Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s Mindset: The 3 Lies That Nearly Held Me Back (And How to Break Them)

Transcript

Parkinson’s Mindset: The 3 Lies That Nearly Held Me Back (And How to Break Them) · Living with Parkinson’s | Bryce Perry

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  You ever had that moment where your body says Nope, but your
• 0:03
  brain says we're fine? Yeah, well, welcome to my life.
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  And I've told myself some ridiculous things over the
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  years. I'm just tired.
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  It's probably nothing. My leg isn't shaking.
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  I've just got rhythm. And you know what?
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  For a long time, I actually believed myself.
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  I convinced myself that if I just kept pushing through, if I
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  ignored the signs long enough, that maybe Parkinson's would get
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  the message and back off. Spoiler alert, it didn't.
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  Do you ever do that? Do you ever tell yourself a
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  story that sounds good enough to keep you comfortable even
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  through? Even though deep down you know
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  it's not true? Because that's what I did for
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  years. And I'm not talking about little
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  white lies. I'm talking about the big ones.
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  The kind that cost your peace, cost your progress and your
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  confidence. Well, today I want to talk to
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  you about the three biggest lies I told myself about Parkinson's,
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  what they almost cost me, and how I learned to stop believing
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  them. And stay tuned till the end,
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  because Carmen's going to share something from the care partner
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  side that completely changed how I look at asking for help.
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  She's got a perspective that'll hit you right in the heart.
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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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  Hey everyone, I'm Bryce and I am so glad you're here.
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  You know, every time I sit down to film one of these, I picture
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  all of us sitting around having a coffee, just talking about the
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  real stuff, right? Because that's what this channel
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  is all about. And before we get started, I
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  just want to say a huge thank you to the huge, huge thank you.
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  You know, in the month of September alone where 1700 new
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  people joined our community here.
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  And that's incredible. So whether you've been here
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  since day one and you know who you are or you're brand new,
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  welcome. This is living with Parkinson's,
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  the good, the bad, and the reality.
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  And here we talk about the truth of it all, the hard parts, the
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  funny moments, and the ways we keep moving forward together.
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  So if you haven't subscribed yet, go ahead, hit that button
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  because this space is about real people, real stories, and real
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  hope. All right, let's get into it.
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  You know, the first lie that I told myself, the one that nearly
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  became my full time philosophy, was I've got this under control.
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  And I said it like a badge of honor.
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  I said it when my body wasn't listening.
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  I said it when I drop things, when my voice trembled, when I
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  missed a dose. No worries, I've got I've got
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  this handled. It was like the national anthem
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  of denial. And one day I was walking
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  through the mall carrying a tray of coffee because of course I
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  told everyone, I've got this. And halfway across the food
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  court, my hand started doing that slow, graceful twist.
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  You know, you know, it's, it's not going to end well when that
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  starts to happen. 4 lattes hit the floor in a Symphony of
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  splashes. It was like, I don't know, like
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  modern art foam everywhere. I'm standing there covered in
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  hazelnut drizzle saying it's fine, I've got it, it's all
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  good, don't worry about it. Meanwhile, my friends are
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  running over with napkins and and one guy's laptop bag now
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  smells like caramel forever. That was my that was my moment.
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  Because what I realized later was that it wasn't about coffee,
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  it was about control, and I was terrified of losing it.
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  I thought admitting that I needed help and Parkinson's was
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  winning. But the truth is, pretending you
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  have control when you don't isn't strength, it's complete
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  stress. And if you want another example,
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  here's one from early on. I was at work one day.
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  I was giving a presentation. I was trying to hard.
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  I tried really hard to hide my hand tremor and I held, I held a
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  pen just to keep it, you know, still.
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  And halfway through, I dropped the pen and then the notes and
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  then the little clicker thing that flips the screen.
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  You know, I tried to joke it off, saying, well, I guess my
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  enthusiasm's contagious. But inside, I was mortified.
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  And that was the day that I realized my my obsession with
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  control was actually making me lose it faster.
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  Because when you fight to appear perfect, you drain all the
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  energy that you need to actually perform.
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  And I know a lot of you can relate.
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  You skip telling your doctor about symptoms because you don't
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  want to sound dramatic. You downplay things that with
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  your family because you don't want them to worry.
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  You think if I just manage this quietly, I'm stronger.
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  But here's the secret. Control doesn't come from
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  denial. It comes from awareness.
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  When I finally got honest, things changed.
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  I started writing down what wasn't working when my meds
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  kicked in, when they didn't, what foods messed with me and
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  what kind of day I was. Nothing fancy, just notes.
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  And the first time I showed that to my neurologist, he said,
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  Bryce, this is gold. I laughed and I said, it's a
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  grocery list with attitude, man, just be careful.
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  But but that's when I realized honesty gives you data and data
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  gives you options. So here's a little challenge for
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  you. If you've been telling yourself
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  I've got this when you really don't, I want you to comment
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  below. And I want you to say I'm
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  learning to adapt because that's where control actually begins.
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  Learning to adapt in the comments.
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  All right, let's move to the second lie.
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  And this one's tricky because it sounds kind of, I don't know it.
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  It sounds, I don't know it. It's one that sounds kind and
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  selfless, right? But it's really fear in
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  disguise. It's I don't want to be a
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  burden. Now, this one really broke me.
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  It nearly broke me because I genuinely thought that I was
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  protecting the people I love by keeping things to myself.
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  I thought I was sparing Carmen's stress by doing everything
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  alone, but that was really. But what I was really doing was
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  shutting her out. And one night I'm in the kitchen
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  trying to open a jar of salsa. It's one of those vacuum sealed,
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  stubborn, unbreakable jars sent from the factory of frustration.
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  You know the ones that pop when you finally get it?
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  Like it's some big relief, like, oh, I got the sound.
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  I opened it. I'm twisting, I'm tapping, I'm
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  running under, under hot water. I'm banging it with a with a
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  knife. Nothing.
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  Carmen walks in. She smiles and says do you want
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  help? And I go, no, no, no, no, I've
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  got it. And you already know how this
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  ends. You already know it.
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  You can see it. You see how this ends, don't
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  you? Right.
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  Lid pops, the jar slips and salsa explodes everywhere.
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  It's like it's like a Jackson Pollock painting of the of the
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  cabinets. Carmen just stands there, arms
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  crossed, saying, still don't need help.
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  You know, we laughed about it, or I should say she laughed
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  about it. But later she said something
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  that stuck with me and she said it's not about the jar, it's
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  about you letting me in. Now, how many you thought that
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  when I said you know exactly what's going to happen?
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  How many thought that I that Carmen was going to do it and in
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  this one little twist, she was going to open it up if that was
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  you. But twist of Carmen, twist of
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  Carmen in the in the comments. Let's see how many people like
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  fooled at that little thing. But you know, I wish I would
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  have given a turn for the little twist pop, but no, I had to wear
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  some salsa that day. And that's what I've realized,
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  though, that refusing help isn't noble.
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  It's isolating. And when you keep saying I've
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  got it, what your care partner hears is I don't need you.
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  And that's the last thing they want to hear.
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  They want to help. They want to help and they want
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  to feel like they're a part of your team.
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  You know, there's another time that I tried to assemble a new
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  bookshelf by myself because, you know, apparently I thought Alan
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  keys were my love language. Never.
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  I could have waited for help, but Nope, I charged, you know,
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  charged ahead. Halfway through, it looked like
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  I was modern art again. Backward shelves, upside down
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  brackets, leftover screws. And I clearly had somewhere more
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  important. The screws had somewhere way
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  more important to be than around me, because I don't think I ever
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  found them. Carmen walks in and said I love
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  it, it's abstract. I said no, it's independence,
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  she said. It's crooked.
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  I realized my pride was stealing time from us.
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  Instead of spending that afternoon together, I spent it
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  trying to prove something that nobody asked me to proof.
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  Carmen later wrote something I don't want to share here, and
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  she said it's hard watching someone you love struggle and
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  not know if you're supposed to step in and stay or stay back.
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  I don't want to hover, but I also don't want to watch.
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  The best thing he ever did was start telling me what kind of
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  help he actually needed. Sometimes it's physical,
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  sometimes it's emotional, sometimes it's just space.
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  And when he tells me, I feel like we're more of a team again.
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  She's right. You know that your care partner
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  isn't just your support system, they're your teammate.
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  You can't win a Double S match if you never pass the ball.
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  So here's something you can try this week.
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  Instead of saying I don't want to be a burden, try saying this.
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  Here's one thing that would make my day a lot easier.
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  Doesn't that be huge? It could be.
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  Can you grab me that water bottle or can you drive today?
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  It's not a weakness, it's a connection.
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  And if you're a care partner watching this, Carmen wanted me
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  to include her message to you. This is Carmen's hair partner
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  corner. She said this and you know that
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  she says it every time. You can't pour from an empty
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  cup. You need to take care of
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  yourself so you can help and take care of your person.
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  I'm just saying I'm fine. Isn't taking care of it.
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  It's ignoring it and sometimes it's OK to say no, I'm not fine.
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  That's not failure, that's honesty.
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  And that's how you reach out for help.
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  So again, I'm doing this again and I'm hoping you'll join me
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  again. Drop still Learning in the
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  comments if you're a care partner and if you're living
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  with Parkinson's, right? Team effort because we're in
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  this together, learning as we go.
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  That was for me, Carmen's part headed at, at the what was it
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  again? What did she say?
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  Still learning. And mine was team effort.
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  So your person with Parkinson's and you're like, you know what?
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  I'm going to make an effort to make it a team effort.
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  I want you to write that in the in the comments.
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  OK, now that brings me to my third lie.
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  But before I get into that, because this is a big one, I
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  want to just remind you or tell you a couple, 2, two things.
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  Number one, I have a Parkinson's boot camp.
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  I put it together. It is huge, man.
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  It's getting bigger by the moment.
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  I'm still piercing it, pieces of it together.
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  I think there's like 27 sessions with me on video, think there's
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  four live with me on video. And it's what what it is.
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  It was birthed out of everything that I wanted.
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  I wish I had when I was diagnosed and my 15 years of
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  journey, 15 years I've had this thing.
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  So I teach you how to track symptoms.
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  I teach you about medication. I teach you about tricks and
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  hacks. I teach you about ways to talk
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  to your doctor a lot deeper than just a YouTube video.
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  This was really one-on-one. There's worksheets, there's
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  things that you can write down, things that you can keep keep
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  with you. It's like booklets.
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  It's humongous. I, this is a massive package and
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  you know, it's the first time that I've ever done it, first
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  time I ever put it out there. So, you know, it's, it's, it's
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  not that expensive, but it's really not at all.
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  It's taken me months and months to put this together, but I
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  wanted to do it because I want so badly for someone who's
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  either just been diagnosed and I mean, within the last year, year
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  and a half or two years, right? Or somebody who has been like
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  was like me and is still in denial.
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  But if you're ready to get serious, if you're ready to
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  understand, you know things more things about it.
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  If you don't want to know how to talk to doctors, you want to
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  know how to track medication, you want to know how to do this
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  and how to do that and how to fight back and push back now,
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  how to push back the progression.
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  Because I'm telling you 15 years in, I, I was told five years,
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  I'm 15 in. So I think I'm doing something
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  OK and doing something right. So there's only 9 spots left in
• 12:21
  this, in this thing and it starts in two weeks.
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  Seats are open now, people are getting into their huddles.
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  You'll be put into a group. You know, it's boot camp, so
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  you'll be a recruit, right? And there's two groups that
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  we're going to send out here into the boot camp and it's the
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  the dopamine dozen. And I won't tell you what the
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  other one is because that'll be might might be yours.
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  So anyway, Join Now. There's only nine seats.
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  Once they're sold out, they're sold out, we'll shut it down and
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  you can go on a waiting list for the next one.
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  But I implore you to really, really, really invest in
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  yourself. Invest in you.
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  You want to get fired up. You want to you want to break
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  down this stuff. You want to get the stigma
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  behind you. You want to get the answers to
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  the questions that you really want to know what we're going to
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  do at one-on-one. OK, one-on-one all together.
• 13:04
  OK, so boot camp, it starts soon and it's almost full.
• 13:10
  Links in description. OK, anyway, that was my little
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  plug. But I'm I'm serious about it.
• 13:15
  I I'm so excited about it because I know it's going to
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  radically change people's lives and the way you think we talk
• 13:21
  about mindset too. OK, Oh, and sorry, someone asked
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  me the other day, what about if I'm a care partner and my my
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  spouse or my who I'm taking care of is it doesn't want to go, no
• 13:32
  problem. You come on in, you learn about
• 13:34
  it. It's there's there's compare
• 13:36
  care partner companion stuff that goes with it.
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  So it's for care partners, it's for people with Parkinson's,
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  it's for you. OK, so let's get back to this
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  third lie. Now, the one that's the hardest
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  to admit. This is the one that's so hard
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  to admit. You ready for this?
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  This is just how it is now. I said that one for years.
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  It is what it is, sometimes out loud, sometimes just in my head,
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  and I didn't even realize how much it was holding me back.
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  When you live with a chronic condition, it's easy to start
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  accepting limitations way too soon.
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  You get used to fatigue, stiffness, bad balance, slow
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  mornings, and before you know it, you stop trying new things,
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  you stop making plans, and you start shrinking your world so
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  you don't have to risk failing. I did that for a while.
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  I did. I thought my best days were
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  behind me. I stopped speaking publicly
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  because I didn't want to people to see me.
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  Tremor, tremor. I stopped saying yes to things
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  that scared me and I told myself it's fine.
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  It's just how it is. It is what it is.
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  But that lie almost made me give up one of the most important
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  parts of my life. A few years ago, I was asked to
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  speak at a Parkinson's event, and my first thought was, no
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  way, People don't need to see me like this.
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  You know? I remember someone looked at me
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  and said, you know, maybe that's exactly why they do.
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  So I went. I was nervous, shaking, probably
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  more stiff than confident, but I did it.
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  And afterwards a woman came up to me in tears and said that's
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  the first time that I've seen someone like me standing up
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  there. What that moment changed
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  everything for me because I realized that what I saw was as
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  weakness was actually a connection.
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  My just how, my just how it is was someone else.
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  It was someone else. If he can do it, maybe I can do
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  it. It's crazy.
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  And here's another story. You know, a friend of mine, Jim,
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  told me that he stopped going to his local gym because he didn't
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  want people staring when he moved slower.
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  Then one day his granddaughter said, Grandpa, come to my dance
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  recital. He sat in the back, and he
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  realized he'd rather move slowly in public than sit still in
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  private. He went back to that gym the
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  next week. Get it?
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  Jim went to the gym. He told me people stared, but
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  they smiled and some of them stared and started asking
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  questions. I think I changed a few of their
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  minds that day, He said. That's what breaking the line
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  looks like. It's not heroic.
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  It's honest. And if you catch yourself
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  thinking this is just how it is, or it is, it is what it is, I
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  want you to challenge it. Ask yourself, what's one thing I
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  can still do? Not ten things, one thing.
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  Maybe it's walking an extra block.
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  Maybe it's dancing in the kitchen.
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  Maybe it's joining the support call.
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  That one small act of resistance tells your brain we're still in
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  this. There's even science behind it.
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  Do you know that when you put yourself slightly outside your
• 16:51
  comfort zone, you trigger neuroplasticity?
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  Your brains rewire, dopamine starts firing, and suddenly your
• 16:59
  confidence grows. So every time you move, every
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  time you try, every time you're just not surviving, that you're
• 17:05
  actually teaching your brain to fight back.
• 17:08
  I want to give you a few tools to stop believing these lies.
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  I want to give you a few tools so that you can stop believing
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  these lies. And when they sneak in, because
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  let's be honest, they always come back.
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  They're always going to be there.
• 17:23
  Now the first thing is awareness.
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  Awareness. The moment you catch yourself
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  saying it's fine, I've got this, it is what it is, Pause and ask,
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  would I say that to someone? I love you wouldn't.
• 17:37
  You wouldn't. So don't say it to yourself.
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  The second is humor. If you can laugh at it, you can
• 17:45
  take away its power. Parkinson's already takes
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  enough. Don't give it your joy too.
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  And the third? It's community.
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  Talk to somebody who gets it, whether it's a friend, a care
• 17:55
  partner, or somebody in the inner circle community.
• 17:58
  Speaking the truth out loud turns isolation into connection.
• 18:03
  And if you're new to this whole thing, don't forget about that
• 18:05
  boot camp. It's built for you, OK?
• 18:09
  Teaches you how to live, not cope with Parkinson's.
• 18:12
  Did you hear what I just said? The boot camp teaches you how to
• 18:16
  live, not cope with Parkinson's. Now, here's another little tip
• 18:20
  that helped me when I started slipping into one of those lies.
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  I would say it out loud and I'd follow it with isn't that true,
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  Bryce? Sometimes Carmen, Carmen
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  overhears me and she yells from the kitchen.
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  Nope. And that usually fixes it.
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  And Speaking of Carmen, she says that humor might not fix
• 18:37
  everything, but it sure makes for some more.
• 18:40
  Sure makes them more tolerable. You know what?
• 18:43
  She's really right about that. If you tell one more story
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  before, you know, she always says if you tell me one more
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  story, but I'm going to tell you one more story before we close.
• 18:53
  The other day I was trying to screw the lid back on a peanut
• 18:56
  butter jar, you know, And Carmen offered to help and I said no,
• 19:00
  I'm just testing my patients. She said good, because mine's
• 19:04
  run out. Looked, I'm going to laugh at
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  what? And that little thing, that
• 19:08
  humor that doesn't fix Parkinson's, but it sure as hell
• 19:12
  makes it easier to live with. And here's what I know after 15
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  years of this disease, the most dangerous lies aren't the ones
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  people tell us. They're the ones we tell
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  ourselves because those are the ones we start to believe.
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  But when you stop lying to yourself, even just a little
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  bit, you start to live again. And here's my challenge for you.
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  Drop in the comments which one of these lies you've caught
• 19:34
  yourself believing lately. And then write one thing that
• 19:37
  you're going to do this week to prove it wrong.
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  And while you're down there, hit subscribe.
• 19:41
  Because every time you do, you help.
• 19:43
  You help this message reach more and more people who need to hear
• 19:47
  it. And join the inner circle if you
• 19:50
  want to connect deeper with people who get it.
• 19:52
  And if you're new here, start that boot camp.
• 19:54
  Let's get going. It's the best way to get your
• 19:56
  footing and find your people. And guess what?
• 20:01
  It's now time for today's bricism.
• 20:03
  Here we go with Parkinson's. The truth doesn't make the
• 20:06
  journey easier, but it sure makes it lighter.
• 20:10
  And that's the truth. And until next time, I want you
• 20:14
  to keep showing up. I want you to keep being honest
• 20:17
  and I want you to keep doing life today.