Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s Community: The Speech That Changed Everything

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Parkinson’s Community: The Speech That Changed Everything · Living with Parkinson’s | Bryce Perry

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This past weekend, I stood on stage in front of more than 700
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people, and most of them had Parkinson's.
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It was the Parkinson's IQ and U event in Toronto, and it's a
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moment that I will never forget. There was so much emotion, so
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much connection that I knew right then that this wasn't just
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a speech. It was a reminder of why
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community matters and why it matters so much.
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And stick around, because I'm going to share the full keynote
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speech, the same one that moves so many people that day.
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Welcome to Living with Parkinson's, The Good, the Bad,
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and the Reality. Real talk, real life, real
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community with Bryce Perry. Let's begin.
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Hey everyone, welcome back. I'm really glad that you're
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here. And if you're new, my name is
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Bryce and this is Living with Parkinson's, The Good, the Bad,
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and the Reality. And on this channel, we've
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talked honestly about life with Parkinson's, the moments that
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challenge us, and the moments that bring us together.
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Well, last weekend I had the honor of Speaking of Parkinson's
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IQ and U event in Toronto, and that day reminded me so much of
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what Real Connection really looks like.
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It was such an impactful experience that I wanted to
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share it with you exactly. As.
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It as it happened. So instead of just describing
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it, I want to show it to you. Every word, every pause, every
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truth. Because this message wasn't just
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meant for the people in the room, is meant for anyone living
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with Parkinson's or caring for someone who is or is just trying
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to make sense of what this journey is, really looks, really
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looks like. All right.
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Here is the full keynote speech for.
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One second, Can you imagine on a Saturday morning?
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In what? What is this?
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The GTA? In the GTA, 700 people, 700
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people coming together to talk about what I call the silliest,
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the silliest thing that you could ever have diagnosed with
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Parkinson's. Crazy, crazy, crazy.
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But I want you to really get this today, and this is what I
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want you to understand. There's probably some people in
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here, probably 30 to 40 to 50% of you, that this is probably
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your first Parkinson's event that you've ever attended.
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As a matter of fact, I ran into people walking through the
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hallways that it was, they said that first time I've ever gone
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to a Parkinson. Event do.
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You know what that means? It means that last night you
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were laying in bed debating whether or not you should still
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come. It means you almost talked
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yourself out of coming probably a dozen times.
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It means you walked through those doors this morning with
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your heart pounding, wondering if you made a mistake.
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But you're here. And that is the first act of
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rebellion against Parkinson's. I remember my I remember my
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first event. I sat in the back row, arms
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crossed, barely making eye contact with anybody.
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Because going to a Parkinson's event meant admitting that my
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old life was over and meant accepting that everything I
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thought I knew about my future had been erased.
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But here's the thing. Welcome to the club that nobody
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wanted to join. And I say that all the time.
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Welcome to the club that nobody wanted to join.
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But damn, I promise you, we've got the best members you'll ever
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find anywhere on the planet. 15 years ago I was sitting on a
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couch in Jacksonville, FL Yes, I lived in Jacksonville, in
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Florida with no winters. Yes, I moved back to Winnipeg,
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MB winters, but I noticed the twitch in the pinky on my right
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hand and you know, not a tremor, just a twitch and nothing major.
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You know, I knew Parkinson's, my grandmother had Parkinson's.
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But I looked at that finger and I told myself the first of many
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lies. Not me.
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I'm only 38 years old. This cannot be happening to me.
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Two years of tests, doctors telling me that it was carpal
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tunnel, carpal tunnel, stress, overworked, or that I was
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absolutely losing my mind and I was making myself twitch.
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But I knew in my bones, I knew what it was.
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And then one day, after about 10 minutes in a movement disorder
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specialist office, I heard the words that changed my life
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forever. It said, you know you have
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Parkinson's disease and you know what, at that time I was.
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Actually, I I kind of went like. Yes, I was relieved that
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somebody actually believed me, that somebody actually believed
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what I was saying and what I was feeling, what I was going
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through. Then I got to my car and
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complete terror kicked in. It was like a wave crashing over
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me, drowning me, because now what?
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Now what now? I had to tell my family.
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What am I going to tell my family now?
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I had to figure out how old to live with this, and I had to
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face the fact that the future I'd imagined was gone.
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So I did what a lot of you do. I hit.
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I hit hard. For years.
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For 56789 years at the time I was like a motivation.
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What do you call a motivational speaker?
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I was a motivational speaker that couldn't be motivated off
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the couch. I was a glasses half full guy
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with a bone dry glass totally foreign to me.
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I cancelled speaking engagements.
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I stopped going out with friends.
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I stopped smiling. Every laugh, every tear, every
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single beautiful, messy, imperfect moment of being alive
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was gone. But I want you to hear something
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this morning. This isn't about me.
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You see, there's, as I said, there's 700 people here today
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and everybody has a story. Everybody's been Not everybody,
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but most of us. Most people, as a matter of
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fact, if you have Parkinson's, raise your arms, raise your
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hands and just look around. If you're a care partner of
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somebody who loves somebody has Parkinson's, raise your hand.
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Keep your hands up, everybody keep your hands up.
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Now look around. There's 700 of you all here
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feeling and experiencing the same thing.
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And you have a story, and I have a story, and you've got a
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probably a better story than I do.
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Maybe you're here this morning. You got diagnosed last month,
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and you're still in that foggy space between denial and
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acceptance. Or maybe you've been living with
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this thing for over 20 years and you're tired.
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God, you are so tired. That was close.
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And you wonder how you know, How are you going to keep going?
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And maybe you're a care partner who's holding somebody and
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someone you love with everything that you have.
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And some nights you cry in the shower because you don't know
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how much more you can take. This is real life.
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And I see you, all of you. But I need you to hear this.
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Your story is not over. It's not even close, Not even
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close to being over. For those of you here for the
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first time, I know you're scared.
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I know you're freaking out. I know the room felt too bright
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when you walked in. I know you spent weeks or
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months, even maybe even days going over Google, Googling your
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symptoms 24 hours a day, becoming a Google expert, trying
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to figure out what's going on with you as scaring yourself
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half to death with worst case scenarios.
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But by walking through these doors this morning, you did
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something extraordinary. You took the first step from
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isolation into community, from darkness and delight, from
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merely surviving into the possibility, just the thinnest,
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most fragile possibility of living again.
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And that possibility, I want you to hold on to that, because
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that's everything to us. Now, I want to tell you
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something that nobody tells you when you get diagnosed.
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Parkinson's is a theist. It steals your movement.
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The way you used to walk into a room with confidence, the way
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you used to dance, the way you used to hold hold your hands.
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You used to effortly ever. The way you used your hands to
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button up a freaking shirt or hold a cup of coffee.
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It stole that. It steals your independence,
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asking for you, having to ask for help when you spent the
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whole life being the one who helps others.
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It steals moments you thought you'd have, grandchildren you
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can't chase, careers cut. Short and trips.
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That you'll never take. It steals your invisibility
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because now people notice you. They notice the tremor, they
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notice you moving slowly, they notice and sometimes they stare
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and it makes you want to disappear.
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But here's what nobody tells you about that being part of this
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club. It doesn't get to steal your joy
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unless you let it. It doesn't get to steal your
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relationships unless you push people away.
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It doesn't get to steal your purpose unless you decide that
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you're done. It doesn't get to steal your
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laughter, your love, or your light unless you hand them over.
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And most importantly, it doesn't get to steal your choice.
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Because every single morning you open your eyes and you have a
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choice. Am I going to survive today or
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am I going to Live Today? Surviving is dying slowly.
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Living is fighting back. Let me explain the difference.
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Surviving is waking up and counting your pills before you
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count your blessings. Living is waking up and deciding
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that today, even if it's a bad day, that you're going to find
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one good thing that's going to make you feel alive.
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Surviving is avoiding mirrors because you don't recognize the
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person staring back at you anymore.
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Living is looking in that mirror.
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You're really looking in that mirror and saying I see you.
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You're different now, you're struggling, but you're still
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here and you're still worthy and you still matter.
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Surviving is saying no to everything because you're
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afraid. Afraid of how you look, afraid
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of how it will feel and what people will think.
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Living is saying yes to one thing, just one thing that
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reminds you of who you are beyond this disease.
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Surviving is isolation. Living is showing up, showing up
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to events like this, to support groups, to a cup of coffee with
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friends who really get it. Surviving is coping.
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Living is thriving. And you, yeah, you, you're
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sitting there right now and you're wondering if you can do
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this, If you deserve to thrive. I know you are.
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I've been there. But here's the truth.
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Parkinson's doesn't want you to know.
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This is exactly what Parkinson's doesn't want you to know.
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That we are not just people living.
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Listen to. This really?
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Tough. Really tough.
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Yeah, really tough. Listen, listen to stuff.
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We are not people, just people living with Parkinson's.
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We are people living, not just people living with Parkinson's.
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I hate that we're people living. Living with tremors that don't
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define us, living with challenges that don't defeat us,
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and living with limitations that don't limit our capacity for
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love or for connection or for joy.
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We are parents, we're grandparents, and we're friends.
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We're artists, accountants, and advocates.
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We're fighters. We're dreamers and warriors who
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refuse to give up. We are people who wake up every
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day and we face something that most people can't even imagine.
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And we do it and we do it anyway.
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You did it today. We keep going anyway and we keep
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showing up anyway. And that, that, that is not just
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living with Parkinson's. That is living period.
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Now that deserves an applause. I don't.
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Nobody can miss that one. I used to think that living with
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Parkinson's was a death. When I got diagnosed, I thought
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it was a death sentence, a complete death sentence.
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But now I realized it's a perspective, a perspective
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shift. It forced me to slow down and
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notice sun rises that I used to sleep through.
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Can't even imagine. I do that now.
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It's introduced me to some of the strongest, some of the
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funniest and most resilient people that I've ever met.
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It's taught me that vulnerability isn't weakness,
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it's the birth place of real connection.
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It's shown me that the best moments in best in life aren't
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the perfect ones. They're the ones where you where
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you're just real, where you're honest, where you show up
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exactly as you are and you let people see you.
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This club we're in, and we didn't choose it, not one of us.
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I mean, we'd be flipping nuts if we chose this club, but we're in
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it together and there's power in that and there's hope in that.
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There is life in that. So the person who's here for the
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first time, thank you. Thank you for being brave enough
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to show up. You didn't have you showed up
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and you know you don't have it all figured out.
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You don't have to. You don't have to be strong
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every second, but you're here, and that's the hardest part.
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Everything else we can figure out together.
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To the person who's been fighting for years, thank you
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for still being here, for still showing up, for still fighting
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on days that you didn't think you could.
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You were proof that this disease does not get the final say.
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You are the hope with skin for everyone who is terrified of
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what comes next to the care partners in the room.
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You are the heroes. Not the Cape, not the Cape
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wearing kind. The real kind.
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The kind who show up day after day, who sacrifice their own
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needs, who love someone through their hardest moments.
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Please hear me when I say this. Taking care of yourself isn't
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selfish, it's survival. And you need to survive because
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we cannot do it without you. Yeah, I'm just waiting for that.
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So here's my challenge for you today.
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This is what I want you to take with you when you walk out of
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this room today. Stop surviving and start living.
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That doesn't mean pretending everything's OK.
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It's not some toxic positivity or fake smiles.
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It means acknowledging that this is hard.
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This is really, really fucking hard, but you choose to fight
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anyway. It means showing up to events
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like this, to support groups, to moments that scare you.
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It means to asking for help even when pride makes you not want to
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do it and makes you want to do it alone.
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It means trying new things even when you even when that might
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mean it brings you brutally brings you to things that are
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going to make you be so brutally honest with yourself.
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It means being brutally honest, like I don't know what it had
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there with people who love you, who love about how you're really
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doing. It means looking for light
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without ignoring the darkness. It means deciding that
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Parkinson's may be part of your story, but it's not the whole
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story. It's not even the best part.
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The best part is what you do next.
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I want you to look around the room one more time.
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Look around the room. 700 people in this room, really look at
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them. There's 700 stories of
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heartbreak, of hope, of really bad days and surprisingly
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beautiful moments of falling down, of getting back up, of
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losing things and finding new things, of surviving and
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thriving. You're not alone in this fight.
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You never were, and you'll never be again.
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Because there's a movement right now.
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Not just people with a movement disorder, a movement of people
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who refuse to be invisible. We are people who will fight to
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live not just to exist, not just to get by, but to truly, deeply,
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messily get involved in this beautiful life.
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We are people who will fight to be seen not as our symptoms, not
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as our limitations, but as a whole, worthy, valuable human
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being who actually matters. Because you do.
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We will people. We will be people who will fight
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to be heard, our voices, our stories, our truth about it's
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really like to walk this path. And when we stand together, when
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we show up for each other, and when we refuse to let this, this
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disease, write our ending. That's.
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When we become unstoppable. So when you leave here today, I
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want you to remember one thing. You have Parkinson's.
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But Parkinson's does not have you.
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It doesn't get to decide how you spend the day.
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It doesn't get to determine your worth, and it doesn't get to rob
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you of joy unless you hand it over.
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Everybody say don't hand it over.
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Little bit louder. That was weak.
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Don't hand it over. Don't give it up.
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Don't hand it over. Come on now.
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Don't hand it over. Don't give it up.
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Live. Live Today, not tomorrow.
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Live. Live Today, not tomorrow, not
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when you feel better, not when the medications are working
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perfectly, not when you're feeling perfectly balanced, and
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not when you say the symptoms will feel better.
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Now, now, in this moment, in every moment, do not miss this.
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Find one thing that makes you smile.
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You can just Remember Me. Call one friend who gets it.
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Take one walk with somebody in the sunshine.
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Join one support group. Try one new thing.
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Learn something today. Share one honest conversation.
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Live 1 moment fully. Because this is the club that
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nobody wants to join. But here we are.
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We're here. And since we're here, we might
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as well make it count. We might as well show up.
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And we might as well show up for each other.
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We might as well choose life over existence, connection over
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isolation, hope over despair, fighting over surrendering.
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So welcome to the club. Thank you for being here.
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Thank you for showing up. Thank you for fighting.
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Thank you for living. We are people living, are we
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not? All right.
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So with that, welcome to Parkinson's IT and you, the GTA.
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We're excited you're here. You better be ready to slap in.
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We have some great programming for you today.
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All right. Thank you.
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Wow, I hope you enjoyed that as much as I did.
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As much. As I enjoyed that day and I have
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something really special for you, it's time for Carmen's care
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partner Corner. And without further ado, here's
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Carmen. Well, hi everyone.
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I'm Carmen. Bryce has asked me to come and
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do this behind the camera or stop being behind the camera and
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get in front of it. Not my comfort zone, but
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hopefully everyone enjoys it. PDIQ with Bryce speaking in his
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speech that day. Watching Bryce speak that day
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was emotional. Emotional in a way I didn't
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expect. I've seen him prepare, rehearse,
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edit and rework his words. But this time, standing in that
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audience, it wasn't just about him giving a talk, it was about
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all of us being part of something bigger.
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When he said welcome to the club, nobody wanted to join.
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There was this wave across the room, people nodding, tearing
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up, holding hands. It was powerful because everyone
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there understood. That's the thing about
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community. It gives you permission to
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breathe again, to feel seen, understood and accepted.
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And for me, as a care partner, that moment meant a lot.
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Because sometimes people think community is just for the person
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living with Parkinson's. The truth is, care partners need
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it too. We need people who get what it's
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like to worry, to advocate, to juggle everything and still
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smile. We need spaces where we can
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talk, learn, laugh, and even fall apart a little and know
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someone will always have our back.
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When I saw that day, what I saw that day wasn't just a room full
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of people with Parkinson's, it was a room full of families,
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teams, partners, friends, and every single person there had
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something to offer. That's what community really is.
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Not a group you have to join, but a family that welcomes you
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when you're ready. So if you're a care partner
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watching this, please know that your role doesn't end with
24:58
support. You belong in this community
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too, because we can't do this alone.
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And the good news is, we don't have to.
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Oh, that was. Awesome.
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I'm thankful so much for Carmen. She did not.
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She doesn't like coming in front of the camera.
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So that's a that's a big deal. So thank you for that.
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That was awesome. And you know, that's exactly
25:19
what I felt that day, that none of us are in this alone.
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So whether you're living with Parkinson's or you're walking
25:24
beside someone who is, we're all a part of the same club and the
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more we show up for each other, the stronger that we will
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become. Now, if this message in the
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speech connected with you or if you were there that day, tell me
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the comments. What part hit you the most?
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And if you couldn't make it, what would you ask if you got to
25:45
attend the Parkinson's IQ and U event?
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And if you want to keep the conversation going and connect
25:52
with others who truly get it, then join the Inner Circle
25:54
community. There's a link in the
25:56
description below. And it's a safe, supportive
25:58
space for people living with Parkinson's and care partners.
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All right, so you know, I wasn't leaving the episode without
26:05
giving you one of these. So here is today's Bryce ISM.
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All right with Parkinson's courage isn't about being
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fearless. It's about being seen and until
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next time please keep showing U, please keep being real and you
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just keep doing life. Today.