Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s Awareness: Why Staying Silent Is Hurting Us (And How We Change It)

Transcript

Parkinson’s Awareness: Why Staying Silent Is Hurting Us (And How We Change It) · Living with Parkinson’s | Bryce Perry

• 0:00
  What keeps you up at night about Parkinson's?
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  Is it the stiffness, the fatigue, or the worry about
• 0:05
  tomorrow? Or maybe it's the silence, that
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  feeling that nobody out there really understands what you're
• 0:13
  going through. I used to keep it all bottled
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  up. For five years after my
• 0:18
  diagnosis, I kept my head down. I thought saying silent would be
• 0:22
  easier. One thing I learned that silence
• 0:25
  doesn't fix anything and complaining doesn't change
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  anything. And the turning point for me was
• 0:31
  the first time I spoke up. I hit record, I shared my story,
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  and I braced myself for nothing. Instead, I got flooded with
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  responses. You know, my video about hidden
• 0:41
  side effects got 173 comments, Not likes comments.
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  People opened up. They were sharing things that
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  they've never told anybody before.
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  And that's when it hit me. We weren't just talking about
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  symptoms, we were building something bigger, a movement
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  waiting to happen. The hidden reality that no one
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  talks about, that the doctors don't tell you.
• 1:06
  And today we are going to break that forever.
• 1:11
  Welcome to Living with Parkinson's, The Good, the Bad,
• 1:14
  and the Reality. Real talk, real life, real
• 1:18
  community with Bryce Perry. Let's begin.
• 1:23
  Hey everyone, I'm Bryce and this is living with Parkinson's.
• 1:26
  The good, the bad, and the reality.
• 1:28
  Now, this podcast is more than videos, it's more than audio,
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  it's more than me. And here's something that you
• 1:35
  might not realize or no, I only started these podcasts at the
• 1:38
  beginning of this year. You know, that's right.
• 1:41
  Like just months ago as an example, in the last three
• 1:44
  months, I think over 6000 new people have joined were 5000 new
• 1:49
  people listening to the audio podcast.
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  And that's not luck, that's not random, that's momentum.
• 1:56
  And that's proof that we're doing something, something that
• 1:58
  matters here, you know, And the truth that doctors won't tell
• 2:01
  you about Parkinson's, it needs to be said.
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  So today, I want to challenge you, yes, you, to stop just
• 2:09
  surviving and stop changing how the world sees Parkinson's.
• 2:14
  You know, stay tuned because later in this episode, I'm going
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  to share something brand new that we created, OK?
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  And it's not just a song. It's a music video.
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  It's not just a song. It's a battle cry, and I want
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  you to see it. You know, the truth is, I never
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  set out to be the leader of a movement.
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  I was just trying to figure out how to live with this freaking
• 2:35
  disease. But then thousands of people
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  start showing up. People who are tired of being
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  invisible, tired of being ignored, tired of feeling like
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  their voice doesn't matter. And that's not an accident.
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  That's a calling. And I'll take it on.
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  But here's the truth. A movement doesn't happen
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  because one guy with Parkinson's has a YouTube channel or puts a
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  podcast out. A movement happens when
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  thousands of voices come together and refuse to be
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  ignored anymore. And this changes everything.
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  And that means I need you. Not somebody.
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  Not when it's convenient. I need you right now.
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  I know that some of you are thinking, hey, Bryce, I'm too
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  old. My symptoms are too advanced or
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  I don't know how to get started. Well, let me let me stop you
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  right there. Too old.
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  That just means you've got wisdom and stories that younger
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  people are desperately need to hear.
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  You've walked the road. You're the voice of experience,
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  and movements are built on web, on wisdom.
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  Too symptomatic. Your presence alone proves
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  something. When people see you show up,
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  even on hard days, it shatters the stereotype that Parkinson's
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  means that you're out of the game.
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  You're not out of the game. How about not good with
• 3:50
  technology? Get over it.
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  That's OK. You don't have to live stream on
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  TikTok. You can start by telling your
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  doctor the truth yet your next appointment, or sharing your
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  story with a friend, or typing 2 words in the comments.
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  Just say I'm in. That's all you need to do to get
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  started. And nobody is excluded from
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  this. Nobody gets to say I can't
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  because your voice, your story, your courage, that's what fuels
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  the movements. What they don't want you to know
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  is this, that the system works better when we stay quiet.
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  But we're not staying quiet anymore, are we?
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  Why does it matter so much? Because Parkinson's substances
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  just affect our bodies. It affects how the world looks
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  at us. And right now, too often we're
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  seen as broken, fragile, fading. But that's not the truth.
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  We're resilient, we're fighters, and we're here.
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  We're still here, aren't we? We're still here.
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  And if we don't change the script, if we don't stand up and
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  say this is who we really are, this is what it really is and
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  this is what it really feels like, then who will?
• 4:58
  You know, this movement is about visibility.
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  It's about dignity. It's about making sure the next
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  person diagnosed doesn't feel as lone as we once did.
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  It's about care partners who need just as much support as we
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  do. It's about proving that
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  Parkinson's may not slow us down, or it may slow us down,
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  but it will not silence us. This is the hidden reality no
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  one talks about. But starting today, join me.
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  Let's start. We will, man, I get fired up.
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  I'm so fired up right now. And you know what?
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  I asked Carmen for Carmen's care partner corner on this.
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  And this is what she had to say. She said hi everyone.
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  It's Carmen. And here's why care partners
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  need this movement too. We don't get a manual.
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  We're figuring this out alongside you one day at a time.
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  And sometimes care partners stay silent because we because we
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  don't want to add more stress. But silence is heavy for us too.
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  When we speak up, when we connect with other care
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  partners, we join the movement and suddenly we're not carrying
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  it alone anymore. We can share what's hard, we can
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  celebrate what's good, and we can remind each other that we're
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  still learning. And that is OK.
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  So if you're a care partner, I want you to commit or comment
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  still learning. Because the truth is, none of us
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  have all the answers. But together, we have enough,
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  man. That's well said.
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  Thank you. Thank you, Carmen.
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  You see, like, this isn't just about me.
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  It's not even just about people with Parkinson's.
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  It's about all of us. Patients, care partners, family
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  and friends. And here's the best part.
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  You don't have to be perfect to be powerful.
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  You don't have to have all the answers.
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  Hell, I once wanted a fork and then accidentally asked for a
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  flashlight. You know we still laugh about
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  it, right? They still don't let.
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  Let me live this one down. If I can keep showing up, if
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  Carmen can admit she's still learning, then you can too.
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  You've got a voice and it matters.
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  And right now, I want everyone to do something together.
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  Look at that subscriber count below.
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  We're at like 10,163 people and I'm recording this right by the
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  end of the day. Let's make that number jump.
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  Not for me, but for the person who gets diagnosed tomorrow and
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  needs to know that he's not alone.
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  Hit subscribe right now. Be part of the proof that this
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  moment, this movement is alive, that we're not dead, that we're
• 7:30
  moving forward. OK.
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  I told you earlier to stay tuned.
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  And here it is. OK, Put together like a little
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  video, a music video. And we played it inside the
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  inner circle. And it's it's 3 minutes long,
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  OK. But it's not about music.
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  It's a challenge. It's a battle cry for the Trail
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  Blazers, the ones ready to do more than just survive.
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  I want you to. I don't want you to just watch
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  it. I want you to feel it.
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  And then I want you to ask yourself a question.
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  Ask yourself, am I ready to move from silence to action?
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  All right, here it is. What's the story of survival?
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  This is a movement. Welcome to the inner circle.
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  We're the ones who lean in when it's hard.
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  Who raise our voices shining through the dark.
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  Asking. All the questions that nobody
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  dares finding strength in truth, pushing past the.
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  Scares. We tell razors truth tellers, We
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  see leave hands gone. We challenge the fire.
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  We carry each other along, not just survivors.
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  We rise and we stand with humour, honesty and heart in our
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  hands. On the days when hope feels out
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  of reach, we look one another. We practice what we preach
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  purposes in our step, fire in our eyes.
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  Together we conquer every mountain we climb with their
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  Blazers. They tell us we seal it and
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  scar. We challenge the fight.
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  We carry each other alone, not just survivors.
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  We rise and we stand with humor, honesty, and hard in our hands.
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  Lift out, closes in. We speak truth over fear.
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  The inner circle's voice is always near to remind you who
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  you are, to boost you. When you fall, we stand behind
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  you. United we call.
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  We'll tell Blazers to tell us we still live and storm.
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  We challenge the fire. We carry father along.
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  This isn't a support group. It's our battle fire in the
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  inner circle. Ask yourself this am I ready to
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  move from silence to action? You have a choice.
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  Here's your choice. Publicly drop I'm in in the
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  comments and share one thing that you've been staying quiet
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  about. That's how movement start.
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  One person speaks, others follow.
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  Share this video, get in front, get this in front of someone who
• 12:00
  needs to hear it, needs to know they're not alone, that they're
• 12:03
  not alone anymore. Subscribe because when you do,
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  you're not just clicking a button, you're joining a
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  movement. And privately, if you're ready
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  to be a trailblazer, if you want to help me and the rest of us
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  build this from the inside out, then join us in the inner
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  circle. That's where the real work is
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  going to happen. The links in the description,
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  this movement has started and it starts now.
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  And you can close this video and nothing changes.
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  Or you can take one step, a comment, share a subscription or
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  be a part of something bigger than Parkinson's itself.
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  Don't just watch the movement, be a part of it.
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  Join it, share it, start talking.
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  And here's today's price system with Parkinson's.
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  Movement isn't just about exercise, it's about creating
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  momentum. And when we come together, we
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  can't be ignored anymore. Join me and until next time,
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  keep showing up, keep seeking out and you keep doing life
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  today.