22
  And sometimes you cry, you're good.
• 12:23
  Let it out, cry it out, cry it out.
• 12:25
  And sometimes you just have to laugh.
• 12:26
  But at the end of the day, I kind of like laughing better
• 12:28
  than crying. So I, that's the one I choose.
• 12:30
  Mostly I'm just going to laugh it off.
• 12:33
  Laugh it off. So I found that the that awkward
• 12:36
  moments are usually the hardest when we feel like we're being
• 12:40
  watched instead of understood. OK, think of what I just said.
• 12:43
  I feel like that the, the, the moments, the awkward moments are
• 12:47
  harder when we feel like we're being watched instead of
• 12:51
  understood. Just like that Lady I was
• 12:54
  talking about at Costco. So I talk to people around me,
• 12:59
  right? I'll say things like, hey, just
• 13:01
  so you know, sometimes my hand or my face doesn't behave, huh?
• 13:05
  Yeah, it's OK, You don't have to worry unless I ask for help.
• 13:09
  And they kind of go like, huh, It takes about 10 to 15 seconds,
• 13:14
  and everybody's like, huh? But then it opens the door for
• 13:19
  understanding instead of assumption.
• 13:21
  So why go by assumption? Why have everybody standing
• 13:24
  around wondering what's wrong with you or wondering what's up
• 13:26
  with this person? Or wondering if you're drunk or
• 13:27
  wondering if you're high or wondering if you have
• 13:30
  Parkinson's, Right? I'd rather just call a spade a
• 13:33
  spade. Hey, hey, you know what?
• 13:35
  Sometimes my stuff's going to do some wild things.
• 13:37
  We could be dancing in a second. If you see me dancing, it's OK.
• 13:40
  Let me dance. But I promise you, if I need
• 13:43
  help, I'll ask for help. So don't worry about me, right?
• 13:46
  So that that's hack #5 you have to invite people in.
• 13:49
  You have to invite them in. You don't have to explain
• 13:52
  everything, but a little context creates a lot of freedom.
• 13:57
  Let me say that clearly. A little context creates a lot
• 14:01
  of freedom. And I normally do this, this
• 14:04
  that hack at restaurants. So with with the waiter, the
• 14:08
  waitress, because I know ultimately whether I'm going to
• 14:12
  go be paying for something paying there's my what I mean,
• 14:15
  pop up a pain, whether I'm going to pay for something or whether
• 14:18
  I'm going to, you know, get my drink or spill my drink or who
• 14:21
  knows what's going to happen. Who knows, right?
• 14:23
  Who knows, but prepared. So I just kind of stayed out
• 14:26
  front. Hey, by the way, just going to
• 14:28
  give you a heads up, you know, here's where I'm at.
• 14:32
  So anyway, if I need help, I'll ask for help.
• 14:34
  If not, laugh with me, you know, join me.
• 14:36
  Let's do it. But let me say something, and I
• 14:40
  want to say this really, really clear, OK?
• 14:43
  You are allowed to be awkward. You're allowed to fumble, you're
• 14:46
  allowed to shake, you're allowed to freeze.
• 14:49
  And you don't need to apologize for existing.
• 14:52
  You're more than your symptoms. You are not a problem to be
• 14:55
  managed. You're not.
• 14:57
  You're a person learning to navigate something that's
• 15:00
  unbelievably complex, and you need to give yourself grace.
• 15:04
  And when you can, smile through the chaos.
• 15:07
  Because awkward might be unavoidable, but shame is
• 15:11
  optional. Stay with us.
• 15:16
  We'll be right back. And if this episode helped you
• 16:03
  breathe even a little easier today, Or maybe it made you
• 16:06
  laugh, or maybe maybe it didn't, Maybe you give me a Boo like it
• 16:13
  anyway, please. The more you like a video, the
• 16:15
  more you comment on the video, the further it goes.
• 16:19
  But like the podcast comments, you know, likes shares it tells
• 16:25
  the algorithms that it this is an OK video and it gets it out
• 16:29
  to more people. And this was an amazing
• 16:32
  community here. And when you jump in and you
• 16:34
  like a video or you start, you know, commenting and you jump in
• 16:38
  like that, we see this big spike because it goes out to other
• 16:42
  people that are looking and searching for help like this and
• 16:45
  looking and searching to talk about Parkinson's in real in
• 16:49
  real life. And you know what?
• 16:52
  If you ever need any encouragement, look through some
• 16:53
  of the comments. I cannot tell you, sorry, like I
• 16:57
  cannot tell you how many comments are like, I just found
• 17:00
  you. I just found you.
• 17:02
  I just found this community. I can't believe that all these
• 17:05
  people, even in the comments, are talking so openly and free.
• 17:07
  I've never seen anything like this.
• 17:10
  You're part of this, you're part of this.
• 17:12
  So let's not stop now. Let's not stop now.
• 17:16
  Help me, help me. Help me.
• 17:18
  Help me reach everybody. Help me reach more and I'll help
• 17:21
  you. I want to help you as well,
• 17:22
  right, So give it a like, give it a share and leave that
• 17:25
  comment, right? Hey, you know what you know what
• 17:28
  I read every single comment, every single one of them and I
• 17:31
  reply to every single comment personally, every comment I
• 17:34
  reply to personally. Now, I would apologize in
• 17:38
  advance. I know because you guys are so
• 17:41
  amazing and awesome. This channel is exploding.
• 17:44
  This podcast is exploding. I cannot get over the explosion
• 17:47
  that we're having. I think we're getting, you know,
• 17:49
  506070 new people every day. So give me a bit of grace,
• 17:54
  please. I'm, you know, I was sick.
• 17:55
  I was sick this weekend. My daughter had her wisdom teeth
• 17:57
  out. What a week, what a week I've
• 17:59
  had. So I was a little behind in the
• 18:01
  comments, but I think I've caught up.
• 18:02
  And if I, if I've missed some or I'm still catching up, please
• 18:05
  bear with me. I will do, I will do my very
• 18:08
  best to get there as fast as I can.
• 18:10
  But every single comment is important to me.
• 18:12
  Every single one of you is important to me.
• 18:14
  And hey, if you haven't subscribed and you're still here
• 18:17
  right now, hit that subscribe button.
• 18:19
  Click the bell though, and turn on the notifications so that
• 18:21
  every time a new podcast or a short video or any video is
• 18:25
  dropped, you'll be notified. OK.
• 18:30
  Now, if you haven't subscribed, right?
• 18:32
  Do that. It's a great time to do that,
• 18:34
  but you don't have to. There's no expectations here,
• 18:37
  not at all. And if you want more content
• 18:40
  that feels like a conversation and not a lecture, it's this is
• 18:43
  your space. And if you're looking for
• 18:45
  something even more than that, something more connected, I'm
• 18:49
  telling you, join the inner circle.
• 18:51
  Come join me. It's a live Zoom call.
• 18:52
  We do it once a month with people just like us.
• 18:55
  And it's real. It's just real.
• 18:57
  I, I sure as you know, I'm in there talking about my stuff
• 19:01
  too. OK.
• 19:03
  And then, you know, you also get easy or early access, but I'm
• 19:06
  doing some behind the scenes stuff as well.
• 19:07
  And those are just not the type of things you can put on the
• 19:10
  channel that go out everywhere. So that's why I mean, don't make
• 19:15
  money from this, this podcast or this channel, this YouTube it's.
• 19:22
  And if there is any money, so for a little bit like if the
• 19:24
  swag swag's looking really cool or the memberships, I just
• 19:29
  reinvest it back in the Parkinson's advocate to advocate
• 19:32
  for Parkinson's to get the word out there.
• 19:34
  So it's not a money thing. It's just a you and me thing,
• 19:38
  right? It's like a commitment for both
• 19:40
  of us. So anyway, there's no pressure
• 19:42
  at all. I love everybody, everybody.
• 19:45
  I love everybody. And I want to be here for you no
• 19:48
  matter what stage you're at or no matter where you're at in
• 19:50
  life. OK, So no pressure, just
• 19:53
  presents. It's all I ask is presents.
• 19:56
  You know, you don't have to show up perfectly.
• 19:57
  You just have to show up. Hey, the next one's coming out
• 20:00
  really soon. I might even drop 2 this week.
• 20:03
  So watch, watch again. And if you haven't that Bell?
• 20:06
  Click it, get the notifications, and the link is in the
• 20:10
  description below for everything you need, everything you need.
• 20:13
  And you have to remember, you're not alone in this.
• 20:16
  You are not alone in the awkward moments.
• 20:19
  You're not broken. You are a beautiful,
• 20:23
  complicated, hilarious work in progress, just like the rest of
• 20:27
  us. Thanks for being here and I'm
• 20:28
  going to see you in the next one.
• 20:34
  Parkinson's may be part of your life, but it doesn't get to
• 20:37
  define it. Thanks for listening to Living
• 20:39
  with Parkinson's, the good, the bad, and the reality.
• 20:43
  If this episode moved you, helped you, or reminded you
• 20:47
  you're not alone. Share it with someone who needs
• 20:49
  to hear it. Want to go deeper?
• 20:52
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 20:55
  community, and a Direct Line to Bryce.
• 20:58
  You'll find the link in the show notes.
• 21:00
  Until next time, keep showing up and keep doing life today.