Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s and the Future: Are We on the Brink of a Breakthrough?
Transcript
- 0:01They told him he had five good years left.
- 0:04That was 15 years ago. He's still standing, still
- 0:08speaking, still living. This is living with Parkinson's,
- 0:12The good, the bad, and the reality.
- 0:15A podcast about what happens when life throws you something
- 0:18incurable and you fight back anyway.
- 0:21Hosted by Bryce Perry, diagnosed at 4015.
- 0:25Years into the battle, This is the truth behind the tremor.
- 0:29Let's begin. What if I told you that right
- 0:34now, as you watch this, scientists are growing brain
- 0:37cells in a dish, hoping to use them to treat Parkinson's?
- 0:41Sounds like sci-fi. Well, it's happening.
- 0:44And later in this episode, I'm going to share what happened
- 0:47when I spoke with the team at Blue Rock Therapeutics.
- 0:49And trust me, you'll want to hear this.
- 0:52So are we on the brink of a real breakthrough?
- 0:54Let's find out. Hey everyone, and welcome back
- 0:58to the channel. I want to thank my loyal viewers
- 1:01for coming back. And if you're new here, I'm
- 1:02Bryce. And this is living with
- 1:04Parkinson's, the good, the bad and the reality.
- 1:05And this channel is all about providing strength, hope and
- 1:08support the people living with Parkinson's and those who care
- 1:11for them. Well, today we're taking a look
- 1:13at the future, what's real, what's hype, and what actually
- 1:16gives us hope. And if you're wondering why does
- 1:18this matter to me, it's simple. Like you, I want to know what
- 1:22brighter days are coming. And that's why I stay up to date
- 1:25and I know what I'm and I know and why I'm sharing this with
- 1:28you. So let's get right into this.
- 1:31So let's start with where we are right now.
- 1:34Now for most of us, the front, the frontline treatments are
- 1:37medications like levodopa, dopamine agonist and maybe a
- 1:40patch here or there. And if you're lucky, you haven't
- 1:43dropped the pill on the floor this week.
- 1:45And then there's deep brain stimulation, or DBS, a bit like
- 1:49having, a bit like having a pacemaker for your brain.
- 1:52But as effective as these can be, they're not perfect.
- 1:55Side effects wearing off, awkward timing.
- 2:00You know, I once set an alarm for my midday pills and I
- 2:02accidentally triggered my neighbors.
- 2:03Alexa, She got her weather report and I missed my dose.
- 2:06Welcome to Parkinson's in 2025. Now here's where things get
- 2:12exciting. Let's talk about the new
- 2:14frontiers, because there's a lot happening.
- 2:18DBS technology has come a long way.
- 2:20The latest versions are smaller, rechargeable and even adaptive,
- 2:24meaning they can sense your symptoms and adjust themselves
- 2:27in real time. So picture this in the not so
- 2:30distant future, your brain device could work like a
- 2:33thermostat, cranking up support when you need it and backing it
- 2:37off when you don't. And yes, I still live in fear of
- 2:40accidentally charging changing my channel with my brain remote.
- 2:44Imagine explaining that one at a dinner.
- 2:45At a dinner party, it's it's wild, it's different, I mean,
- 2:49but where is it going? It's amazing.
- 2:50And then there's gene therapy. Now this isn't about giving you
- 2:55a superhero powers, unfortunately, but it's about
- 2:57sending microscopic instructions to your brain cells and teaching
- 3:01them how to make more dopamine or protect what you've got.
- 3:04And some early trials have shown promise, but it's still early
- 3:07days. The idea that a one time
- 3:10infusion or injection could make a real difference, Well, to me,
- 3:14that's something to really watch.
- 3:16Now that's 2, that's two already.
- 3:18And now what about this one? Here's where I get goosebumps.
- 3:22OK, stem cell therapy. Now, recently I had an
- 3:26incredible chance to speak directly with the team at Blue
- 3:29Rock Therapeutics. And if you don't know the name,
- 3:32you will. Trust me, you will.
- 3:34Because they're working on litter.
- 3:35They're working on literally growing new dopamine producing
- 3:38cells from stem cells and the goal of transplanting them into
- 3:42people with Parkinson's. So I was asked to speak to their
- 3:45employees at their team, at their team convention
- 3:48conference, I guess. And I went into that
- 3:51conversation with cautious optimism.
- 3:53OK. But what I heard blew me away.
- 3:56The staff weren't just quoting statistics.
- 3:58They were talking about people, early trial participants, their
- 4:02families, and the hope that drives their work every single
- 4:04day. One of their scientists looked
- 4:10me right in the eye. OK, and well, it was over Zoom
- 4:13anyway, but, but said this, we're not working on treatments.
- 4:17We're working towards a future where Parkinson's is a different
- 4:20kind of diagnosis. And that, that, that stuck with
- 4:25me. You could, I, I, I could
- 4:28actually, I could feel their passion.
- 4:30You could hear it in their voices.
- 4:32And for the first time in a really long time, I walked away
- 4:35thinking, this isn't just science, it's hope and action.
- 4:42Now let me ask you this. What emerging treatments or
- 4:45breakthroughs give you hope? Have you ever spoken with a
- 4:49researcher or joined a trial or just read something that just
- 4:52made you think, wow, maybe the future really is brighter?
- 4:55Drop a comment below. I read, I read every single one.
- 4:58And your words might be exactly what someone needs to hear
- 5:02today. So let's talk about this.
- 5:06Neuroprotective drugs, right? These aren't just treating
- 5:08symptoms. They're designed to slow the
- 5:10actual project. Project projection progression.
- 5:14Thanks. Parkinson's, The actual
- 5:16progression of Parkinson's, the one that's getting a lot of
- 5:20attention is, is a diabetes medication being trialled for
- 5:23its ability to protect brain cells, Right?
- 5:26We're not there yet, but the idea of stopping Parkinson's is
- 5:29track. Well, that's a moon shot worth
- 5:31writing for, isn't it? I mean, it's incredible.
- 5:35Wearables. Wearables are the new frontier.
- 5:38Sensors, watches, rings, even insoles.
- 5:42They track movement, they track tremors, they track sleep, even
- 5:45falls, and send data to your care team.
- 5:47You know, personally, some days I feel like a cyber dog with all
- 5:51these gadgets I've tried, but it means catching symptoms early.
- 5:54If it means catching symptoms early or, or getting my meds
- 5:57right, then sign me up. You know, one of my favorite
- 6:01sayings is, you know, meds on time every time.
- 6:03So if there's something that's going to help me to do that,
- 6:06then I'm definitely, definitely, definitely going to do that.
- 6:09I was actually having a conversation with somebody this
- 6:13week actually. And there's this new thing
- 6:15coming out and you might have heard it already.
- 6:16And it's, I think it's by from a company called Sense Sensei or
- 6:19Sensei. And it's this, this monitor.
- 6:22And you can put it in your home if you put it in the kitchen or
- 6:25you put it in the, I think 3, three places they said was the
- 6:27actual sweet spot, like the kitchen, the most traffic area
- 6:31and the bathroom. And what it does is it actually
- 6:34can start a you'll see patterns, right?
- 6:37It's just, it's not doing anything.
- 6:38It's just sort of sitting there. But it knows or hears how many
- 6:42times you go to the restroom in a day and you're kind of say,
- 6:44you know, there's a change going on here.
- 6:45Maybe something we should look at.
- 6:47Apparently, I don't know how this works, but apparently they
- 6:49said it also can say it'll know how many, you know when, when
- 6:53you're taking the pills and how much you've taken.
- 6:55And if you live alone or if you're maybe you, maybe you're a
- 6:58caregiver, maybe your parents have Parkinson's and you're
- 7:01trying to help them and you're far away.
- 7:03It can actually, you can put people on alert so that they'll
- 7:06be alerted if there's just a different pattern in your home.
- 7:09So crazy incredible things, right?
- 7:11Like, I mean, but like, like who knows where the future is?
- 7:13And things are changing so terribly fast.
- 7:16I mean, you know, when I was a when I was a kid, you know,
- 7:20things took a long time to go from conception to actually
- 7:23having it. And nowadays they say that if
- 7:25someone has an idea, it can go from an idea to actually
- 7:28trialling and conception within a year or so.
- 7:31Hang in there. There's going to be good things
- 7:32for us coming. I believe it.
- 7:33I, I have to believe it. So let's hang on to that hope.
- 7:35And how about this? Here's one for tech lovers.
- 7:39OK, it's the AI and it's, it's machine learning, right?
- 7:44So computers are helping researchers spot the patterns.
- 7:46They run clinical trials faster and maybe even predict who will
- 7:49respond better to treatment and what different types of
- 7:52treatment. So Can you imagine right now?
- 7:54Here's a, here's a good example. When I was diagnosed 15 years
- 7:59ago, at the time I was 40 years old, DBS wasn't, you know, an
- 8:05option for me at the time, 15 years ago.
- 8:07They said that DBS was for, for when you get to the point where
- 8:10you can't manage anymore and you know, that's in your medications
- 8:13or whatever are happening that that's when you get DBS now, you
- 8:19know, 10, even about 8 years ago or 10 years ago, now they're
- 8:23saying, no, no, we believe now it's, it's for a young, a
- 8:26younger people. So we kind of get it before the
- 8:28progression kicks in. That way you can have a, you
- 8:30know, live a more productive life or keep working and, and
- 8:33whatnot. And that was actually, I said to
- 8:34my doctor, I said, that's the, you know, you lost me at, you
- 8:37know, let's get deep brain stimulation so you can work
- 8:39longer. I mean, that's not the incentive
- 8:41I needed right there. But, but anyway, you catch my
- 8:44drift, right? So if the robots eventually take
- 8:48over, at least I hope they come with good bedside matter and I
- 8:51can and can open a pill bottle because that's still my arch
- 8:54nemesis. Isn't that crazy, right?
- 8:57You know, to make sure I'm not just blowing smoke.
- 8:59Let's hear what some of the experts are saying.
- 9:01So Doctor Jane Smith at Harvard called stem cell research the
- 9:04most promising development in decades.
- 9:06And Dr. Hammond at the Toronto Western Hospital said gene
- 9:09therapy is moving from science fiction to standard practice
- 9:13faster than anybody expected. Hearing real excitement from
- 9:17scientists and doctors, now that gets me excited, right?
- 9:21But here's what really here's what matters the most to me, at
- 9:25least the community. I've met people who have joined
- 9:28clinical trials, not for themselves, but so the next
- 9:31generation won't have to go through what they've gone
- 9:34through. You know, one of my friends told
- 9:36me that if, if my story can help someone else, then every scan,
- 9:40every questionnaire, every awkward blood draw is worth it.
- 9:44That's the spirit of this community.
- 9:46Hope, resilience, and a little bit of stubbornness.
- 9:50So where are we? On the brink of a breakthrough?
- 9:53Honestly, I think we're closer than we've ever been.
- 9:55No, there's no miracle cure around the corner yet, but there
- 9:59is real honest to goodness progress and is being made by
- 10:03people who care every single day.
- 10:05So if you're feeling hopeful, let me know.
- 10:07And if you're feeling skeptical, that's OK too.
- 10:09This channel is a safe place for both.
- 10:10It's real, it's raw, you know, And if you want to keep up with
- 10:13new research or hear more about my own journey or just get a
- 10:16little laugh and encouragement each week, hit the subscribe
- 10:18button. Like, like the video.
- 10:20And consider joining the inner circle community for more behind
- 10:23the scenes and live chats. And then join the community.
- 10:26OK with Parkinson's, I guess I'll give you this, my Bryce's.
- 10:33I guess this is a Bryce's, right?
- 10:35With Parkinson's. The future used to scare me.
- 10:37Now I'm just curious of what kind of gadgets I'll have
- 10:39strapped to my body by 20-30 and whether my robot nurse will
- 10:43laugh at my jokes. Yeah, thanks for watching and
- 10:47thanks for being part of this amazing community.
- 10:49Remember, hope isn't just a feeling.
- 10:52It's a team sport and we're playing it together.
- 10:58Parkinson's may be part of your life, but it doesn't get to
- 11:01define it. Thanks for listening to Living
- 11:04with Parkinson's, The good, the bad, and the reality.
- 11:08If this episode moved you, helped you, or reminded you
- 11:11you're not alone. Share it with someone who needs
- 11:14to hear it. Want to go deeper?
- 11:16The Inner Circle is waiting. Monthly Zoom calls, 24/7
- 11:20community, and a Direct Line to Bryce.
- 11:22You'll find the link in the show notes.
- 11:24Until next time, keep showing up and keep doing life today.