Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s Myths: The Biggest Lies People Still Believe About the Disease

Transcript

Parkinson’s Myths: The Biggest Lies People Still Believe About the Disease · Living with Parkinson’s | Bryce Perry

• 0:00
  I know what I hear all the time, that Parkinson's is rare.
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  Rare. Not even close.
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  It's actually the fastest growing neurological condition
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  in the world. That's right, it's going faster
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  than Alzheimer's. So no, I'm not some Unicorn with
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  a shaky walk. There are millions of us out
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  here. So today we're going to be
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  busting some of the biggest myths about Parkinson's, the
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  ones that they don't usually talk about.
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  You know, some will make you laugh, some might sting a little
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  and some are just flat out wrong.
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  So stick with me till the till the very end.
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  Because at the end, I'm going to drop today's Bryce ISM, and it's
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  one that you want to remember the next time someone throws one
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  of these crazy myths at you. Welcome to Living with
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  Parkinson's, the good, the bad, and the reality.
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  Real talk. Real life.
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  Real community with Bryce Perry. Let's begin.
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  Hey, I'm Bryce and welcome to living with Parkinson's, The
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  good, the bad, and the reality. You know, I was 40 years old and
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  when I got diagnosed, and now 15 years later, I'm still just
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  trying to figure this thing out. Now, this podcast isn't about
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  pretending that everything's fine.
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  It's about being real. The winds, the wobbles, and the
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  weird stuff in between. So don't just sit back and
• 1:17
  watch. Hit subscribe and be a part of
• 1:20
  this around here. We laugh, we vent, and we figure
• 1:22
  it out together. And if you've already
• 1:24
  subscribed, thank you for showing up again.
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  You are the reason why I keep doing this.
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  But OK, let's dive into these myths.
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  And let's start with that whole idea that Parkinson's is rare,
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  OK? Nearly 10 million people
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  worldwide are living with it. In Canada alone, that's over
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  100,000. And that's not rare.
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  That's like a Tuesday at Costco. Now, the danger of calling it
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  rare is it makes people think it's not urgent, like it's some
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  fringe thing, but it's in every community.
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  You probably know someone who has it, even if they haven't
• 2:00
  told you. So here's your quick action.
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  Drop a comment right now. Not rare, so we can set the
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  record straight. Let's just hammer this out.
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  This is not rare. And this one, here's one that
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  gets under my skin. People think Parkinson's is
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  caused by bad lifestyle choices. Do you know how many times I've
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  been asked like, well, what did you do?
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  Did you do something to 'cause this or like, did your parents
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  do something to 'cause this to? Like when you're in the womb,
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  did your, did your mother live clean?
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  Like, like what? Of course I love my hey, mom, I
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  love you. And like, it's like I've been to
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  the wrong food or skipped too many workouts.
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  They're almost implying that now we don't know exactly what
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  causes Parkinson's. It's like a mix of genetics and
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  environment. Now it's doesn't matter if I ate
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  my broccoli as a kid. And when someone suggests it's
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  your fault, flip it with humor. I usually say if chocolate and
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  coffee cause Parkinson's in the entire country would be shaking
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  right along with me. My coffee, my M&M's, peanut that
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  is. OK, so here is your comment.
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  Check in. What's the craziest thing that
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  you've been blamed for when it comes to Parkinson's?
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  Type it down below. Now Speaking of blame, let's
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  talk about stress. Now I've had people tell me that
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  if you just relaxed more, you wouldn't have Parkinson's or it
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  wouldn't show up. Really.
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  So I should meditate my dopamine back into existence?
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  Well, wouldn't that be nice? Stress doesn't cause
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  Parkinson's. It can make symptoms worse, for
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  sure, absolutely. But it's not the reason that we
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  have it. And here's the tip, when people
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  bring this up, remind them that stress doesn't 'cause it, but
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  laughter definitely will ease it.
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  So if you really want to help me, don't tell me to relax, tell
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  me a joke. If you're nodding along with
• 3:51
  this, learning something or maybe even laughing, make sure
• 3:53
  that you hit that subscribe button and give this thing, this
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  video, a like on this podcast because we've got a community
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  here that gets it. And I don't want you to miss out
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  on anything. All right, here's another one
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  that drives me nuts. This idea that once you're
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  diagnosed there's nothing you can do wrong.
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  I am proof of that. I'm still here, still laughing,
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  still living 15 years in, on my third five years cycle of like 5
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  years until it's not going to be good anymore.
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  And I'm on my third one so. And I'm heading to #4 exercise,
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  medication, staying social, they make a huge difference.
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  Even the small things, stretching, walking, moving a
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  little everyday. When someone says there is
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  nothing you can do, tell them that.
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  Tell them what you are doing. Share 1 positive step.
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  It will help your own narrative. OK, so if you did something
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  today to fight Parkinson's, even if it was tiny, but I did down
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  below, put it in the comments. I did.
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  Let's cheer each other on. And while we're at it, let's
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  tackle medication. You know, some people think it's
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  like Tylenol for a headache. Take it and poof, symptoms gone.
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  No levonopa helps, but it's not perfect and some days it works
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  great and other days I feel like Clark tent stuck in molasses.
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  You know, it's just one of those things when people say, but
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  you're on medication, shouldn't you be fine?
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  I just smile and say, you wouldn't tell a diabetic insulin
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  fixes everything, would you? And that usually gets them
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  thinking, here's one that's even sneakier, but it matters.
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  People think Parkinson's symptoms are the same every day
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  and all the Parkinson's all the Parkins out there said no way,
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  no way in the comments. Not a chance.
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  Not a chance if you anyway. It's not even close.
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  Parkinson's is a roller coaster. One day I feel decent, the next
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  day I can barely move. Sometimes mornings are OK, other
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  times they are brutal. And when people say you were
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  fine yesterday him, no, I don't mean hit them, hit them with I
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  mean you want to hit them. I want to hit them when they
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  keep saying that. But anyway, hit them with this
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  line. Parkinson's didn't Parkinson's
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  didn't check my calendar before it showed up today.
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  So let's make this interactive. If you ever had symptoms
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  surprise you, like symptoms surprise you out of nowhere
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  type, out of nowhere in the comments, you know, many, many
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  people are reading the comments and people are just scanning
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  this is they read the comments probably more than they watch
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  me. And so, you know, when you put
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  things in there like like out of nowhere, right, they start
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  feeling less alone because trust me, people are on here right now
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  searching for answers on why they're some symptoms of theirs
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  are coming and going. So if you want to help me help
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  them, just that put that up in the comments.
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  It'll help. OK, moving along.
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  Let's talk about the myth that care partners always know
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  exactly what to do and never struggle.
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  You know, people assume Carmen was given an instruction manual
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  the day I was diagnosed or the day when we got together.
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  Like, she's supposed to be strong 24/7, never complain, and
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  always have the right answer. But the truth, she's figuring it
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  out day by day right alongside me.
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  And I want you to hear it from her.
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  So here's Carmen's care partner Corner, and here's what she told
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  me to say. Hi everyone.
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  It's Carmen. Let me tell you about one of
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  those moments when I really didn't know what to do.
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  A couple of years ago, Bryce froze in the middle of a busy
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  grocery store aisle. People were walking around us,
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  carts bumping by. And I just stood there thinking,
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  like, what do I do? Do I push him?
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  Do I pull him? Do I yell at the lettuce to move
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  out of the way? She's got my sense of humor.
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  I don't know. And honestly, she's I didn't
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  know. And honestly, in that moment, I
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  panicked a little. But then I remembered something
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  simple. Just pause, breathe, and let him
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  work through it. And eventually he did.
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  That's the thing, care partners don't get a manual.
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  We learn on the job and yes, we get frustrated and yes,
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  sometimes we feel helpless and yes, sometimes we want to punch
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  a wall. But it's OK to admit that.
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  So if you're a care partner listening, know this, you don't
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  have to be perfect. You just have to be present and
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  don't forget to take care of yourself too.
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  That's not selfish, it's survival.
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  Wow, you see what I mean? That's the real side of
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  Parkinson's that people don't see.
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  It's not just me going through it, it's both of us.
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  And if you're a care partner watching, I want you to just put
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  this in the comments, but just type.
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  I'm still learning. Still learning because all of us
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  are still learning. Aren't we?
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  OK, let's wrap this up with a little lighter one because this
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  myth that people with Parkinson's can't have fun.
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  Have you ever heard that one? People with Parkinson's can't
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  have fun? Like it's over.
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  I don't know who came up with that, but they're but they've
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  clearly never seen me try to text with a tremor.
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  You know, once I tried sending I'll be late.
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  And what actually sent was like a rock and a frog, a pizza
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  dinosaur and a dancing lady. You know, my buddy thought I was
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  inviting them to a scavenger hunt or something worse.
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  So yeah, Parkinson's changes how you do things, but it doesn't
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  erase fun. In fact, sometimes it makes it.
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  Sometimes it makes for really funny stories.
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  And isn't that something that could make you feel a little bit
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  lighter today? OK, you've made it this far.
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  Here's today's Bryce ISM for you.
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  And I teased it earlier. But with Parkinson's, the
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  biggest myth is that life stops. The fact is, life just changes
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  its rhythm. And it's just, and it's up to us
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  to keep dancing to our new rhythm.
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  OK, now it's your turn. Which of these myths have you
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  heard before? Or better yet, what's the
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  weirdest or funniest myth that you've been told about
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  Parkinson's or asked about Parkinson's?
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  Drop it in the comments below. I want to hear it.
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  And others do. And don't forget, I read and
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  reply to every comment. Now.
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  Don't, don't, don't get mad at me if it takes me a day to get
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  back because I mean, we have a lot of people commenting, but I
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  promise you, I will get to you. And you know what?
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  Don't just lurk around here. If you're just lurking, hit
• 10:20
  subscribe if you haven't already.
• 10:22
  This is a community. It's not just a channel.
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  And I'd love for you to be a part of it.
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  And if you're ready for more, check out the link in the
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  description for the inner circle.
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  That's where we go deeper. We share our wins, our wobbles
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  in a private supportive community with each other.
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  Until next time, I want you to keep showing up.
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  I want you to keep being real and you keep doing life today.