Latest / Living with Parkinson’s | Bryce Perry / The Surprising Gift Parkinson’s Gave Me (You Won’t Believe It)

Transcript

The Surprising Gift Parkinson’s Gave Me (You Won’t Believe It) · 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. If you told me Parkinson's would
• 0:34
  give me the best gift of my life, I'd have called you crazy,
• 0:38
  maybe even recommended that you see a neurologist yourself.
• 0:41
  Seriously, everyone talks about what you lose with Parkinson's.
• 0:44
  The mobility, confidence, independence, and let's be
• 0:47
  honest, the ability to tie your shoes in under 5 minutes.
• 0:51
  But nobody ever warned me that Parkinson's might actually give
• 0:54
  me something that I wouldn't trade for anything.
• 0:56
  Well, today I want to share the biggest surprise this disease
• 1:00
  has ever handed me. Hey everyone, and welcome back
• 1:02
  to the channel. If you're new here, I'm Bryce,
• 1:05
  and this is living with Parkinson's.
• 1:06
  The good, the bad, and the reality.
• 1:08
  Now, this channel is all about telling the truth about
• 1:12
  Parkinson's. No filters, no sugar coating,
• 1:14
  and definitely no pretending that we've got it all together
• 1:16
  100% of the time. Now.
• 1:18
  A huge thank you to my loyal viewers and inner circle
• 1:21
  members, and to everyone who's ever left a comment, sent an
• 1:24
  e-mail, forwarded this off, or watched in the sport group, or
• 1:27
  just watch quietly from the sidelines.
• 1:29
  You're all part of what makes this community so special.
• 1:32
  Now let's rewind to the very start.
• 1:35
  When I was first diagnosed with Parkinson's, all I could think
• 1:38
  about was what I'd lose. My career Gone.
• 1:42
  My ability to travel and do all the things that I loved totally
• 1:45
  at risk. My dignity.
• 1:47
  Some days that even felt questionable too.
• 1:50
  Even simple things like buttoning a shirt suddenly felt
• 1:53
  like an Olympic sport. And trust me, I'm not winning
• 1:55
  any medals. I remember staying up late,
• 1:58
  searching online for hope, reading scary forums, and
• 2:02
  honestly just feeling lost. And that's the thing that nobody
• 2:06
  tells you. It's not just the symptoms, it's
• 2:09
  the loneliness, the silence, and the sense that nobody around you
• 2:12
  really gets it. But here's the plot twist.
• 2:16
  Out of all that loss, something incredible started to grow.
• 2:20
  At first it was tiny, just a few people watching.
• 2:23
  Some of my early videos usually post at midnight when I couldn't
• 2:27
  sleep. You know, honestly, I thought,
• 2:29
  who's ever going to care what I have to say about Parkinson's?
• 2:32
  But then all of a sudden the comments started coming in.
• 2:36
  A question here and an encouragement there.
• 2:38
  And so many people weren't just talking to me, they were talking
• 2:41
  to each other. Total strangers connecting over
• 2:44
  symptoms, advice, and yes, even a little dark humor about shaky
• 2:48
  hands and surprising freezing episodes.
• 2:51
  You know, somewhere along the way, I realized this isn't just
• 2:55
  my story anymore. This is our story.
• 2:59
  This is the greatest gift that Parkinson's has ever gave me.
• 3:05
  It's not just a platform, it's not a YouTube channel, it's not
• 3:07
  a podcast, but a real living, breathing community.
• 3:12
  And every time I post a video and I see people helping each
• 3:16
  other in the comments, my heart, honestly, it just, it does like
• 3:19
  a little happy dance. I've seen people share
• 3:23
  everything from medication tips to recipes for left-handed
• 3:27
  pancakes. Shout out to whoever started
• 3:29
  that one to what do they call it, tonics or tannics?
• 3:32
  Anyway, some of you've even opened up about things you've
• 3:34
  never told your closest friends. And let me tell you, those
• 3:39
  moments are pure gold. You know, one of my favorite
• 3:42
  things is seeing someone comment like, this is the first place
• 3:45
  I've said out loud that I have Parkinson's.
• 3:48
  That's powerful. That's why I do this, because
• 3:52
  when I was newly diagnosed, I didn't know where to turn.
• 3:55
  I didn't know who to talk to, you know?
• 3:58
  Now, as more and more people are being diagnosed every day, I can
• 4:02
  honestly say that you and me and all of us, we're actually
• 4:05
  building the landing place that I always wished existed for me
• 4:09
  when I was diagnosed. Look, there's a place for
• 4:13
  textbooks and medical pamphlets, but nothing can replace the
• 4:17
  lived experience of real people. Real people are you and me.
• 4:21
  The best advice I ever got about dealing with Parkinson's didn't
• 4:24
  come from a neurologist. It came from one of my friends
• 4:28
  and one of those new friends, one of those new Parkinson's
• 4:31
  friends, you know, they said the trick isn't to hide your
• 4:35
  symptoms, it's to find your people.
• 4:38
  And you know what? They were absolutely right.
• 4:42
  What started out as one person sharing their story has become a
• 4:46
  movement. I've watched casual viewers
• 4:48
  become regulars, subscribers become inner circle members, and
• 4:52
  strangers become friends, sometimes even life lines for
• 4:55
  each other. Every honest story, every
• 4:59
  comment, every awkward question, those are all bricks Building
• 5:02
  this foundation. You're literally helping create
• 5:05
  the resource that you wish you had for the newly diagnosed or
• 5:10
  for care partners, for people or or for people who are just
• 5:12
  having a tough day. This space is proof that you're
• 5:15
  not alone and that you never have to be.
• 5:18
  Again. I want to share a quick personal
• 5:22
  moment. Not long ago, I had a rough
• 5:25
  morning. I'll be a rough morning.
• 5:27
  You know the kind. Nothing seems to work and
• 5:29
  motivation is in the basement and every symptom feels bigger
• 5:32
  than it should. But I logged on and I read a
• 5:36
  comment from someone who was having an even tougher week than
• 5:38
  me, and I saw a half a dozen replies from other viewers
• 5:44
  offering real advice and some encouragement and even a joke or
• 5:47
  two. It's light in the mood.
• 5:50
  I was supposed to be the one helping, but in that moment, you
• 5:53
  all helped me. And that's when it hit me.
• 5:56
  This community is bigger than any one person, and it works
• 6:00
  both ways. We're not just here telling our
• 6:03
  stories, we're making change happen.
• 6:06
  I see people organizing meetups, starting projects, raising
• 6:09
  awareness, and even supporting research in their local
• 6:11
  communities, all because of connections that they made right
• 6:15
  here. I've had doctors reach out to me
• 6:19
  wanting to learn from our lived experiences, not just their
• 6:21
  textbooks. We're showing the world what
• 6:24
  Parkinson's really looks like. Messy, honest, funny,
• 6:28
  frustrating, but always real. And I just want to say thank
• 6:33
  you. Thank you to every person who's
• 6:36
  ever hit subscribe, ever left a comment, ever shared a struggle
• 6:40
  or just listened. You're the reason why this is
• 6:43
  more than a channel. You're the reason I get up and
• 6:46
  get out of bed and keep making these episodes, these podcasts
• 6:49
  and these videos, even on the tough days.
• 6:54
  And if you're looking for a deeper connection or just a
• 6:56
  confidential place to be yourself and get support, the
• 6:59
  inner circles always open. It's not a Facebook group or
• 7:03
  Zoom call. It's a private confidential
• 7:05
  space where we really get into the good, the bad, and the weird
• 7:08
  stuff that nobody else wants to talk about.
• 7:11
  And the link is in the description below if you're
• 7:12
  curious or if you want to check it out.
• 7:15
  And now I want to hear from you. What's your one thing that
• 7:19
  Parkinson's is giving you, even if it surprised you?
• 7:23
  Was it a friendship, a lesson, a little more patience, or the
• 7:26
  world's weirdest party trick? Drop your answer in the comments
• 7:29
  below, and if you see someone's story that resonates, give it a
• 7:34
  reply. Let's keep building this
• 7:36
  movement, one story, one laugh, and one new friend at a time,
• 7:41
  And I'll leave you with, since you made it this far, this price
• 7:44
  isn't with Parkinson's, sometimes the best gifts come
• 7:48
  wrapped in sandpaper. They're not shiny, they're not
• 7:51
  easy, and they're definitely not on anyone's wish list, but
• 7:55
  sometimes they end up changing the your life in ways that you
• 7:58
  never expected. Thank you so much for watching.
• 8:05
  I'm Bryce and I truly am grateful for every single one of
• 8:07
  you. And if this video made you feel
• 8:11
  a little less alone, hit like subscriber or share it with
• 8:15
  somebody who could use a little hope today.
• 8:19
  And remember, keep showing up, keep sharing, and keep doing
• 8:23
  life today and every day.