Latest / Living with Parkinson’s | Bryce Perry / 3 Body Signals Parkinson's Taught Me You Can't Ignore

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3 Body Signals Parkinson's Taught Me You Can't Ignore · 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. So one time, I tried to push
• 0:33
  through a walk with stiff legs, thinking, you know, I just need
• 0:35
  to move more. Halfway in, I ended up on the
• 0:38
  ground in someone's front yard. And that wasn't the walk I
• 0:41
  needed. It was rest.
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  With Parkinson's, if you don't listen to your body, it will
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  find a way to grab your attention.
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  All right, well, welcome to the channel.
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  I want to thank all my loyal viewers and listeners for coming
• 0:53
  back. And if you're new here, my name
• 0:54
  is Bryce and this is with Living with Parkinson's, the Good, the
• 0:57
  bad and the reality. And this channel is all about
• 1:00
  providing strength, hope, and support to individuals living
• 1:03
  with Parkinson's disease and their caregivers.
• 1:06
  And I share motivational stories and tips and insights to help
• 1:08
  you navigate life of Parkinson's.
• 1:10
  And if you're looking for that kind of content, then make sure
• 1:12
  to subscribe and come along for today's journey.
• 1:14
  So today we're talking about what what Parkinson's has taught
• 1:19
  me about listening to my body. I want to get right into this.
• 1:22
  So I used to think I knew my body pretty well.
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  I trained for, for sports all the time.
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  I played hockey, I pushed through colds.
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  I recovered from injuries, like, you name it.
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  I, I, I knew it, right? But Parkinson's changed the
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  rules early on. I remember getting dressed one
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  morning and my right arm just, it just wouldn't swing over.
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  No pain, no warning, just this weird stiffness.
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  And I thought, you know, maybe I'd slept funny.
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  Spoiler alert, I I didn't, I didn't know it at the time, but
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  it was one of those it was when I call my body's whispers.
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  OK, so I didn't know it then, but now I know it and I call it
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  again. It was like my body's first
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  whispers. And like most guys, I ignored
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  it. And that's a guy thing, right?
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  I think I'm just throwing all the dudes under the bus with me
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  and I'm going to blame it on my gender.
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  It wasn't really Bryce. It wasn't my fault.
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  It's just a guy thing. I'm just kidding.
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  But you know what? A lot of us ignore things, don't
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  we? Even some men and women.
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  Everybody does. Some people do, some don't.
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  But that's why I learned the hard way.
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  You know, there was a stretch a few years back where I kept
• 2:31
  pushing myself, right? I was filming content.
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  I was doing events. I was working full time.
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  I was trying to be normal, right?
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  Normal. I had a weekend where I did 2
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  tasks or two talks. I flew home and then I promised
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  Carmen I'd mow the lawn. Halfway through, I got dizzy.
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  Not spinny dizzy, just like disconnected, right?
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  I sat down on the deck and I remember Carmen.
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  She walked out and she handed me some water and she said, you
• 2:55
  didn't take your meds, did you? Huh.
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  She was right. I skipped A dose during the
• 3:01
  flight home. Totally missed it, you know, and
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  then I tried to catch up like a Tylenol, like I was on the, on
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  the car, got off the plane went, Oh my God, I messed up.
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  I totally forgot to take my meds and I just, you know, start
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  pounding some in there so I'd be good when I got home.
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  And it, it doesn't work like that.
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  And that moment taught me that this body, my body, excuse me,
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  my body has a rhythm. When I ignore it, everything
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  else breaks. And and that's what happens when
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  you start ignoring these little things, this this little rhythm,
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  this little whisper from your body that there's something
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  going on and you ignore it and just push through.
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  I'll deal with it later. I'll I can finish this and then
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  I'm going to do that. That's when it gets you.
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  So here's what's helped me, right?
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  Like so how what helps me tune it in.
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  So that's what you have to really do is how do I TuneIn to
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  these these whispers that my body are making these these, you
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  know, signs that my body's giving me.
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  So how do you tune it in? How do you tune it in and the
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  real stuff? OK, so here's what helped me.
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  Not perfectly, not perfectly, but enough, enough to get by
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  enough to get by, right? So crazy things.
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  I keep sticky notes near the coffee machine that just say
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  check in, right? So right by my coffee machine,
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  check in. And guess what?
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  In case I missed that sticky note, I have one on the bathroom
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  Mirror Now that I shower and I have my kind of bathroom in the
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  basement right in the mirror. It says check in.
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  OK, check in. And what does that mean?
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  OK, it's not a check in for coffee.
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  It's not a check in to brush my teeth.
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  It's a check in. Am I stiff?
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  Is my draw tight? Am I dragging right?
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  Those type of things I have to recognize.
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  So that's that's triggers to remind me.
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  And if I I'm like, Oh yeah, you know what it is?
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  I'm feeling tight, I'm feeling stiff.
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  I'm feeling this way, right? Whatever way it is that that's
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  my trigger to well, what I do is I do a voice note on my phone
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  and then I put that into my journal.
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  And so that's how I do it. And it because it's easy enough
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  to have a journal it, whether you write, write, write or
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  electric electronic journal where you're going to speak into
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  it, whatever might be. And you know, we all may have
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  them. And if you open up half the, you
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  know, it's a good start. You probably have a day or two
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  in there and then you forgot. And then once you forgot enough
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  times, you kind of give up. So I trigger myself.
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  I have reminders everywhere. Go Oh my God, journal, Oh my
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  God, It's just a quick for me, it's really quick.
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  I grab my phone like this, like I just grabbed my phone here and
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  I go like I just go, hey, you know, Monday morning, what's
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  today, Saturday, you know, July the 8th, whatever it might be,
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  you know, got some stiff. My jaws really locked up.
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  I slept for seven hours last night, so good sleep and I took
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  my meds at 6:00 AM and right now it's, you know, seven O 5.
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  And so I, I do that and I can do that because again, I, I, my
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  first meds, I, I'm in bed till, you know, half an hour, 45
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  minutes until they kick, they kick in and then I get moving.
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  So trigger yourself, OK, not, and don't bring yourself to
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  drink coffee. Everybody knows how to drink
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  coffee, right? Don't trigger, just trigger
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  those things. So don't say journal entry
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  'cause you're like, oh, no, I'm gonna do my journal, right.
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  No, you wanted to say like, just just just just check in, check
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  in anyway. Do that, please.
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  Right. So here's another thing.
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  Carmen sometimes gives me that look.
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  You know that look, you know that look when someone just you
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  can tell in their eyes, they look at me like, are you fading?
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  Right. That used to annoy me.
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  Oh, my God. It would it would drive me nuts.
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  I'm like, would you please like, leave me?
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  I'm good. Like everybody OK, you're
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  looking. And now it's that look.
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  And now, and he's really annoying me.
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  Now I'm. I'm really grateful for it.
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  Yeah. Because it can.
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  It's, it's, it's she's, if I'm missing it, right, she gets it.
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  I tell people when I work, when I'm working, I'm at an event,
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  everybody I'm working with, I'm like, Hey, if you see this
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  happening, just tell me pill, you know, meds, meds, meds.
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  Because I get, I can get mixed. I cannot mixed up.
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  I can get just so carried away at an event and people are
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  trying to talk to me and I'm trying to talk to them and you
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  know, in my, my everything's going off and I forget or I
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  don't have time or I'm going to say, OK, I'll take them in 5
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  minutes. Soon as I'm done this
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  conversation, I'm going to take my meds.
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  Soon as I'm done with this conversation, I'm going to take
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  my meds. As soon as I'm finished doing
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  this, I'm going to take my meds. And you know, I, I'm going to
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  preach it again. I'm going to keep preaching
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  this. I am meds on time every time.
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  Meds on time every time. Believe me, try it.
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  Meds on time every time. I don't care what you're doing.
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  Stop. And you've seen me.
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  You've seen when we do the live podcast on Sundays, you know,
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  don't forget it tomorrow. So when we do the live podcast
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  on Sundays, I, you know, there's been times my wife has put in
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  the comments. Take your meds or you'll just
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  see me take them. So it doesn't matter what I'm
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  doing. I'm, I'm live during a podcast,
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  video, audio podcast, right? And I'm taking my meds because I
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  believe in that and I really do. So, so those things used to
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  annoy me. So I tell people that around me,
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  if you see me acting this way, just remind me of my meds.
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  And I really apologize. I don't know, I'm coughing.
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  So I've gotten very grateful for it, right.
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  So my phone, my phone alarm, it doesn't just remind me to take
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  meds. It's, it's a pause button,
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  right? So when my alarm goes off, take
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  my meds, it's a pause button as well.
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  I treat it like a pause button. It's like I stop and breathe,
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  right? Breathe.
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  And I ask, is this a good moment to take it?
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  Like is this, am I in the middle of stress?
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  What which could make which could mess with how it works,
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  right? So like I think about where I'm
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  at. So I got my meds out.
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  And again, when I talk about meds, I'm, you know, always
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  check with your team, right, your doctor, your healthcare
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  team, don't never just kind of wing things to see what happens.
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  Make sure that your doctor's on board.
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  And if you've got a good doctor like mine, we experiment with
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  things right within reason. We experiment and we, we test
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  because I'm always want best. I always want best, right?
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  I want the the most dopamine so I have the least amount of of
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  symptoms, right, with the least amount of pills.
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  So but I checked myself. So I go to take my pills.
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  I'm like, am I really highly stressed right now?
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  What do I have going on for the next three hours?
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  I take my meds every three hours, right?
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  And I have a video, all of my meds.
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  You can find it in the podcast. So just look down.
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  But I talk about timing and what I take, but I take it every
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  three hours. So I think, OK, next three
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  hours, what's happening? So that's kind of that moment
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  when I know, hey, wait a minute, I'm having chicken, I'm having
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  some protein. Like if I was if it's just for
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  dinner and I know I'm going to have a heavy protein meal and I
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  know I'm going to be ripping through my dopamine fast.
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  That's at that moment I'll take another, I get an extra half
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  pill or another pill because I know I'm going to need it,
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  right. So that's I just take a stop,
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  take a minute and not even taking that breath, that moment
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  breath. OK, here we are how we doing
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  It's like a check in, right? How we doing?
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  Are we doing OK? God, we got this OK, all right,
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  cool. And I also have here's another
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  one. I also have what I call sock
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  tests. Now, have you seen that one of
• 9:31
  those motivational miss apartment Parkinson pick me UPS?
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  I do those those quick little hits every, you know, morning.
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  I tried it every morning. I've been slacking.
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  I apologize, but then I haven't had a chance.
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  But I have what they call, I call them sock test.
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  So if I can't put on socks without sitting down or
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  grunting, I know I'm running behind physically.
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  OK, So I, I can't put them down if I'm struggling to put socks
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  on, if I can't just kind of lean against the wall somehow.
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  And I got this little technique I do.
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  But if I want to, if I have to sit down and I'm like, oh, and
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  I'm trying to get them on, I know, I know in the morning
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  something, you know, I'm struggling, something's
• 10:03
  happening. So none of this is scientific.
• 10:05
  I'll, I'll just be real. I'm gonna be real cautious, not
• 10:08
  scientific. But here's the thing.
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  It's real life, man. This is my life.
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  This is these are things that I've these are hacks and tricks
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  and things that I've done that I've been doing for 15 years.
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  I've been on levodopa for 15 years.
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  I've, you know, since I got diagnosed.
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  It's coming up next month, month and a half till I'm 15 year
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  anniversary, the birthday of my life changing when I got
• 10:27
  diagnosed. But it's been 15 years and boy,
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  I picked up a lot of little signals and signs.
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  So you look for the signals and signs with your within your body
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  within you know what's happening.
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  That's going to make your life so much easier because you put
• 10:41
  that those are your guardrails that what you're going to do to
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  to to to to manage this. Now I want you to understand
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  something. Your doctor, OK, is your
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  resource, right? The doctors there to guide you.
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  Your doctor is there, but you have to be the manager.
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  You see your, your neurologist or your movement disorder
• 11:00
  specialist, you'll maybe see them once every six months,
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  right? I think some are four months,
• 11:05
  some are three months, most are six months.
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  That's like the, the, the normal is every six months.
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  So your doctor's not your manager, right?
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  Your doctor is your a resource. He's your guide or she or she,
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  he or she is your guide. You need to manage it.
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  And so how do you manage things? You have to learn how they are
• 11:24
  what motivates different things like think about that.
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  And if you don't manage it, if you don't manage it, that's why
• 11:30
  you're all messed up. That's why things are your meds
• 11:32
  are screwy. That's why your, your, your
• 11:34
  symptoms are going wild when you're managing it really
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  closely when, like I said, meds on time every time, right?
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  You know, sleeping the right way, trying to get, I mean,
• 11:42
  don't get me wrong, I get it. It's hard to say, but I, we have
• 11:44
  those moments, but you're doing everything that you need to do
• 11:47
  to make sure that you're in the position for the most optimum
• 11:51
  moments of, of, of what you're living, right?
• 11:54
  That's just, there was my little rant.
• 11:55
  There's my little rant. And if you like that rant here,
• 11:57
  you're still listening. You haven't subscribed yet.
• 11:58
  Come along with a ride. This is this real talk.
• 12:00
  We just kind of get into it and, and riff.
• 12:02
  So we're just riffing here. So, but I want to talk to you
• 12:05
  something a little bit even more.
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  It's like the signals that nobody talks about.
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  OK, so a few months ago, I noticed something weird, right?
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  I was blinking more like constantly.
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  I was just like just sitting here just blinking and I'm like,
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  what in the world? I thought, man, you know, do I
• 12:19
  have to change my contacts? Do I, you know, I, I guess I've
• 12:21
  been looking at the screen too long.
• 12:22
  I've been on my phone too long. It was really weird.
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  Turns out turns out it was a subtle off period.
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  Interesting, right? Has that ever happened to you?
• 12:32
  Let me know in the comments. Like start, start a comment run.
• 12:35
  You know, this is a community, right?
• 12:36
  This isn't about Bryce. This is a community.
• 12:38
  So, you know, do you notice, are you listening to your body?
• 12:41
  Have you heard or sensed those things?
• 12:43
  Has this ever happened? Has that, that that constant
• 12:45
  blinking happened to you? Well, for me, it turned out it
• 12:48
  was an actual off time. Like holy moly.
• 12:50
  And then I realized, Oh my gosh, I'm behind on my pills.
• 12:52
  Like whatever reason, I did the update on my, my iPhone and my
• 12:57
  alarm list like just disappears sometimes.
• 12:59
  So I, you know, I miss it, right?
• 13:01
  I miss it. And I go up and I grab my, my
• 13:03
  pill bottle and of course I'm using my pill timer cap.
• 13:05
  And it's been, you know, 3 hours and 36 minutes and 36 minutes
• 13:08
  behind. So that's usually when I'm going
• 13:10
  to hit about that 30 minute mark when I'm after my last minutes,
• 13:13
  when I'll start my off periods so that I'm like, oh, so now
• 13:17
  there's a sign, right? There's a signal.
• 13:18
  There is a signal in my body. So oh, my eyes are blinking.
• 13:22
  Oh, oh, geez, when's the last time?
• 13:24
  And I realized, Oh my gosh, I'm hitting an off period.
• 13:25
  So then I can quickly adjust. So it's listening to your body,
• 13:28
  listening to it and learning it. OK, another time I found myself,
• 13:32
  and I don't know, if you're not in Canada, you don't know what
• 13:35
  this is, but a Canadian Tire, recall the Canadian Tire.
• 13:36
  So think about a Walmart I guess, or whatever.
• 13:39
  So anyway, I found myself snapping at this clerk at
• 13:41
  Canadian Tire, right? Totally not me.
• 13:43
  I don't snap at people I'm you know.
• 13:45
  But later that day I realized I'd missed 2 doses and I'd
• 13:49
  barely eaten. And again, it happens, right?
• 13:51
  It happens, but OK, Oh my gosh, if I start going to being
• 13:55
  different, my mood's different. It's not I'm, I'm being somebody
• 13:58
  who I'm not again, listen, listen, it's like, oh wow, boom,
• 14:02
  what's up? What's going on?
• 14:04
  Right. And then I'm going to check in,
• 14:05
  make that recording. So I will go back and I'll
• 14:08
  realize all these things like watch for these trends, huh?
• 14:11
  That's what's going to happen. So sometimes Parkinson's shows
• 14:14
  up in your muscles, right? Sometimes it shows up in your
• 14:16
  mood and sometimes it shows up in people around you to how
• 14:20
  they're going to react to you or how you're reacting to them,
• 14:23
  right. So if I could go back like that
• 14:25
  10 or 15 years ago, you know, that early diagnosed price,
• 14:28
  right? I was, I was thinking about
• 14:30
  this. What would I tell me?
• 14:31
  What would I tell an early diagnosed price?
• 14:33
  And it's like, this is what I'd say to me.
• 14:35
  Like you're not weak for slowing down, right?
• 14:37
  You're not weak for slowing down.
• 14:39
  You're smart for tuning in. You're not weak for slowing
• 14:41
  down, but you're smart for tuning in.
• 14:43
  So slow down, listen and watch your body watch it.
• 14:48
  I, you know, I tell him, I tell him to start tracking, not
• 14:51
  obsessively, but enough to catch the patterns.
• 14:54
  I tell myself not to lie to myself, that pushing through
• 14:58
  really doesn't cost me, right? I lie to myself.
• 15:01
  I'm just going to push through this, and then I'll deal with
• 15:03
  me. I'm going to help here, and then
• 15:05
  I'll take care of myself. No, no, no, that's a lie.
• 15:09
  It's, you know, take care of yourself first, right?
• 15:12
  I tell myself to get curious about my body, even when it's
• 15:16
  frustrating. You wouldn't want to ignore it.
• 15:18
  Even it's like, Oh my God, now what?
• 15:19
  Now what? Now what's shaking?
• 15:21
  Now what's happening in my body? No, I'm going to watch.
• 15:23
  OK. This is what's happening.
• 15:25
  Why is this happening? Has it happened before and when
• 15:28
  it happened before. Go back to my check in, huh?
• 15:30
  I didn't sleep well and I missed some meds.
• 15:33
  Hey, guess what? I you know that.
• 15:34
  You know what I mean. You look for those things.
• 15:37
  And I tell myself to listen to Carmen.
• 15:38
  No, it's teasing. No, listen when she says are you
• 15:42
  OK? Are you OK?
• 15:44
  Don't get mad. Don't get mad at her.
• 15:46
  Listen because that's code for you.
• 15:47
  Don't look like you, right? When someone says you love, when
• 15:51
  someone who's around you a lot, your care partner, your your
• 15:54
  spouse, whatever might be your partner, your kids and they say
• 15:57
  are you OK? That's a code for you.
• 15:59
  Don't look like you or you're not acting like you.
• 16:01
  So don't get upset. Think, just stop and reflect.
• 16:05
  Stop and reflect. So living with Parkinson's, it's
• 16:09
  taught me that listening to your body isn't optional.
• 16:12
  It's survival. And the hard part is your body
• 16:14
  doesn't always speak clearly. Sometimes it Mumbles, sometimes
• 16:17
  it gives me riddles, right? But it always speaks.
• 16:19
  And the more I tune in, the more I trust that I'll know what I
• 16:22
  need. That's how I keep showing up for
• 16:24
  my life. Not perfectly, but present.
• 16:27
  Not perfectly present. You know, with Parkinson's, your
• 16:29
  body becomes the best communicator that you never
• 16:33
  asked for. The trick is learning the
• 16:34
  language before it starts shouting.
• 16:40
  Now. Hey listen, if this episode
• 16:41
  resonated with you, I'd love to hear what's one small signal
• 16:46
  that your body gives that others would miss but you've learned to
• 16:49
  notice. Drop in the comments and if you
• 16:52
  want more support, connection, and behind the scenes access,
• 16:55
  join my Inner Circle. It's a real life community,
• 16:58
  right? We do this journey together and
• 16:59
  it's better when we do it together.
• 17:02
  Link is in the description below.
• 17:04
  We actually have a live call coming up this Wednesday.
• 17:07
  It's the first Wednesday of every month.
• 17:08
  So if you're not a member, come on in, come on in, jump in, hang
• 17:11
  out with me. It's live.
• 17:13
  It's just, it's not like this. We're not doing this.
• 17:15
  We're just like literally sitting there on like a Zoom
• 17:17
  call and just talking about life.
• 17:19
  You know, I'm sharing, Brian's on there, other people are on
• 17:22
  there. We're just sharing, We're
• 17:23
  helping each other. We're just doing, we're doing
• 17:24
  life. So no obligation, just an
• 17:27
  opportunity. Thanks for being here and thank
• 17:31
  you for listening your body. Parkinson's may be part of your
• 17:38
  life, but it doesn't get to define it.
• 17:41
  Thanks for listening to Living with Parkinson's, the good, the
• 17:44
  bad, and the reality. If this episode moved you,
• 17:48
  helped you, or reminded you you're not alone.
• 17:51
  Share it with someone who needs to hear it.
• 17:53
  Want to go deeper? The Inner Circle is waiting.
• 17:56
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 18:00
  Bryce. You'll find the link in the show
• 18:02
  notes. Until next time, keep showing up
• 18:05
  and keep doing life today.