Latest / Living with Parkinson’s | Bryce Perry / 5 Things People Without Parkinson’s Will Never Truly Understand

Transcript

5 Things People Without Parkinson’s Will Never Truly Understand · Living with Parkinson’s | Bryce Perry

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  Have you ever had somebody without Parkinson's act like
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  you're exaggerating, even when you're struggling with the
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  simplest things? Yeah, me too.
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  And more times than I can count. Well, today we're going to be
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  talking about the five things people without Parkinson's will
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  never truly understand and stick around to the very end because
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  #5 is something I've never shared publicly.
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  Plus, I've got a pricism that might just flip the way you
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  think about it. Welcome to Living with
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  Parkinson's, The Good, the Bad, and the Reality.
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  Real talk, real life, real community with Bryce Perry.
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  Let's begin. Hey friends, welcome back.
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  It's great to see you here. And if we haven't met, I'm Bryce
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  and this is Living with Parkinson's, The good, the bad
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  and the reality. And I've been living with
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  Parkinson's for over 15 years. And on this channel, we talk
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  about real life, the real life side of Parkinson's, not just
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  the stuff in textbooks, the messy, the funny and the hard
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  truths. And a quick shout out to my
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  loyal viewers in the inner circle.
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  Thank you for always coming back and supporting me.
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  And if you're new here, make sure to subscribe because we put
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  out these episodes like 3 * a week.
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  Plus Sunday is our live on YouTube with my buddy Brian.
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  So don't miss that. But before we dive in, drop a
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  drop me a comment below. What's the one thing that you
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  wish people without Parkinson's understood about your life?
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  I might just feature it on an upcoming episode.
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  And remember, I read and I reply to every single comment, so
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  don't be shy. All right, Well, let's get into
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  it. Here's the number one thing, or
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  or here's the first thing that I wish people with Parkinson's
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  would know, but they'll never know.
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  It's the invisible battle inside your body.
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  Now, this one started early for me, before I even had my
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  official diagnosis. On the outside, I looked fine.
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  I was working, smiling, still showing up to meetings like
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  nothing was wrong, but inside it was like my body was running
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  Windows 95. Well, someone else had upgraded
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  to the latest MacBook. My muscles felt stiff, my energy
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  was drained and every move took more thought than it should.
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  You know I remember this one meeting where I kept adjusting
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  my chair, trying to hide how rigid my arm was.
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  Afterwards I remember this Co worker of mine.
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  They said, you know, you seem distracted today.
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  And I laughed and I said, yeah, I'm just tired, you know?
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  And inside I was thinking, if only you knew how hard I was
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  fighting just to sit still. The hard part is that when
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  people can't see it, they don't always believe it.
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  They think you're just being tired or you're just off a
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  little. And that misunderstanding can be
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  just exhausting as the symptoms themselves.
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  And now, so you've had something like that happen.
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  Do you drop the word invisible in the comment?
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  Just so we know we're in this together?
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  Invisible in the comment. OK, here's the second thing.
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  The second thing that they're just don't get.
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  It's how exhausting simple things can be.
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  You know, about five years in, I had a day where I went to just
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  make a sandwich. Just a sandwich, bread, meat,
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  cheese, nothing fancy. By the time I got it made, I was
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  leaning on the counter like I just run a marathon.
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  You know, Parkinson's fatigue isn't like, normal tired.
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  Normal tired is. I stayed up too late last night.
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  Parkinson's tired is someone secretly gave me, gave up the
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  gave up gravity on earth and forgot to tell me.
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  And it's not just sandwiches. Laundry, walking across the
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  parking lot, even brushing your teeth can feel like an Olympic
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  event some days. I actually joked with Carmen
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  once. If making this grilled cheese
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  doesn't qualify me for a gold medal, then I want a refund.
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  She rolled her eyes, but she also handed me the spatula.
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  And after explaining after and explaining that kind of fatigue
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  to someone who has, who has never felt it, it's like trying
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  to describe a brand new color that they've never seen.
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  It's that difficult. And by the way, if you like this
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  kind of real talk about Parkinson's, hit that subscribe
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  button. It's free.
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  And it tells YouTube that that conversations like this matter.
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  OK, here is #3 the third the story #3 the mental energy it
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  takes just to move now. For me, it started around year 7
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  or 8, or even before that. Walking, turning, picking
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  something up. Things that used to be automatic
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  now require this entire whole mental checklist.
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  Like, where's my balance? How's my timing?
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  Will my foot crash? Is the floor slippery?
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  Do I look like I'm wobbling? It's like having a a Nassau
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  launch launch sequence running in the back of your brain, like
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  321 step. You know, I once stood at a
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  doorway at a conference completely overthinking how to
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  step through without freezing. People are behind me waiting.
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  So I just blurted out, sorry folks, just buffering got a
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  laugh. But inside I wasn't joking
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  beside it. Inside I was just, I was
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  petrified. And hey, it's crazy.
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  But this should and could and probably does sound familiar.
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  And if it sounds familiar, hit that like button for me so more
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  people can see the real set of Parkinson's.
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  But we don't pull punches here. And when people, just people
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  without Parkinson's, they just say just relax.
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  Or if only it were that easy, right?
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  It's almost funny. It's almost funny.
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  Just relax, OK? I'll just relax and it's all
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  better, right? And just to be clear, everything
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  that we're talking about today comes from Parkinson's itself.
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  It's not just getting older or, you know, being out of shape.
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  So if that's all it is straight out from Parkinson's, thank you,
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  Parkinson's. Thanks, Parkinson's.
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  All right #4 your good days don't mean that you're cured.
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  I've had people see me on a good day and they.
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  And I've actually heard this before.
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  Wow, you look great. Are you better now?
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  Nope. Parkinson doesn't take a
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  vacation day, and a good day is just that.
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  It's a good day. You know, I once had a friend
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  pat me on the back and say, looks like they fixed you.
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  I wanted to reply. Yeah, the warranty was up, so
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  they patched me, you know? Instead, I smiled and said
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  thanks because honestly, they meant well, but it was just
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  crazy. This people just can't and won't
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  get it. So here's the truth.
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  OK, here is the fifth thing that I just people with part who
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  don't have Parkinson's will never get.
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  And this is the one that I've never shared publicly.
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  This is the one I talked about in the beginning.
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  This one is personal and honestly a little tough to
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  admit, but overtime I realized that every social event, every
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  outing, every meeting, I was running like quiet calculations
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  in the background. Will I freeze in the doorway?
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  Will I spill my drink? Will I forget the word I need
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  mid sentence? It wasn't just about managing
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  symptoms, it was about managing embarrassment before it even
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  happened. And the truth is that constant
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  background scanning has probably kept me from doing certain
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  things or going certain places. You know, sometimes the fear of
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  what might happen is worse than what it actually does and it's
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  exhausting. It's exhausting trying to
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  calculate everything and pre think everything and pre worry
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  about what might happen and not might happen.
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  Now, I've never said that one out loud before.
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  I but I'm saying it now because you know, if you felt the same
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  way, I want you to know it's OK. It's OK to admit it and it's OK
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  to start pushing back, push back against it and even little tiny
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  steps forward make all the difference.
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  With Parkinson's, the things that people don't understand
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  aren't just symptoms. They're the choices, the hidden
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  calculations and the invisible battles that nobody else sees.
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  All right, you've made it this far.
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  So you've unlocked my Bryce system for this episode, and
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  here you go. With Parkinson's, your strongest
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  muscles aren't in your body. They're in your ability to keep
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  showing up when nobody else sees the fight.
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  So let me ask you, which one of these five hit you the hardest?
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  Or what would you add to the list?
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  Drop in the comments and remember I read everyone if this
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  episode connected with you, give it a like and share it with
• 8:48
  somebody who could use it and subscribe so you don't miss
• 8:51
  future videos. And if you want a place where
• 8:53
  you can talk about this 24/7 with people who truly understand
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  it, check out the Inner City Community.
• 8:59
  The link is right below. And you know what?
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  Thanks for watching and until next time, keep showing up, keep
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  laughing, and keep doing life today.
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  Parkinson's may be part of your life, but it doesn't get to
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  define it. Thanks for listening to Living
• 9:17
  with Parkinson's, the good, the bad, and the reality.
• 9:21
  If this episode moved you, helped you, or reminded you
• 9:25
  you're not alone. Share it with someone who needs
• 9:27
  to hear it. Want to go deeper?
• 9:30
  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.