Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s and the Fear of the Future: How I Cope With the Unknown

Transcript

Parkinson’s and the Fear of the Future: How I Cope With the Unknown · 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. You know, it's not just the
• 0:34
  symptoms that scare me, it's the unknown, the what ifs, the
• 0:39
  progression, the fear of losing more than I already have.
• 0:44
  We'll stick around because by the end, I'm going to share how
• 0:47
  I stopped letting fear make all my decisions.
• 1:00
  All right, well, welcome to the channel.
• 1:02
  My name is Bryce. If it's your first time here and
• 1:04
  if it's not, thank you for coming back.
• 1:06
  And if you're new here, this is living with Parkinson's, the
• 1:10
  good, the bad and the reality. And this podcast is all about
• 1:12
  strength, hope and support for anyone living with Parkinson's
• 1:15
  or loving someone who does. I keep it real.
• 1:20
  The good, the bad and the stuff that nobody talks about.
• 1:24
  South. Today's episode, we're going to
• 1:26
  talk about Parkinson's and the fear of the future.
• 1:28
  And let's be honest, this one hits really close to home, OK?
• 1:33
  Like, when I was first diagnosed, the scariest part
• 1:36
  wasn't the symptoms I had. It was the symptoms that I might
• 1:39
  have. You know, would I be able to
• 1:42
  walk in five years? Would I lose my voice, my
• 1:45
  independence, my career? Would I become a burden?
• 1:48
  No one gives you a road map. And so your mind starts writing
• 1:52
  its own, like its own road map and it's filled with worst case
• 1:56
  scenarios. Do you do that?
• 1:58
  Do you have like the worst case scenarios, the things that like
• 2:02
  what if? And it's like the, the, the, the
• 2:03
  biggest, baddest, craziest thing could ever happen.
• 2:07
  That's where our mind goes. And that's what exactly where it
• 2:10
  goes, especially in these moments of, of the unknown.
• 2:12
  It is absolutely terrifying, to be honest.
• 2:15
  But again, don't forget near the end of the episode, I'm going to
• 2:18
  share the shift that helped me stop spiraling into those
• 2:21
  craziness and the craziness of what it might be.
• 2:24
  OK, at first, when I was diagnosed, at first I was
• 2:29
  overwhelmed by the information, right?
• 2:31
  Google became my worst enemy and my late night but had my late
• 2:35
  night obsession. You know how many can say you
• 2:38
  know me too, right? Google is my late night
• 2:42
  exception, but it can became it became my enemy.
• 2:44
  I read every possible outcome and somehow I would convinced
• 2:48
  myself that they'd all happened and they'd all happened fast.
• 2:52
  But here's the truth. Fear grows when we feed it with
• 2:56
  assumptions. And I was feeding mine three
• 2:59
  meals a day, morning, noon and night.
• 3:01
  I'd wake up, I'd reach my phone and I'd start reading on
• 3:04
  Parkinson's, reading stories. I'm in chat groups and I'm
• 3:08
  listening to everybody's worst case, the worst, worst, worst
• 3:10
  case symptoms, the worst case of everything.
• 3:13
  And I had to stop feeding that. I was feeding it three times a
• 3:17
  day. I like that.
• 3:18
  It just popped my head. I like when I like myself.
• 3:20
  But anyway, there's a fine line between planning and obsessing.
• 3:25
  And I've crossed it. I've crossed it way, way more
• 3:27
  times than I can count. See planning smart, having a
• 3:31
  care team. I will taking care of loved
• 3:33
  ones. That's wise.
• 3:35
  But when your entire life becomes a plan to avoid the
• 3:38
  worst, you stop living. You stop living the best of
• 3:42
  what's still there. OK, I know you want me to say
• 3:46
  that again, right? When you're when your entire
• 3:49
  life becomes a plan to avoid the worst, you stop living the best
• 3:56
  of what's still here and you totally miss it.
• 3:59
  And honestly, some of the scariest things that I ever
• 4:03
  imagined they didn't happen and some of the hardest things that
• 4:07
  did happen, man, you know what? I handled them better than I
• 4:10
  thought I would. And that's what I want to remind
• 4:14
  you today. And again, I hope I'm not alone
• 4:16
  in this, you know, and I know I'm not.
• 4:19
  So 15 years in you think about this.
• 4:21
  I, I, I, I kind of lived it. No, I think I, I spoke in the
• 4:24
  son of a podcast before. And if you haven't watched the,
• 4:26
  the podcast, go back and start because I kind of like, I don't
• 4:29
  want to keep filling it in. I, I kind of feel in the blanks
• 4:31
  as we go. But I'd love you to catch up
• 4:33
  because we're going to some places here that we're going to
• 4:35
  touch on things that, you know, a lot of people talk about,
• 4:38
  right? Like, what is that feeling?
• 4:40
  What are we doing? We talk a lot about exercise and
• 4:43
  exercise is a fantastic exercise is needed.
• 4:46
  But there's so much game up here, right?
• 4:48
  And in here. And we got to make sure that
• 4:51
  that we're we're doing both, right?
• 4:53
  We have to exercise our brain and exercise our our body and
• 4:56
  exercise our brain, exercise our mind and exercise it on the
• 4:59
  proper things. OK, That's why we're doing this.
• 5:03
  And again, in those 15 years, the things that were really
• 5:05
  difficult, I'm like, man, if that ever this if this a ever
• 5:08
  happens, I don't know how I'm going to handle it.
• 5:11
  It's going to be bad. I've never been good at like I'm
• 5:12
  just not good with these things and they did OK, I'm here today.
• 5:16
  I'm here today. Matter of fact, if you're
• 5:17
  watching this right now or listening to this, no matter
• 5:21
  when it is, you're here, you got past yesterday and you know what
• 5:27
  they say, right? Today is the tomorrow that you
• 5:31
  were worried about yesterday. OK, OK, I'll say it again.
• 5:35
  Today is the is the tomorrow that you were worried about
• 5:38
  yesterday. All right.
• 5:40
  So anyway, join me in the comments.
• 5:42
  Is there, you know, is there things that you didn't think
• 5:45
  that you'd be able to handle? Whether you, you know, thought
• 5:47
  that you you were whether you're someone who's diagnosed with
• 5:50
  Parkinson's and you're thinking, man, if this happens to me and,
• 5:53
  you know, next year or next month or whatever it might be, I
• 5:56
  don't know how I'm going to handle it.
• 5:57
  But yet you're handling it now. I'd love to know what that is
• 6:00
  not just for me. I mean, let's, let's, let's have
• 6:01
  a conversation. And the reality is if when
• 6:04
  you're honest and vulnerable, you know you're going to help
• 6:07
  somebody else because somebody else is going to read in the
• 6:09
  comments. And a lot of people read it.
• 6:10
  And trust me, I read every comment.
• 6:12
  Just so everybody knows, I read every single comment and I try
• 6:14
  to respond to every single one. And I think it's important.
• 6:19
  And what's happening is you'll notice people read the comments,
• 6:23
  right? So they, they read what you said
• 6:25
  and it's going to maybe register with them.
• 6:27
  They're going, Oh my gosh, I'm, I'm worried about that right
• 6:29
  now. And and it's going to.
• 6:32
  Stay with us, we'll be. Right back.
• 7:16
  Them so do that join me in the comments.
• 7:18
  Let's do this. OK, so again, some of the
• 7:22
  hardest things that that that that I was worried about they
• 7:25
  didn't happen or the OR I handled them better.
• 7:27
  And that again, that's what I want to talk about.
• 7:29
  That's what I want to remind you.
• 7:30
  You know, there came a point where I had to make a choice,
• 7:34
  right? I could either live scared of
• 7:36
  the future, right? Or live now while I still could.
• 7:40
  So guess what I did? I started practicing presence,
• 7:44
  not perfection, just presence. I stopped fast forwarding my
• 7:48
  life like it was a movie that I didn't want to watch, right?
• 7:51
  And I started noticing moments that I would have missed a step
• 7:56
  back. I started laughing at a joke.
• 7:58
  I started feeling the sun on my face.
• 8:00
  I started taking a deep breath without panic.
• 8:04
  And guess what? That's not denial.
• 8:06
  What that is is that's choosing joy over fear.
• 8:10
  And that's a choice that you have to make.
• 8:13
  You know, I call this doing life today.
• 8:16
  And I, I came to you one day because I'm like, I'm not going
• 8:18
  to let this life pass me by. I want to live my life.
• 8:23
  And you know what, I want to live it today.
• 8:26
  I don't want to. Are you that type of person that
• 8:27
  might say, and you know, in the comments, you know, hit the like
• 8:30
  button, share this with someone who needs it.
• 8:31
  I'm telling you this is powerful message.
• 8:32
  But are you that type of person that, that, that just wants to
• 8:36
  just kind of avoid it, right? Avoid thinking about it because
• 8:39
  maybe it won't happen because that's me, right?
• 8:41
  That's me and how many of you would say this?
• 8:45
  That's what I was, that's where I was going.
• 8:46
  I kind of lost my track there. Hopefully you stay with me here
• 8:48
  and I hopefully you're probably used to this by now.
• 8:49
  This is just me. This is real raw, right?
• 8:52
  I just, this is just me and my partners and I've had a long day
• 8:56
  today. I've done, you know, it's
• 8:57
  Parkinson's awareness month started today, April 1st, and I
• 9:00
  did ATV interview, a radio interview.
• 9:02
  And so I'm just having a long day and I've talked a lot, but
• 9:05
  nothing more that I wanted to do today was to get this message
• 9:08
  down and and recorded so that I could give.
• 9:21
  But anyway, are you that person that says, you know what, I'm
• 9:23
  going to do this, this and this and then I'm going to start
• 9:26
  living, or I'm going to do this, this and this and then I'll be
• 9:28
  happy. Or if this happens and this
• 9:30
  happens, then I'll be happy. You know, those things don't
• 9:32
  happen. You know what?
• 9:33
  And if you had, you make conditions on yourself.
• 9:35
  The condition is, you know, when I get this old or when this
• 9:38
  happens or when this happens, I'm going to change or I'm going
• 9:40
  to be change my mindset or I'm going to be happy.
• 9:42
  And the reality is when you get there, you add on more and
• 9:45
  things just, life keeps growing, right?
• 9:47
  Life just keeps on coming. It's that perspective shift,
• 9:51
  right? It changed everything for me,
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  OK. And this is what I'd helped me
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  the most. This is the thing that gave me
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  the most hope. And here it is.
• 9:59
  Here's the shift. I stopped asking What if it gets
• 10:02
  worse? And I started asking, what if I
• 10:06
  get stronger? What if I learned to adapt?
• 10:10
  What if I'm more resilient than I think?
• 10:12
  What if the support I need shows up right when I need it?
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  The future might not be easy, but it also might be full of
• 10:21
  things that I can't even imagine yet.
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  Good things, unexpected things. Moments worth living for.
• 10:30
  And that shift didn't cure my fear, but it stopped letting
• 10:34
  fear make all my decisions. And if you think about it, that
• 10:39
  could be you today, whether you're someone with Parkinson's
• 10:41
  or whether you're a caregiver and you're so fearful of the
• 10:44
  next. What's going to happen next?
• 10:45
  What's going to happen here? How are we going to handle this?
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  Who's going to be in our life? I don't have support, I don't
• 10:50
  have this, I don't have that. All of that fear was me.
• 10:55
  It was was the fear was making the decisions for you.
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  It was making the decisions for you.
• 11:02
  OK, So what is your question? Like, do you hear what my were?
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  What if I get stronger, right? Like that's why I started asking
• 11:09
  what if I learned to adapt? OK.
• 11:12
  And if you think about it, that's the things I was worried
• 11:14
  about. My worry was I'm what if I'm
• 11:18
  going to get weaker? What if I get weaker?
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  What if I can't do something? And I said of that, I said, what
• 11:22
  if I get stronger? OK, what if I said I'll never,
• 11:25
  What if I never ever learn how to, to, to, to do things
• 11:28
  differently? What if I never learned how to
• 11:29
  comb my hair with my left hand, with my right hand shaking too
• 11:31
  much? What if I can't do it?
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  Instead? I asked what?
• 11:35
  What if I learned to adapt, right?
• 11:39
  I was saying I'm too weak. I can't do this.
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  I'm not built for this. This is not my life.
• 11:43
  I can't do this. Instead, what if I'm more
• 11:46
  resilient than I think? I wasn't through a divorce.
• 11:52
  OK, ten years in. What if I never find anybody?
• 11:56
  How am I going to handle this on my own?
• 11:58
  What if I how? What kind of help am I going to
• 12:01
  have? I started asking.
• 12:02
  I started saying stuff. What if I find the most precious
• 12:05
  person in the entire world that loves me for me?
• 12:09
  What if and what if that that happened?
• 12:13
  OK, again, the future might not be easy, but it's also full of
• 12:17
  things that you can't imagine yet.
• 12:20
  Good things for you, unexpected things for you, moments worth
• 12:23
  living for you. OK, that's what happens.
• 12:30
  And you have to make that choice.
• 12:32
  Nobody can do it for you. It's your choice.
• 12:34
  It's your choice, OK? Just stop letting that fear make
• 12:39
  your decisions. And in the comments, what are
• 12:42
  your things? What is the one thing that
• 12:43
  you're fearful about? Put it write in the comment and
• 12:45
  then write the next thing, right?
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  What if this what if blank happens to me?
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  Or what if this blah, blah, blah happens happens to me?
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  But then right beside it, I want you to write the other way.
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  What if I you know, what if I learned to adapt?
• 12:58
  I don't What if I never ever, ever, ever I'm going to be able
• 13:01
  to set to get the grips of this Parkinson's.
• 13:04
  What if I learned how to adapt? Do that.
• 13:07
  It'll help you. It's something you just throw it
• 13:09
  out there. It helps you and it's going to
• 13:10
  help somebody who's just passing by and has a look in the
• 13:14
  comments. So let's help.
• 13:16
  Let me, let's help each other. That's that's what it's all
• 13:17
  about. And if you've been afraid of
• 13:20
  those lies, I get it. I'm sorry.
• 13:23
  Those lies, my God, if you've been afraid of what lies ahead,
• 13:26
  that's what I meant to say. If you've been afraid of what
• 13:28
  lies ahead, OK, I get it. You're not weak, you're not
• 13:33
  broken. You're human.
• 13:35
  But let fear take the don't let fear take the wheel.
• 13:39
  You still got life to live, love to give and a future that will
• 13:44
  help a future that you get to help shape one step at a time.
• 13:51
  Well, I hope this episode helped.
• 13:54
  And you know it's one of these ones that you might want to save
• 13:56
  this, right? You might want to share this,
• 13:58
  but you might want to save it because fear trickles back in.
• 14:03
  And when you start feeling those doubts again and you start
• 14:05
  asking those questions again, I want you to remember this and I
• 14:08
  want you to come back and re watch it again, right?
• 14:10
  Do that exercise, save it and do it.
• 14:13
  OK. I love it.
• 14:16
  I love you. Share this with somebody who you
• 14:19
  think might be stuck in their head right now because I'm I've
• 14:21
  got a bunch. I'm going to share with a bunch
• 14:23
  of people I know and subscribe for more episodes that keep it
• 14:26
  real. You're not alone.
• 14:28
  You never have been. This is living with Parkinson's,
• 14:31
  the good, the bad and rally, and we're doing this together.
• 14:43
  Parkinson's may be part of your life, but it doesn't get to
• 14:46
  define it. Thanks for listening to Living
• 14:48
  with Parkinson's, the good, the bad, and the reality.
• 14:53
  If this episode moved you, helped you, or reminded you
• 14:56
  you're not alone. Share it with someone who needs
• 14:59
  to hear it. Want to go deeper?
• 15:01
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 15:05
  community, and a Direct Line to Bryce.
• 15:07
  You'll find the link in the show notes.
• 15:09
  Until next time, keep showing up and keep doing life today.