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Living With Dyskinesia: The Side Effect That Stole the Spotlight · 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.
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. Picture this.
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You're reaching for your morning coffee.
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You're trying to start your day when suddenly your hand decides
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it's auditioning for Dancing With the Stars.
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That's my daily reality with Parkinson's and dyskinesia.
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It's unpredictable, it's awkward, and sometimes it's kind
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of funny, honestly. At least when it's not spilling
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coffee all over my shirt. Now, if you're living with
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Parkinson's, I bet you know that mix of embarrassment and
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frustration. Especially when those movements
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show up in public. And maybe you worry about what
1:02
people are thinking, or you find yourself hiding at home more
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than you'd like to. Or maybe you're just wondering
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if this is what your future holds.
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If any of that sounds familiar, you're definitely not alone.
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Stay with me for this episode, because I'm sharing the raw
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truth about daily life with dyskinesia.
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The good, the bad, and yes, sometimes the downright
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ridiculousness. Plus, I'll walk you through the
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32nd confident reset that I use to turn awkward moments into
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I've got this moments. And if you stick around till the
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end, I'll tell you the story that completely changed how I
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felt while being seen with dyskinesia in public.
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And let's face this together, 1 unpredictable day at a time.
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Hey everyone, I'm Bryce. And if you've caught that
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opening, yeah, that's my daily reality with Parkinson's
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Dyskinesia. Today, I'm breaking down exactly
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what dyskinesia is, why it happens, and most importantly,
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the 32nd confidence reset that I promised you.
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Plus, stick around because the story I'm sharing at the end, it
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completely changed how I show up in public when these moments
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happen. Now, let's just dive into these.
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Let's now, let's just now let's just dive in.
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OK, let's start with the basics. Dyskinesia, what it is.
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A lot of people think it's just another word for tremor, but
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it's not. Tremor is part of Parkinson's
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itself, and dyskinesia it. It's those extra involuntary
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movements that show up years after being on medication,
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especially levanopa. It's your hand waving, your foot
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tapping, your whole body doing the cha cha without asking your
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permission. Sometimes it's subtle, maybe a
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wiggle or a twitch, and sometimes it's like you've got
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your own backup dancers and they're determined to steal the
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show. Now, why does it happen?
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Well, here's the quick science. It's not Parkinson's itself
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causing dyskinesia, but the way your brain processes dopamine
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after years of medication. The meds wear off, they kick in,
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they wear off again, and your brains like, what are we doing
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here? So it starts firing off signals
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in all directions and suddenly you're doing a one person flash
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mob in the kitchen. But here's where I want to clear
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up a massive myth, and one I hear all the time in the
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Parkinson's community. A lot of us have been told don't
3:18
start levodopa too soon or you'll get dyskinesia.
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And a lot of people try to avoid going on a levodopa for the
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longest amount of time. But here's what the research and
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my own journey actually show. Dyskinesia usually pops up after
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several years on levodopa, sometimes 5, sometimes 10, and
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for some people it barely happens at all.
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It's not just about how long you've been taking it, it
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depends on on your dose, how often you take it, your age,
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your body, and even your genes. Now here's the big kicker.
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Waiting as long as you can to start levodopa doesn't really
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stop levodeskinesia. It just makes you put up with
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more stiffness, slowness, and frustration than you need to.
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Actually. Actually, sometimes in those big
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swings of taking a ton of leviope at once or letting
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yourself go too long between doses can actually make this
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dyskinesia worse. Although I always say meds on
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time every time, those gaps can actually make dyskinesia worse.
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Those big upswings, right? You're on, you're off, you're
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on, you're off, you're on, you're off.
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I'm telling you, it will make dyskinesia worse.
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So what really works? Well, here's the bottom line.
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Even finding that sweet spot with your doctor, Enough
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levodopa to help you live well and move through the day, but
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not so much like you're riding a roller coaster.
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And let me tell you, finding that balance is no small thing.
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You know, after about a year of taking my doses, experimenting,
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and honestly getting a bit frustrated, I finally felt like
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we found it. I actually felt good, like like
5:01
the old Bryce again. And you know, to be honest with
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you, I probably even felt better than I had for a few years, even
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pre diagnosis, right? And for a while it was like I I
5:11
thought, Oh my God, I'm actually get my life back.
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Like this isn't a big deal. Like this is going to be fine.
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But then in my next appointment, my movement disorder specialist,
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he smiled and he said, excellent, we found what works.
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And now I'm going to cut you back a little.
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Oh my God, I was so furious. I was frustrated and honestly, I
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was just completely mad. Why couldn't I keep feeling
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great? That's when my doctor told me he
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that's what he said, I want you to feel good, not great.
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And I'm like, what? Come on.
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And he said, because I want to keep you on the lowest possible
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dose. That still helps you, right?
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Still helps you get through the day so we can hopefully keep
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these side effects like dyskinesia away for as long as
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possible. Now that was super hard to hear
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at the time, right? But now I get it 15 years later.
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I get it 15 years ago. It'll be September coming up
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here. 15 years ago. I was pissed at my I'm like,
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this isn't fair. And I was mad.
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I'm thinking, what is this guy doing?
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Why does he what does he have against me?
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Why does he not want me to feel great?
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What has he got? What has he got against me?
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15 years later now and I think about where I'm at in my journey
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and my dyskinesia. Do I have dyskinesia?
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Absolutely. My dyskinesia is like my hand.
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So my hand likes to do its own thing.
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I'm like, I'm always, I'm continually rolling stuff in my
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hands. Like, I mean, I get the rolling
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tremor, like like rolling pills, but miners like I'm just kind of
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doing stuff and, and I'm waving my hands a lot.
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So I definitely get it, but I don't get it as badly as I
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thought. And that's 15 years I've been on
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levodopa. So if that's you today and
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you're sitting here and maybe you're got diagnosed or you're
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thinking you're being diagnosed or you're trying to hold back,
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you're trying to hold back and yet you're struggling day-to-day
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today. Don't, don't struggle, right?
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Just get enough in you so that your day isn't challenged, that
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you can, you can Live Today, right?
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And, and, and that's what it's all about, right?
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It's, it's, it's finding that sweet spot, not chasing perfect,
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but just making sure that you're getting the most out of your
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medication for the longest possible time.
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And let me tell you again, like I said, my dyskinesia isn't as
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dramatic as some people's, but it still shows up.
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And when it does, it's always, always the most random moments.
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I remember the first time I really noticed it, right?
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I was at a meeting at work, and I was trying to my best to look
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calm and professional. And suddenly my legs started
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bouncing so fast. Like it was bouncing so fast
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that I could have, I could have powered a sewing machine, right?
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Everyone in the room was trying to pretend not to notice.
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And me, I just tried to look like I was just really
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enthusiastic about the quarterly budget.
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Here's the thing, it's awkward. You feel like everybody's
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watching you. And you know, the truth is most
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people probably aren't. I used to feel self-conscious,
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like maybe I should just stay home on days when the movements
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weren't stronger. But if you do that, then you're
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letting Parkinson's steal away more than just your dopamine.
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You're letting it take away the days of your life.
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And honestly, sometimes I wish there was like an app like this
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app that would track like my best wiggle moments, right?
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And I had these like dreams that maybe had to go viral, like
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middle-aged man invents new TikTok dance like the levodopa
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shuffle, right? Like, So what do you do?
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Like, it's crazy, right? What do you do?
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How do you handle the stairs? The embarrassment, the urge to
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apologize for your own body? Like, do you ever get that?
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Do you ever like just want to like you're looking and your,
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your, your body's flailing or it's doing these crazy things
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and, and there's people beside you around you and you're like,
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literally apologizing. Like, I'm so sorry about this.
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This is just my levodopa or this is just my, you know,
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Parkinson's. Like really, we're apologizing
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to people for our body. Like, is that like a little bit
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insane? A little bit?
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I don't know. I think it is.
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I think it's a little crazy, you know, But here's the thing.
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For me, it comes down to what I call a confidence reset.
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And here is that 32nd trick that I was telling you about.
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When I feel those moments ramping up, excuse me,
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especially in public, I pause. I have to pause and I can't tell
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you enough. You take a pause, right?
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I literally stopped for just a moment, take a deep breath in,
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and I tell myself this is just part of my daily reality and it
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doesn't define me. And I'm not here to perform for
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anybody else. And then sometimes I even had a
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little joke like, hey, you know what, you should see my moves on
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a good day. The truth is, when I stop trying
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to hide it or overthink it, people react way better than I
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expect. You know, most folks are.
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They're either curious or they're just to be.
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To be honest, they're either curious or they're just too busy
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with their own lives to even care.
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And the people that do care, well, they're usually the ones
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who matter. The ones who want to understand
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and not judge. Hey, if any of this is sounding
10:16
familiar or if you're finding these tips helpful, do me a
10:19
favor, hit that subscribe button.
10:22
I drop episodes every week. You know, all the real life ups
10:27
and downs and surprises with Parkinson's so they to so you
10:30
don't miss anything that you might help you or might help
10:34
someone else that you love. Just subscribe, come along for
10:36
the ride. But here's a couple more real
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life tools that I use, OK, I try to plan big activities for times
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when I know my meds are are going to be working the best,
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right? I don't obsess over it because
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life doesn't always stick to a schedule.
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And that's something that you're going to have to get used to.
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You know, life doesn't stick to a schedule, neither does our
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bodies have the time, right? But everything I do like even
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right now when I'm on filming this or I'm recording the
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podcast, I record it when I know that I'm going to be at my peak
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prime performance, right? And so you just have to like
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plan around it and plan through it.
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I've learned to laugh about it with the people that are close
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to me. You know, my wife's even started
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like giving me like a giggle meter, right?
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A giggle meter. And it's a score, you know, like
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out of 10 sometimes. And spoiler alert, I'm still
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waiting for the perfect 10. And that bothers me because I'm
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a little competitive. So that's the way it is.
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And here's here's another tip that that, that you should maybe
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think about that I'll give you. And, and this is what I do if,
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if, if I'm out in public, I always try to find a spot to sit
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or to lean right. So if I need to, right?
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And I focus on whatever I can control.
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If someone asks you know me about it, I just explained to
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them. I said, oh, that's part of my
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Parkinson's. And sometimes my meds make me a
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little extra wiggly, right? A little extra wiggly today.
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That's all there is to it. But this is something I want you
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to hear. And I want you to listen this
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very carefully. I know this might sound easier
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said than done, and you might be thinking that right now.
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Sure, easier said than done, and I get that.
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Trust me. I spent five years after my
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diagnosis trying to hide everything, right?
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If you're in that spot right now, it's OK.
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I've been there. And honestly, here's the thing.
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Honestly, I don't want you to waste five years like I did.
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I don't want you to waste one year, right?
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I don't want you to waste one day.
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Learn from me, take small steps, start wherever you are, and give
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yourself some grace. Dyskinesia isn't your fault.
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It's not something that you can just try harder to control, and
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it doesn't mean you're doing anything wrong.
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It's just a side effect. Yeah, like an annoying side
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effect. But it also means that you're
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still here, you're still moving, and you're still living your
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life. And if you take nothing else
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from this episode, let it be this.
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Don't let dyskinesia make you feel invisible.
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You deserve to show up, take up space, and keep living your
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story, even if your body decides to throw a few little surprise
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dance moves in and along the way.
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OK, here's the story that I promised you in the beginning.
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This totally changed everything for me.
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So Carmen and I were out for dinner, right?
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And we're out with dinner with friends and we're just having a
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great night. It's a great night.
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I'm feeling good, everything's going well, meds are working
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great. Out of nowhere, completely
13:27
nowhere, my hand and probably honestly my entire arm starts
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going wild at the table. And before I can even get
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self-conscious about it, Carmen just looks at me and she says,
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she says, So are you conducting your imaginary orchestra again
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or are you just trying to be the center of attention?
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And the whole table just cracked up.
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I mean like laugh, like really laughed.
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It was like one of those deep belly break the awkwardness kind
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of laughs. But here's the best part.
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It actually opened up a real conversation.
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I got to explain to our friends what was happening and why it
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was happening, and suddenly everyone had a bit more
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understanding and awareness. And that moment, it didn't feel
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like the spotlight was on my Parkinson's anymore.
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It just felt like life. And it made me realize the more
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open I am, the less power dyskinesia has over me.
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The people who matter will always stick around, awkward
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dance moves and all. OK, here's your Brysisms of the
14:26
episode. Your Brysisms with Parkinson's,
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your best dance moves show up when you least expect them.
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So why not just own the spotlight?
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Just do it. Hey, if you can relate to
14:37
anything I've just shared, or if you got your own dyskinesia
14:39
stories tips, drop them in the comments.
14:42
I love to read the comments and I love a conversation and I
14:46
reply to every single comment. And if you're looking for more
14:48
support, encouragement, and real talk about Parkinson's, don't
14:51
forget to subscribe and share with us.
14:53
Share this with somebody who needs it.
14:55
We're all in this together. 1 Unpredictable, simple day at a
14:58
time. So thanks for watching and I'll
15:01
see you in the next episode. Parkinson's may be part of your
15:09
life, but it doesn't get to define it.
15:12
Thanks for listening to Living with Parkinson's, the good, the
15:15
bad, and the Reality. If this episode moved you,
15:19
helped you, or reminded you you're not alone, share it with
15:22
someone who needs to hear it. Want to go deeper?
15:26
The inner circle is waiting monthly Zoom calls, 24/7
15:29
community, and a Direct Line to Bryce.
15:32
You'll find the link in the show notes.
15:34
Until next time, keep showing up and keep doing life today.