Latest / Living with Parkinson’s | Bryce Perry / The Shocking Reality of Living with Parkinson’s Long-Term

Transcript

The Shocking Reality of Living with Parkinson’s Long-Term · Living with Parkinson’s | Bryce Perry

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  They told him he had five good years left.
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  That was 15 years ago. He's still standing, still
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  speaking, still living. This is living with Parkinson's,
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  The good, the bad, and the reality.
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  A podcast about what happens when life throws you something
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  incurable and you fight back anyway.
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  Hosted by Bryce Perry, diagnosed at 4015.
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  Years into the battle, This is the truth behind the tremor.
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  Let's begin. I'll never forget the first time
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  I looked in the mirror and I didn't recognize my own face.
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  Has that ever happened to you? Has Parkinson's ever made you
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  feel like a stranger to yourself or blind sighted you with a new
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  symptom that you never saw coming?
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  If you've ever felt your identity slipping away, well,
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  you're not alone. Stay with me because today I'm
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  going to share the real truth about living with Parkinson's
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  for the long haul. The stuff that nobody tells you
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  when you're diagnosed and the stories that you don't get in
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  the brochure. And trust me, there's some
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  shocks nobody warns you about. Hey, I'm Bryce and welcome to
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  living with Parkinson's, the good, the bad, and the reality.
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  And if you're new here, I'm so glad you found us on this
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  channel. It's not about sugar coating.
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  It's about surviving and thriving with a little bit of
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  humor and a lot of heart. And if you want real stories,
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  not just the highlights and subscribe and you're the moment
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  that Parkinson's will surprise you or maybe even the craziest
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  thing it's ever thrown your way. You know, when I was first
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  diagnosed about 15 years ago, I had this timeline in my head,
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  right? I pictured a slow, steady to
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  slope, a gentle decline that I can prepare for.
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  You know, by your five, I'll be here, and by your 10, I'll be
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  there and so on. And, well, the first shock,
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  Parkinson's is less like a slope and more like a roller coaster
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  operated by like a deprived clown.
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  And just when you think you got a handle on it, like, boom, new
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  symptoms, new challenges, new rules.
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  You know, I remember about my about three years after my
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  diagnosis, I, you know, I'd gone from, like, going for like, long
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  walks to barely making it down the block, right?
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  And I thought to myself, OK, yeah, I guess this is my new
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  normal, right? And then out of nowhere, I
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  signed up for super walk in Canada here.
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  And I went walking and it, you know, it wasn't graceful.
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  You know, my left, my, my left leg dragged my, I sweated
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  buckets and I probably looked like I was auditioning for the
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  world's slowest relay team. But I, I finished, I crossed the
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  finish line. And it reminded me I still have
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  this fight. I'm still in the fight.
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  So when things suddenly change, you need to try to let go of the
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  forever thinking, right? Remind yourself, this is my
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  right now, not my forever, right?
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  It's this is my right now, not my forever.
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  Parkinson's can take, but sometimes it gives you back more
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  grit than you thought you had. It really does.
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  So let's get real for a second. Everyone with Parkinson's
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  worries about the future, right? How fast will things progress?
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  What will it mean for your independence?
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  What was it going to mean for your family?
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  Was it going to mean for your dignity?
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  If you've ever had those late night Google sessions, and to be
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  honest, I have, or the 3:00 AM doctor Google anxiety spirals,
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  then you're not alone here. You know, when Carter and I got
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  married, I wondered if she truly knew what she was signing up
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  for. Some days, honestly, I worry
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  about about her more about her than I do myself.
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  And but she's taught me that love and humor don't just
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  survive. They thrive even on the hardest
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  days. You know, like, like the time I
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  froze in the middle of our kitchen dance party, right?
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  Music's playing, me stuck like a statue.
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  And she just wrapped her arms around me and she just turned it
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  into a slow dance. I was frustrated, but I was also
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  grateful. And you'd be surprised.
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  What And who holds you up when things get tough.
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  So if you're in a relationship, you know, it's best to talk
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  about your fears openly. You know, don't forget to laugh
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  and don't forget to laugh together.
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  And when things get heavy, you know, steal a dance in the
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  kitchen, even if you're only swaying, trust me, it goes a
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  long way and will make you feel better in the end.
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  And here's here's a pricism for today With Parkinson's, the
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  future is a wild card, but so is your capacity to adapt and to
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  find new joys, even when the old ones slip away.
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  Let me ask you this. What's the most shocking or
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  unexpected part of your Parkinson's journey?
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  And if you're willing, share it in the comments because someone
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  out there is facing it right now for the first time and your
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  story could be the lifelong that lifeline that they need.
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  And if you want more support, more real talk, more, more
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  community, hit subscribe and join our little family here.
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  It's amazing. People here are amazing.
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  The comments are amazing. I love, I love, love, love, love
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  this community. So here's another thing.
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  My symptoms haven't gotten worse, right?
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  They've gotten creative, you know, one year was tremoring,
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  then it was freezing, then came, now it's coming to facial
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  masking. And the day that I saw this
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  group photo and I realized my smile was gone, that hit me like
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  a ton of bricks, right? I didn't just lose an
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  expression. I lost a, a piece of how I
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  connected with the world. And it took me a while, a long
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  while. But those moments are forcing me
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  to reach out to others who get it, like you.
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  And I've learned it's OK to grieve and it's OK to ask for
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  help and it's OK to miss the old you.
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  It really is, you know, someone wrote wrote me one time someone
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  wrote me, you know, from the channel and they said I used to
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  hide my symptoms. But when I finally talked about
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  them, my family became my biggest cheerleaders.
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  If you ever found support in an unexpected place, you'll find
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  it. But you won't find it unless you
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  talk about it. OK, you won't.
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  Here's a tip. Document changes, right?
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  Not just for you, sorry. Document your changes.
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  Not just for your doctor, but for yourself.
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  I talk a lot about this and you're probably getting sick and
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  tired of me saying this, but you have to start.
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  Generally you have to write things down.
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  And if you don't like writing them, speak them into your notes
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  app on your phone or or or or turn anything on and just record
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  yourself. But I always tell you to keep
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  notes and a little least like journals for your doctor, right?
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  Any changes like document them right?
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  Here is a change today. And then what were what led to
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  that change? What led up?
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  How did you sleep, what you ate right?
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  So how did, how did you take your meds?
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  How did, how, how are you? How did you take your meds
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  today? How did you sleep?
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  What you eat, right, little, little notes.
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  And then what happened, right? But I always tell you to keep
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  that for your for your doctor, But I want you to also think
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  about it for yourself. You know, keeping that a
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  journal, right? Or these few notes on your
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  phone. That's what helps you spot
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  patterns, right? And it's a reminder that every
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  phase is temporary. See, there's the other thing
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  too. If you write them down and spot
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  the changes, there's things to look back and say, huh, look at
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  that. Look at what was happening that
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  week, but it's not happening anymore this week.
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  So then you can start looking at things as a net right now thing
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  rather than the rest of my life thing.
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  OK. And let yourself feel
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  everything. Let me say that again.
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  Let yourself feel everything. Long term Parkinson's isn't just
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  physical, it's mental. It's mental and it's emotional.
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  It's a marathon and it's not a Sprint.
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  And there are days that I feel angry, absolutely.
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  And there's days I feel proud. And there's days I've completely
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  broken down in the car after a rough doctor's appointment.
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  You know, one day I was had a tough appointment, right where
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  nothing seemed to go right. And I sat in my parked car and I
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  just let the tears come. And I remember the stranger was
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  walking by and knocked on my window and handed me a tissue.
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  Didn't say a word, just gave me a look that kind of like said
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  like, Hey, I see you. And you know, sometimes it's
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  that smallest kindness that pulls it just pulls you back to
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  hope. And it just, it did something to
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  me in that moment. I was, I know I can't describe
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  it, but it was just, I felt different.
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  And I was like, oh, you know what?
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  And anyway, that person knows who they were.
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  I didn't know them. It was just random.
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  But it, it, it was incredible. It was incredible.
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  So let yourself feel and let remember, I said, let yourself
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  feel everything, anger, grief, joy, relief, right?
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  And if you need to cry, cry. And if you need to laugh at
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  yourself, do it. Your emotions aren't wrong,
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  they're just real. You know, over the years, over
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  the years, like, I don't know, just people, people have helped,
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  right? Helped me adapt and find meaning
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  in places that I didn't expect that this community, this
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  channel, this podcast is helping me.
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  You know, it's just, I just did never expected any of this,
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  right? But it's helping me find meaning
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  and it's, it's crazy. And you know, I've gotten
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  advice, I've gotten laughter and honestly, a sense of family that
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  I wouldn't trade for anything. And so it's amazing.
• 9:02
  How about this? What's the best piece of advice
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  that or support that you've received?
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  You know, let's fill up the comments with wisdom and
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  encouragement for each other. That would be awesome, right?
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  And if you haven't yet, if you haven't yet and you don't have
• 9:14
  community, there's community here.
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  But you can also join the support group, right?
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  There's local support groups in your area, wherever you are
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  around the world, I promise you, there's probably a support group
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  there that you can join either virtually or in person.
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  And if there's not one in your area or not one that you're
• 9:28
  comfortable with or not, check with my inner circle.
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  It's like a giant support group. So, well, it's not giant, but
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  it's like ours, my support group.
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  And you're welcome to be part of it.
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  And you can see the link in the description below if you'd want,
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  but it's really important to have community.
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  Really, really important to have community.
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  And I'll say that over and over again.
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  OK, anyway, if you found some value today, subscribe for more
• 9:49
  honest talk and hope and check out that inner circle, right?
• 9:52
  It's deep community, it's live chats, it's bonus content.
• 9:54
  And thank you for letting me be part of your journey, no matter
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  where you're at. And thank you for being part of
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  mine. You know, do you realize that
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  I'm you're, I'm letting you into my life and you're letting me
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  into yours. And we're doing this together.
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  So stay strong, stay honest and keep doing life one day, one
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  surprise and one story at a time.
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  And here I'm going to leave you with this with Parkinson's, your
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  identity might change, but your value never does.
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  And remember, if you're getting symptoms, start creative.
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  Just tell them nice try Parkinson's.
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  I'm still running the show. There was some bonus stuff just
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  for sticking around till the end.
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  Love you guys, talk to you soon. Parkinson's may be part of your
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  life, but it doesn't get to define it.
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  Thanks for listening to Living with Parkinson's, the good, the
• 10:44
  bad, and the reality. If this episode moved you,
• 10:48
  helped you, or reminded you you're not alone.
• 10:51
  Share it with someone who needs to hear it.
• 10:53
  Want to go deeper? The Inner Circle is waiting.
• 10:56
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 11:00
  Bryce. You'll find the link in the show
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  notes. Until next time, keep showing up
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  and keep doing life today.