Latest / Living with Parkinson’s | Bryce Perry / Why I Cancel Plans Even When I Want to Go: The Hidden Battle with Parkinson’s

Transcript

Why I Cancel Plans Even When I Want to Go: The Hidden Battle with Parkinson’s · Living with Parkinson’s | Bryce Perry

• 0:01
  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.
• 0:25
  Years into the battle, This is the truth behind the tremor.
• 0:29
  Let's begin. If you've ever made plans, look
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  forward to something, even picked out the outfit that
• 0:36
  you're going to wear, and then when that day finally came, your
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  body said no, not going to happen, then you already know
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  what this episode is all about. Well, today we're going to talk
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  about one of the quiet struggles of Parkinson's cancelling plans.
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  And not because we want to, but because sometimes we have to.
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  So if you've ever felt guilty, misunderstood, or just plain
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  frustrated by this, know that you're not alone.
• 1:00
  Today, I'm going to say the things we usually keep to
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  ourselves. Hey everyone, welcome back to
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  Living with Parkinson's, The good, the bad, and the reality.
• 1:07
  I'm Bryce, and this is a place where we talk about Parkinson's
• 1:11
  honestly. We laugh, we cry, we vent, and
• 1:13
  we show up, awkwardness and all. If this is your kind of space,
• 1:17
  feel free to hit that subscribe button and follow along with the
• 1:19
  journey. No pressure, no expectation,
• 1:21
  just connection. And if you want to go even
• 1:23
  deeper, I'd love you for to check out the Inner Circle.
• 1:26
  It's my private membership group where we meet.
• 1:29
  You can post things, you can talk, you can chat with other
• 1:31
  members and then we go live just private, just like a support
• 1:35
  group, just me and you. We're doing it once a month.
• 1:38
  The members want to go twice a month bi weekly.
• 1:40
  So we might just do that. But it's a warm, it's honest,
• 1:43
  it's warm and it's one of those the most meaningful things that
• 1:46
  I'm a part of. The next call is coming soon and
• 1:48
  I'd love to see you there. The link is in the description
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  or you can just click the join right now if you're on YouTube.
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  And now I want to get right into this.
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  Let's talk about cancelling plans.
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  You know, there's a stereotype that I hate, and that's the
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  flake the person bails who's he's unreliable.
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  They're unreliable. You know, the one that has that
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  last minute excuse. I hate it because Parkinson's
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  can make you feel like you become that person, and it's not
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  fair. Yeah, you want to go.
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  You mean to go. Your, but your body, your meds,
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  your fatigue, it just doesn't line up with you on that day.
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  I remember a time I was supposed to go out for dinner with
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  friends. Nothing fancy, just casual.
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  You know, something I was really looking forward to when I took
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  my meds and I timed everything right?
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  Because if you know me and you've been following along this
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  podcast, I'm all about timing and my meds.
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  And about an hour before I was supposed to leave, I just hit a
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  wall. Fatigue, stiffness, brain fog,
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  the whole package, right? I had it all.
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  You know, I sat on the edge of my bed for about 20 minutes and
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  I just stared at the floor. And then I said, and then I sent
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  that that text, that story, I just can't make a text.
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  And they said no worries. But I felt like gutted.
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  You see, what most people don't realize is that Parkinson's is
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  unpredictable. You can plan your day perfectly
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  and still get slammed by off time.
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  You can feel great by 10 AM and like you're moving through
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  cement by 2:00 PM. Add in the anxiety, you know,
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  gut issues, urgency, pain, and you know, it's just about being
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  tired or sorry. It's not just about being tired.
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  It's about managing something that no one else can see.
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  And there's your big problem. I remember this one time I
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  missed this family barbecue and it, it wasn't even far.
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  I was dressed, I was ready. And then I froze physically and
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  emotionally. The idea of being in a crowd,
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  moving slow, you know, being watched, you know, answering the
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  questions, how are you feeling? You know, 15 times.
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  I just, I just couldn't do it. And so I stayed home and I beat
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  myself up for it until I realized that sometimes staying
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  home is the most courageous decision that you can make.
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  Believe it or not, it really is. You know, people sometimes
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  think, oh, you just don't feel like going or, oh, or, you know,
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  you should have pushed through. But here's the truth.
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  If I cancel because I didn't want to go, that's easy.
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  The pain is when you really want to do and you really want to do
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  there, you really want to do something, you really want to be
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  there. And I just can't Parkinson's.
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  Parkinson's has a way of asking us to surrender control.
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  And you know, some days that means saying no to things that
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  you love. You know, I'm all about pushing
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  through. I'm all about going for it.
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  And some days I do and some days I don't.
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  But I used to over apologize to people.
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  I'm so sorry. Please don't be mad.
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  I feel awful. But now I just try to be honest.
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  Hey, I'm having a, a Parkinson's day.
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  I hope you understand. And if they don't get it, that's
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  on them. And if they do, those are your
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  people. You see, if they don't get it
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  and they they try to make you feel guilty or they try to say,
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  God, I've just missed you or, you know, I never see you
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  anymore. And and they don't kind of
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  understand that Parkinson's day then, you know, I just don't
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  have a lot of time for them. I kind of give up.
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  I don't have a lot of time to worry about them or worry what
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  they're, you know, what they're going to think about what I just
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  said. Now, how do I put this in
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  reference? It's kind of like like the, the
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  little boy who cried wolf, right?
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  I mean, I'm talking when I'm talking about the days that I
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  just can't go, the days that I'm like, I have to call it in.
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  I have to call a PD day. Those are my extreme days.
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  I mean, when I know I can push through where it's sort of like
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  I really have to balance out. Do I really just don't feel like
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  going? Am I being lazy?
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  Like I just don't want to go? It's not just not worth the
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  effort or do I really or I really just can't, right.
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  So you have to really balance that within yourself and ask
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  yourself, you know, can I go or am I just being lazy?
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  Because, you know, sometimes we are, sometimes we call it in,
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  you know, and and don't get me wrong, I've used the PD excuse
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  maybe once or twice, but not a lot.
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  So that's the type. I mean, again, if it's one that
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  you're calling in just because if you just don't feel up to it,
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  you know, you just put, put it's but you know, you could do it,
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  then that's totally different. And so therefore, if you're
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  following this procedure, and it's one of those procedures,
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  you know, and it's one of those days where it's like, you just
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  know you just can't, right? It's like you just can't, right?
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  Well, then you have to let go of the guilt.
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  You know, the hardest part of cancelling plans isn't the text.
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  It's the guilt that shows up afterwards, that voice in your
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  head that says they're going to stop inviting you.
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  You know, they think that you're unreliable.
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  I'm letting people down. Have you ever thought those.
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  Let me say this really clearly, you're not letting anybody down
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  by taking care of yourself and your body.
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  You're allowed to choose rest. You're allowed to protect your
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  energy, and you're allowed to show up when you can and say no
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  when you need to. OK.
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  You know, I remember I once had this.
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  I had to cancel this. I had to cancel attending this
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  really important Parkinson's event.
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  Yeah. You know, really.
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  Actually an event for people with Parkinson's, right?
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  And I felt ashamed at first. I like I wasn't Parkinson's
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  enough or I wasn't strong enough to show up.
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  But then I realized being an advocate doesn't mean pushing
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  through everything. It means being honest about this
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  life, what this life really looks like.
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  And that's what I, I tried to do.
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  I mean, I am the most positive, you know, the glasses is half
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  full kind of guy. But there's those days that I
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  just can't. And I need to be honest about
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  that. I need to be honest with myself,
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  right? And I need to be honest with
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  with you, and I need to be honest with, you know, people at
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  an event. There are.
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  That's what PD is. That's why it's awful.
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  That's why it sucks, right? So how do I decide now?
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  Well, these days I ask myself 2 questions before every
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  commitment. Do I have the capacity for this
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  today, right? And if I need to cancel, will I
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  still respect myself? If the answer is yes to both of
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  them, then I commit. If the answer is no, I
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  gracefully bow out. And it's not about proving
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  anything. It's about protecting the
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  limited energy that I have. Isn't that something, you know,
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  you're, you are the only one. It's really, you're the only one
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  if you're living with Parkinson's, you're the only
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  one. Actually, you know what, even if
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  you're a caregiver, you're the only one that can protect the
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  energy that you're going to have in a day.
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  And I want my energy that I have to go to the best things of my
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  day. And maybe that is going out
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  somewhere. Maybe that is seeing my friends.
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  Maybe they're just hanging out with family.
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  Maybe it is. But maybe on that day, maybe
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  it's not. And you have to really balance
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  that out, right? So if you're watching this, if
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  you're someone who cancels plans more than you'd like, I see you.
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  You're not lazy and you're not weak.
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  You're not unreliable. You're adapting.
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  You're listening to your body. You're fighting a fight that no
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  one else sees. And that's not flakiness, that's
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  courage. How about that for a quick one?
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  If it resonates with you, hit the like button and please leave
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  a comment. Tell me about a time that you
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  had to cancel or how you had to handle those days when
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  Parkinson's said no. I read and reply to every single
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  comment. I'm a little behind right now,
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  but I will catch up. And if you want to go a little
• 9:05
  deeper and you want to talk more openly about this stuff, I talk
• 9:08
  about this stuff really openly in the inner circle.
• 9:12
  It's a community where you can hang out with people just like
• 9:15
  you. You can leave comments, you can
• 9:17
  talk to each other, you can DM each other.
• 9:19
  I built it just for you and me. And then we also have our live
• 9:23
  our live calls that we're doing. And you know, we had one, I
• 9:26
  think just the other week and it went so well.
• 9:28
  It was amazing. It was so, so fun.
• 9:30
  We went pretty deep and we got to know each other pretty pretty
• 9:33
  well and now they're asking if we could do it bi weekly and I'm
• 9:36
  we might just do that. So anyway, if you want to join,
• 9:39
  there's no pressure, there's no expectation.
• 9:40
  It's just a connection, right? The links in the description or
• 9:44
  you can click on join if you're watching on YouTube or just look
• 9:46
  in the descriptions or the show notes and and they'll be there.
• 9:49
  And you know what just subscribe to the channel.
• 9:51
  If you haven't done it, please subscribe, share this video with
• 9:53
  someone who needs to hear. You're not a flake and you're
• 9:56
  not. You're just doing your best and
• 9:58
  you're not alone. So I will see you next time.
• 10:01
  I appreciate you, I love you. Keep sounding strong, keep doing
• 10:05
  life and keep doing life today and I'll see you in the next
• 10:08
  episode. Bye now.
• 10:15
  Parkinson's may be part of your life, but it doesn't get to
• 10:18
  define it. Thanks for listening to Living
• 10:21
  with Parkinson's, the good, the Bad, and the Reality.
• 10:25
  If this episode moved you, helped you, or reminded you
• 10:28
  you're not alone, share it with someone who needs to hear it.
• 10:32
  Want to go deeper? The Inner Circle is waiting.
• 10:35
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 10:38
  Bryce. You'll find the link in the show
• 10:40
  notes. Until next time, keep showing up
• 10:44
  and keep doing life today.