Latest / Living with Parkinson’s | Bryce Perry / Grieving the Life You Thought You’d Have

Transcript

Grieving the Life You Thought You’d Have · 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 what they don't tell
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  you at time of diagnosis? It's that you're going to grieve
• 0:38
  this life that you're still living.
• 0:40
  But that's exactly what Parkinson's does.
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  And today I'm going to share the truth that I wish I would have
• 0:44
  heard this way back when I first got diagnosed and stick around
• 0:47
  to the end because I'm going to share the one thing that helped
• 0:50
  me more move forward when I thought that I couldn't.
• 1:03
  All right, well, welcome to the channel.
• 1:05
  My name is Bryce. I want to thank all my loyal
• 1:07
  viewers for coming back and listeners for coming back.
• 1:10
  You know, we've just exploded here and I couldn't be happier.
• 1:12
  This is just a makes my heart jump and excited.
• 1:15
  So if you're new here, my name is Bryce and this is Life in
• 1:17
  Motion, the Parkinson's podcast. So then this channel, this
• 1:21
  podcast, it's all about providing strength, hope and
• 1:23
  support to individuals living with Parkinson's disease and
• 1:26
  their caregivers. I share motivational stories,
• 1:29
  tips and insights to help you navigate life with Parkinson's.
• 1:32
  So if you're looking for this type of content, make sure that
• 1:34
  you subscribe because today this is going to be a good one.
• 1:39
  It's. Grieving the life.
• 1:41
  You thought that you'd have OK. Grieving the life you thought
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  you'd have. And again, at the end, I'm going
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  to share something that just might help you on those really
• 1:50
  hard days. OK, so as you know, when people
• 1:54
  hear the word grief, they usually think of death, right?
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  But there's another kind of grief, and that one we don't
• 2:00
  talk about enough. And it's the grief.
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  Of a life you thought that you'd have.
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  The future. The future you were planning,
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  the version of yourself that you expect it to be.
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  And with Parkinson's, that grief doesn't hit.
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  It doesn't hit all at once, does it?
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  It creeps in. Little things, little things
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  start to change. You start losing energy,
• 2:20
  mobility, and then a little bit of independence.
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  And that's when Olsen, you start to realize that you're just that
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  you're just not adjusting to this new normal.
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  You're actually starting to grieve something.
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  And that hits hard. So if you're struggling, right,
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  you're struggling trying to come to grips with this diagnosis,
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  you just can't put it all together, right?
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  You're actually grieving, and you're grieving the life that
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  you thought that you were going to have.
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  OK, the one that you thought the.
• 2:48
  Plans you had the future that you were having, right?
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  This disease, this Parkinson's comes in, it just starts to or
• 2:54
  feels like it's going to start robbing it, OK?
• 2:58
  Robbing it. And I'm going to tell you I'm
• 3:00
  going to help you. I'm going to help you today, OK?
• 3:04
  So before Parkinson's, I had plans, right?
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  I had ideas about life, what life was going to look like,
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  what work was going to look like, what my travel, the travel
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  I was going to do with my family, how I was going to be
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  with my family. And even like, you know, I had
• 3:15
  dreams or thoughts about how I was going to grow old.
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  I mean, I didn't want to grow old.
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  I still don't want to grow old. I want to be young forever.
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  Don't we all. Come on, come on, somebody.
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  But you know what we think about it, right?
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  But when Parkinson's shows up, it doesn't just affect your
• 3:29
  body. It starts to mess with your
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  identity. That's huge.
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  You know, my identity. Oops, sorry.
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  My identity at the time was probably a lot wrapped in my
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  career, 1st and family, you know, my career, my family.
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  So I had to give up parts of my career, which meant I was giving
• 3:46
  up part of my identity, part of what I was living for.
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  I had to shift my roles in relationships.
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  You know, I had to be a dad differently, I had to be a
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  husband differently, I had to be a son differently, I know.
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  And I had to let go of that version of myself that I really
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  liked. OK, I had to let go of that one.
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  That version I really liked. And what version is that?
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  You asked? Well, thanks for asking because
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  I'll tell you the one that could go non-stop, I never missed a
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  beat. I could go non-stop.
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  I could go 100 miles a minute and not and I could just, I
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  could multitask and do I was just on fire, right?
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  It was like all gas, no brakes. And I had to start grieving that
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  I couldn't do that anymore. You know, I used to joke that I
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  have ADHD and I think I probably do.
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  I'm not sure, but I probably do. But I could literally go into a
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  restaurant and I could be having lunch with you and I could be
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  having lunch and and we can have this great conversation.
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  At the same time, I had this innate ability to hear what was
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  going around me or going on around me.
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  I could tell what they were talking about next to, you know,
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  next to the table over here and what was going on over there.
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  And, you know, I'd probably stop and say, Oh my gosh, they're
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  getting divorced over here. And he only smokes this guy.
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  He's doing something over here at work that he probably
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  shouldn't be doing. And and yet I could still be
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  focused on what you were saying. And I don't know, maybe is that
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  weird? I mean, it sounds weird.
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  I'm saying out loud. And if it's not weird and you
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  had this superpower, let me know.
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  But obviously I lost that. Multitasking is not something
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  that goes well with Parkinson's, not something that works very
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  good with Parkinson's. It doesn't work.
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  Let's just put it that way. You can't.
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  It is almost impossible to multitask with Parkinson's.
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  So it's so it's weird, but because on the outside, like
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  you're saying, you know, you look great, you look normal,
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  everything's fine. Why are you changing?
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  Nothing's happening here. Nothing's going on.
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  But on the inside, I was saying goodbye to a version of me that
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  felt like it was just slipping away.
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  And if I'm being honest, that probably hurt more than any
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  stiffness or tremors or my toes curling up.
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  It was tough. It was really tough to to kind
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  of walk away from that identity because it's, there's so much
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  fear involved in that fear of what is it going to look like?
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  What is it going to be? You know, how bad is it going to
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  get? How fast is it going to get?
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  And so those things were just starting to consume and consume
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  and, and you just have to start all of a sudden realizing that,
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  right? Do you feel that way?
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  And like, am I, is that making sense?
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  Have you felt that way in the past?
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  And have you gotten over it, Which is great.
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  I hope you did. But again, stay tuned to the
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  end. Stay with me here because I'm
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  going to share this mindset, mindset shift at the end that
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  changed it all for me. OK?
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  That changed it all, OK, Because here's the wild part.
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  Letting go made space for something new, right?
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  You don't think of it that way. You think I'm letting go.
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  I'm I'm letting go of these things.
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  It'll never be the same. But what I didn't realize is
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  when I let go of something, it opened up for something, right
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  when I stopped chasing what I used to be and I started
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  discovering what still could be. OK, let me say that again.
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  I stopped chasing what used to be and I started discovering
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  what could still be. I began to share my story.
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  I started connecting with other people living with Parkinson's,
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  and I started to realize I still have a purpose and I still have
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  a voice like this podcast. This wasn't part of my original
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  plan, but it's been now become like one of the most meaningful
• 7:07
  things that I've ever done. I love it and I love connecting.
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  I love building community and I love hanging out with you in the
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  comments and, and, and I love that I'm doing something and
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  maybe helping in a way, any way I possibly can.
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  Now important thing to know, the grief doesn't end.
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  It just changes shape. But so do we.
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  Now I don't want to sugarcoat anything.
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  Parkinson's is hard, OK? I I, I, I make fun, I make
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  jokes, I laugh about it. I do those motivational minutes
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  every morning or try every morning.
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  I apologize. I've missed a couple lately, but
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  it's been you know, I can Parkinson's, right?
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  Anyway, but just because I'm happy, not happy just because
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  I'm happy. What am I telling you?
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  I am happy just because I'm happy, but because I'm excited
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  because I'm not looking down at the stuff that's bothering me,
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  not looking right now, that my back is absolutely killing me
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  right now. And it's just one of those
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  things I'm having one of those days.
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  OK, So I'm not trying to sugarcoat anything.
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  And when I say when I talk about mindset, when I talk about like
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  how you're going to perceive something or how you should be
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  thinking of something, that does not by any means now I want you
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  to really get this. It does not by any means mean
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  that not sore, I'm not stiff, I'm not bothered.
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  I don't have bad moments and bad days.
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  So I wanna be really clear about that, OK?
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  So I'm not gonna sugarcoat anything.
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  Like Parkinson's is tough. It's hard.
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  And if you're newly diagnosed, it's going to be OK, right?
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  You're going to go through some challenges, but you'll be OK.
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  And no, actually, no matter where you are on the journey,
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  what's really interesting is, is that we talk about being
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  diagnosed and 1st diagnosed and we just don't know what's
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  coming, right? We're not, we're quite sure.
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  We're trying to figure it out or hitting the keyboard.
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  We're Googling everything we possibly can, watching podcasts,
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  doing everything we can. Well, what's interesting is
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  because it's a progressive disease, OK?
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  And that we really don't know where, how fast or where it's
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  going. It's kind of like we're always
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  being diagnosed, if you think about it.
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  We're always searching. We're always trying to figure
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  out what, what's this new thing? What's this new thing?
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  I mentioned it on I think it was last podcast or what maybe a
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  couple of videos ago that I had to, I'm getting hearing aids.
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  They're not in yet, but I'm getting hearing aids.
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  And that's new for me, right? And so my first question is old
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  age or Parkinson's and starting to do some research and I'm
• 9:22
  getting excited to share some a video with you and some things
• 9:26
  I'm learning about how our hearing is connected to
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  Parkinson's or Parkinson's effects our hearing, I should
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  say. But anyway, so we're always
• 9:34
  learning, we're always trying to find something new.
• 9:36
  And I encourage you and I say, I would say this B diligent,
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  diligent, Oh my God, diligent, Oh Lord, OK, be diligent, right,
• 9:47
  with keeping yourself up to date and educated, right?
• 9:50
  Stay connected here. I will do my best to give you
• 9:52
  the latest, the greatest things that I hear, things that I, that
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  I've come across and I'll make sure that I feed them down to
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  you. So, and again, if there's
• 9:58
  anything ever out there that you're wondering about or you're
• 10:00
  questioning about, you can't find answers, shoot me a comment
• 10:03
  or shoot me a comment or ask me a question, send me an e-mail,
• 10:06
  DM me on Instagram, whatever you need to do and let me know.
• 10:09
  And I'll do my best to help you. And, and if it's like something
• 10:12
  that everybody's asking about, then I'll definitely make sure I
• 10:15
  work it into the podcast. OK, so I'm gonna be honest,
• 10:18
  right? It's given me some things that I
• 10:21
  never expected, right? It slowed me down.
• 10:24
  It slowed me down and, and sometimes that's a good thing
• 10:28
  and sometimes it's, I don't hate it, but it's actually a good
• 10:30
  thing. It slowed me down because when,
• 10:32
  when I did that, it deepened my relationships.
• 10:35
  It's made me more present, more empathetic.
• 10:38
  You know, I've met people I never would have crossed paths
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  with otherwise. I mean this, you know what, I've
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  met the best people, the best people in this community, the
• 10:49
  people with Parkinson's and, and their caregivers and people that
• 10:51
  have a heart for them. You're amazing.
• 10:54
  You're, I mean, this is like an amazing group of people.
• 10:57
  So I, I never, I mean, I mean, it's a, it's a blessing really.
• 11:00
  You know, I've laughed, you know, sometimes at the most
• 11:03
  ridiculous symptoms because really, what the hell else can
• 11:05
  you do, right? I've cried, I've grown, you
• 11:09
  know, and maybe most of all, I've learned what actually
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  matters. And it's not what I thought it
• 11:15
  was going to be. It really wasn't what I thought
• 11:18
  it was going to be. And you know, that's where, you
• 11:21
  know, I'll share again this thing that helped me climb out
• 11:23
  of my lowest point. And that's what I want to share
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  with you right now. Here it is.
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  So here's the thing that's helped me the most.
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  It wasn't medication. It wasn't a routine or some
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  miracle supplement. It was letting go of the
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  pressure to bounce back and learning simply to be where I
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  am. I would say it again.
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  It was letting go of the pressure to bounce back and
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  learning to simply be where I am.
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  You know, they always say like, you get knocked down, you get
• 11:53
  back up again, you knocked up, get knocked down, you get back
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  up again, I got knocked down, OK.
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  And instead of just jumping right back up, it's like, wait a
• 12:03
  minute, where am I now? What's happening?
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  And let me understand this. And and then slowed things down.
• 12:08
  OK? So to say that this version of
• 12:12
  me is still worthy, right? Think about that.
• 12:18
  This version of me is still worthy, even if I move slower,
• 12:21
  even if I'm tired, even if my dreams look different now, my
• 12:24
  future looks different now. I'm still me and I'm still
• 12:28
  valuable. So if you're listening to this
• 12:30
  and you're in the middle of grieving, whether you're
• 12:33
  grieving A diagnosis or maybe you woke up this morning and
• 12:36
  something's changed or something's seeming different,
• 12:38
  so you're starting to grieve that, Let me say this, you're
• 12:42
  not weak, you're not broken, you're human.
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  Grieving the life you thought that you'd.
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  Have is a sign of strength, not failure.
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  It means you love the version of life, right?
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  It meant something to you, otherwise you wouldn't grieve
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  it. And now you're finding your way
• 12:59
  through something brand new. It's OK to be sad, and it's OK
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  to miss what was, and it's OK to dream again, even if the dreams
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  look completely different or a little bit different.
• 13:10
  We may have not chosen Parkinson's, right?
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  Who would? But we can choose how we show up
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  in the face of Parkinson's. We can still create, we can
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  still connect, we can still grow.
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  We can still have a life that matters.
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  We really can. You know, I was, I'm not going
• 13:30
  to get into it here, but I was married for a long, long time
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  with, you know, and, and, and unfortunately, you know, that
• 13:37
  didn't work out. And I said Parkinson's.
• 13:39
  Did Parkinson's have something to do with it?
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  I sure did. It sure did.
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  I found myself 50 years old and single for the first time.
• 13:48
  And since I was like 20 years old and I'm like, I'm like, Oh
• 13:54
  my God. First of all, I don't know.
• 13:55
  I didn't know how to date. I didn't even know how to date,
• 13:58
  you know now. But then I started thinking
• 14:00
  about this. Who in the world is going to
• 14:02
  date a 50 year old man with a disease that has no cure, that's
• 14:11
  progressive, that's going to get worse, that I can't promise what
• 14:14
  tomorrow's going to look like? Who in the world like, how's it
• 14:18
  even possible? This is impossible.
• 14:20
  I started thinking it's impossible.
• 14:22
  But guess what? Guess what I chose to say like I
• 14:27
  had a choice to make. If you think about it, think
• 14:29
  about what I just said at that moment, I had a choice to make.
• 14:32
  Like when I started having those thoughts and I started they,
• 14:35
  they're awful thoughts. They really are.
• 14:37
  But I had a choice to make. I can either say, OK, forget it.
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  I forget it, forget Daddy. I'm just going to like, I'm not
• 14:42
  going to burden anybody. I don't want anybody's pity.
• 14:44
  I don't want to be embarrassed. I don't have to talk about it.
• 14:46
  I don't want to have to do any of this stuff.
• 14:47
  I'm just going to stay single and I can just stay there.
• 14:50
  I really could, but I'm, I don't want to live that way, right?
• 14:55
  I, I, it's OK to be like I said, it's OK to be sad.
• 14:57
  It's OK to miss what was it's OK to be mad.
• 14:59
  You need to grieve. Your life's different and it's
• 15:03
  going to be different, but doesn't mean it's going to be
• 15:05
  awful. Doesn't mean it's going to be
• 15:06
  bad. OK, So I had to make a choice.
• 15:10
  And my choice was I'm going to live.
• 15:12
  I'm going to live. I'm going to dream again.
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  I'm going to see what those dreams look like now.
• 15:17
  And thank God I did. Thank God I chose to, to, to
• 15:21
  show up in the face of it. Thank God I chose that to still
• 15:24
  go, to still grow, to still want something, to still desire, like
• 15:28
  to still want, you know, a good something.
• 15:30
  I want to be happy, man. I mean, I'm, I'm good now.
• 15:32
  I'm, I'm, you know, things are, are not as good as they were,
• 15:34
  whatever you want to call it, like physically.
• 15:36
  But I'm good and I want to enjoy my time.
• 15:40
  And thank God because yesterday I celebrated my first year
• 15:43
  anniversary. Yeah.
• 15:46
  Yeah, my first year anniversary, I never thought I'd be married
• 15:49
  again and actually said I'll never get married again.
• 15:53
  But when you know, you know, and, and I'm so extremely
• 15:58
  fortunate and so happy and I'm so glad that I got off the couch
• 16:03
  and said, you know what? I may have Parkinson's, but
• 16:07
  Parkinson's does not have me. I am not going to let it control
• 16:12
  my life and neither should you. OK, Wow.
• 16:20
  Well, you know what? If this episode resonated with
• 16:22
  you, please share it. Send it to somebody who might be
• 16:25
  carrying some quiet grief, you know, maybe somebody you know
• 16:28
  that that is is feeling down and let them know that they're not
• 16:31
  alone and you've been. And if.
• 16:33
  You've been grieving the life that you thought that you'd
• 16:35
  have. I'd love to hear your story in
• 16:37
  the comments. I really would.
• 16:40
  What's something that that you've had to let go of, right?
• 16:43
  And, and, and what have you found in the process?
• 16:46
  Let's talk about it. Let's talk about it.
• 16:48
  All right, so here you go. Thanks for playing this long.
• 16:50
  Please like this video. It really will help me push it
• 16:53
  out to more people that need it and subscribe for more real talk
• 16:56
  and real hope. All right, so this was life in
• 16:58
  motion and we're doing this together.
• 17:00
  And until next time you keep showing up, you're doing way
• 17:04
  better than you think. Parkinson's may be part of your
• 17:14
  life, but it doesn't get to define it.
• 17:17
  Thanks for listening to Living with Parkinson's, the good, the
• 17:20
  bad, and the reality. If this episode moved you,
• 17:24
  helped you, or reminded you you're not alone.
• 17:27
  Share it with someone who needs to hear it.
• 17:29
  Want to go deeper? The Inner Circle is waiting.
• 17:32
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 17:36
  Bryce. You'll find the link in the show
• 17:38
  notes. Until next time, keep showing up
• 17:42
  and keep doing life today.