Latest / Living with Parkinson’s | Bryce Perry / The Hidden Parkinson’s Side Effects Doctors STILL Won’t Warn You – Part 2

Transcript

The Hidden Parkinson’s Side Effects Doctors STILL Won’t Warn You – Part 2 · 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.
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  Let's begin. Last week I was standing in the
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  kitchen when suddenly my hands started to vibrate.
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  Now they weren't shaking like tremors, they were vibrating on
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  the inside. And here's the wild part.
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  Nobody could see it. I looked completely fine.
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  And that's the problem with so many Parkinson's side effects.
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  They're invisible. They're unexpected.
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  And yeah, they're not in the brochure.
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  So today we're going to dive into Part 2 of the side effects
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  doctors will not warn you about. And some of these, honestly,
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  they're worse than tremors. Welcome to Living with
• 1:02
  Parkinson's, The Good, the Bad, and the Reality.
• 1:06
  Real talk, real life, real community with Bryce Perry.
• 1:11
  Let's begin. Hey, friends, welcome back.
• 1:15
  If you saw Part 1, then you already know how real this is
• 1:19
  going to get. You know, thousands of you
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  dropped comments, you shared your stories and you said things
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  like, thank you. I thought I was the only one.
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  And if this is your first time here, I'm Bryce.
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  And this is living with Parkinson's.
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  The good, the bad and the reality.
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  Now, I've been living with Parkinson's for over 15 years
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  and I'm not here to sugarcoat anything.
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  This channel is about real life, real community and real support.
• 1:41
  So stick around to the very end to unlock today's Bryces and one
• 1:44
  of my signature one liners that's real, raw or ridiculous.
• 1:48
  So go ahead, hit that subscribe button, join the movement.
• 1:51
  Let's talk about what really happens with life when you live
• 1:54
  with Parkinson's. Oh, and you know what?
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  Stick around, because I've got a story coming up about nearly
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  blacking out in the pharmacy aisle and scaring a poor guy who
• 2:03
  was stocking toilet paper, and you really don't want to miss
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  that one. So let's kick things off though,
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  with the one that inspired today's video, the internal
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  tremors. So it's like your insides are
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  shaking, right? But nothing shows on the
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  outside. It's unnerving, it's
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  disorienting, and it makes you feel like you're imagining it.
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  I've had days where I felt like I had an electric toothbrush
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  buzzing inside my chest, but to everyone else, I look totally
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  calm. It's like living in a haunted
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  house where the only person who knows it's haunted is you.
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  So if you've ever felt that invisible vibrating, then give
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  this video a thumbs up or comment right in the comments
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  right now. Me.
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  That way I won't feel less alone and hopefully you don't either
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  'cause you know it's not just you.
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  Let's let people know that it's real.
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  A lot of people just don't even believe it's real if they can't
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  see it, it's not happening. That's what we're going to do
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  here. Comment me.
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  Let's go now here's one that I have so much fun with and this
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  is another symptom that they didn't tell me about was brain
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  fog, or as I like to call it, that moment when you forget the
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  word for toaster and you call it the TV bread cooker, right.
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  I've had conversations where I'm mid sentence and the word is
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  just gone. I've had podcasts and videos
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  where you know the word is gone. Opinions, right?
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  Here we go again. How many times?
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  I know people think that's hilarious, but again, it was one
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  of those things that just disappeared.
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  It's like someone yanked the cable right out of my brain.
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  It's not dementia, but it's very frustrating.
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  I once forgot how to say appointment during my my
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  neurologist appointment, right. And yes, this symptom has made
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  me miss messages, appointments, and even speaking geeks because
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  I've scrambled the dates and the times.
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  How about this, once you drop a comment, what's the weirdest
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  word that you blanked out on? Or do you blank out on words?
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  Make sure you know, sometimes I feel like I'm all alone.
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  Anyway, let me know in the comments is is you know, if it's
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  happens to you, let me know what happens to you.
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  And if it doesn't happen to you or if it does happen to you, let
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  me know what word you blanked out on because I want to see if
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  there's a consistent thing. If it's the same word every
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  time, I don't know. All right, let's move on to
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  another thing that the another symptom that they did not tell
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  me about when I got diagnosed, it was the drops in blood
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  pressure right? Let's talk about that
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  orthostatic hypertension, AKA the I just stood up too fast and
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  now the floor is spinning feeling.
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  I once stood up from a pharmacy blood pressure chair.
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  I turned to say thank to thank the staff and the entire room
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  did like a barrel roll. I grabbed the nearest thing for
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  balance, which happened to be guess what, No, you won't guess
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  it. OK, here it is, a cart full of
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  adult diapers. The poor guy stalking the toilet
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  paper nearly had a heart attack. And now I stand up very slowly.
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  That ever happened to you? And if it has happened to you,
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  they'll let you know. You're not alone.
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  And you probably haven't done it as brilliantly or as graceful as
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  I have. But you're not alone.
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  It happens. And it's not just getting older.
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  It's Parkinson's. It really is now something I've
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  been dealing with a lot lately. And, and again, this is, you
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  know, where I've been kind of pushing into looking deeper into
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  what's going on here. But how about this, another
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  symptom that they did not tell me about and they didn't tell
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  you about or maybe didn't tell you about is your internal
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  thermostat, right? My, my internal thermostat is
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  broken. Some days I'm freezing in a
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  hoodie. Other days I'm sweating through
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  my shirt in air conditioning and I don't even get my, don't even
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  get me started when I go public speaking.
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  It's crazy. I've sweat through more dress
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  shirts than I care to admit. And this isn't just nerves,
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  right? It's that anatomic dysfunction,
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  Parkinson's, hijacks the part of your brain that controls body
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  temperature and says, let let's mess with them today.
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  Ever sweat for no reason? Or have you ever froze when
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  there's no one else's? I don't know.
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  My wife Carmen, she says I have like this perfect internal
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  temperature and she said or perfect temperature that I need
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  the house to be set at, it's not 19 or 20 or 21 if you're in
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  Celsius or I don't know, 787980 in Fahrenheit, she says it's
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  like 79.2 or 70.3, right? Or in Fahrenheit it's 19.6.
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  And she said anything over and I'm freezing anything under and
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  I'm hot. Did I just do that backwards?
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  I really did, I think. Anyway, you catch my drift.
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  And if that's you right, here's all I want you to put in the
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  comments. Hot flash hero or frozen solid.
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  Let me know. Let me know if that's you.
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  Now here is one that I really want to talk about because it's
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  not talked about often. And we've gotten so many
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  comments and there were so many comments from the episode 1.
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  And that's Constipation. And Yep, we're going to go
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  there. Let's talk about Constipation.
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  You know, when Parkinson's with Parkinson's does not just eat
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  more fiber, OK, It's, it's my meds aren't working because
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  nothing's moving. You know, one time I went like 4
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  full days a day, five. I was Googling, can a person
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  explode from not pooping? Right?
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  It's not just uncomfortable, it throws off your meds, your mood,
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  your everything. It's very frustrating.
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  It's extremely nerve wracking. It can be humiliating.
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  And if that's you and you're dealing with that, let me know.
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  Is this something they told you in the very beginning or did you
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  have to learn this along the way?
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  Or are you just learning it now? Because it's something that we
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  may dive into. Actually, I probably I'm going
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  to dive deeper into in later, but let me know drop your drop
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  your safest Constipation hacks in the comments because somebody
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  is going to thank you. There's, you know, everybody
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  needs 1 and I don't know them all, but it is something that so
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  many people deal with and it's it's such a like this hidden
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  embarrassing symptom that we don't want to talk about.
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  And I think we're going to have a whole episode just about, you
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  know, pooping. But anyway, let me know in the
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  comments. Let me know if that's you.
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  Let me know if it's something to deal with and let me know if you
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  think it's a good idea to do a whole episode of that.
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  OK, here's the sixth, another one, the 6th one that they don't
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  tell the symptom they don't tell you about.
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  And this one is for the over prepared.
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  OK. I plan my outings based on
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  bathroom access. I've memorized every clean
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  restroom in the city because when I got to go, I have got to
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  go. No warning, no grace period.
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  And yes, I've had accidents and more than once.
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  Is it humiliating? It is very humiliating, but
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  you're not gross and you're not alone.
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  You've just got someone navigating Parkinson's with
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  courage. So fill up that cup, man.
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  Fill up that cup. And one that I've touched on,
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  but I touched on it in, in chapter 1, chapter one in the
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  first, in the first video. And, and, and this one I, you
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  know, I'm dealing a lot with and I'm feeling a lot of people are,
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  are really messaged hard on this one.
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  And I really want to touch on it again, but it's, it's, I want to
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  go a bit deeper on it. So it's this one.
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  My face doesn't always show what I'm feeling.
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  My voice is quieter. My smile doesn't always show up.
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  People are always sitting and asking, are you mad?
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  Are you bored? Are you tired?
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  And you know what? Yeah, sometimes I'm tired,
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  sometimes I'm mad, and sometimes I am bored.
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  But sometimes I'm having the best moment of my day and nobody
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  can tell. That disconnect, it wears on
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  you. Have you been there?
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  And if you're there, you're feeling that here's the truth.
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  You don't know anyone. A performance.
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  You're still you even if your face isn't playing along.
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  So what helps? Well, one of the main things
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  that helps is staying on, right? Staying on your on time instead
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  of your off time. And you know me, I'm tell you
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  again, because repetition is learning.
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  What do you you know, how do you help?
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  Stay on, Journal it, track your trends.
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  I track my meds, my food, my sleep.
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  I use my pill bottle, pill, pill cap timer religiously.
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  And you know, some of the other things that I do, I carry around
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  sugar because sometimes nausea hits out of control out of
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  nowhere. So I got my peanut M&M says, you
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  know, but my most powerful tool on how I deal with all of this
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  stuff, because it's embarrassing, I'm learning as I
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  go, is my community. It's talking with you, talking
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  with others, reading through the comments and sharing openly in
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  the inner circle. And it reminds me that I'm not
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  alone and neither are you. And if you're feeling that
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  embarrassment or that sting or that frustration or that anger
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  over these symptoms that no one told you about or symptoms that
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  you're dealing with, you just can't find a way out.
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  You need community and you need a, you need a bat.
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  There is support groups probably all around the world and there's
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  support groups around you. I know there is, or there's
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  places to plug into, right? And you need to do that.
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  OK, so let's keep this going. Tell me in the comments, what's
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  your hidden symptom that nobody warned you about?
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  Just drop it in there and vote for the ones that you want me to
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  cover in Part 3. So if you see a good one in
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  there and you agree with it, give me, you know, vote for it.
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  And I, I don't know, I'm going to put together in part three,
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  you know, we're starting a symptom of the week soon.
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  So let me know what you want me to dive deep on next.
• 11:22
  Is that Constipation? Should we go deeper on that?
• 11:24
  Should we go deeper on the mask? You tell me.
• 11:26
  And if this video helped you or made you laugh or or made you
• 11:29
  feel seen, give it a like. And if you know somebody feeling
• 11:33
  alone with Parkinson's, send this video to them.
• 11:36
  Please do that. And if you want to go a little
• 11:38
  bit deeper, you want to talk a bit more about in depth about
• 11:41
  this, You don't want to put it in the comments in public, but
• 11:45
  then join in the circle. It's a private group, monthly
• 11:47
  live talks, real talk. The links in the description.
• 11:50
  No pressure is totally up to you.
• 11:52
  And if you made it this far, then you've unlocked the Bryce
• 11:56
  system of the episode. And here's your Bryceism with
• 11:59
  Parkinson's. Your symptoms don't knock.
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  They barge in, uninvited and pantless.
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  You're not alone in this. We're figuring out.
• 12:07
  We're figuring out together, one day, one video and one story at
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  a time. And until next time, you keep
• 12:13
  doing life and you keep. Parkinson's may be part of your
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  life, but it doesn't get to define it.
• 12:21
  Thanks for listening to Living with Parkinson's, the good, the
• 12:24
  bad, and the Reality. If this episode moved you,
• 12:28
  helped you, or reminded you you're not alone, share it with
• 12:31
  someone who needs to hear it. Want to go deeper?
• 12:35
  The Inner Circle is waiting monthly Zoom calls, 24/7
• 12:38
  community, and a Direct Line to Bryce.
• 12:41
  You'll find the link in the show notes.
• 12:43
  Until next time, keep showing up and keep doing life today.