Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s Treatments: 5 Emerging Therapies Everyone’s Talking About (What’s Real vs Hype)

Transcript

Parkinson’s Treatments: 5 Emerging Therapies Everyone’s Talking About (What’s Real vs Hype) · Living with Parkinson’s | Bryce Perry

• 0:01
  Everywhere I look right now, people with Parkinson's are
• 0:04
  talking about the next big thing, right?
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  Beach Band is all over my feed. People are messaging me about
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  gene therapy, new brain surgery tech, new medication, stem
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  cells, and honestly feels like we're in some kind of
• 0:17
  Parkinson's gold rush. But if you've had Parkinson's
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  longer than a week, you know the truth.
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  For every real breakout there are 10 overhyped headlines and a
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  couple that are just straight up scamps.
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  So today I'm going to walk you through 5 emerging Parkinson's
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  therapies that people keep asking me about what the science
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  actually says, what might be over hyped, and how I'm thinking
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  about them as someone living with this every day.
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  And stay tuned, because at the end of this episode I have some
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  really big news, something the community is buzzing about
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  non-stop, and I'm finally ready to talk about it.
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  Welcome to Living with Parkinson's, The Good, the Bad,
• 1:00
  and the Reality. Real talk, real life, real
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  community with Bryce Perry. Let's begin.
• 1:09
  Well, welcome to the channel. I want to thank my loyal viewers
• 1:13
  for coming back again and again and again.
• 1:15
  And a great big welcome to all the brand new subscribers.
• 1:18
  Hundreds of you are joining every single day.
• 1:21
  And so if you're new here, I'm Bryce and this is living with
• 1:24
  Parkinson's, The good, the bad and the reality.
• 1:27
  And on this channel, we talk about Parkinson's with hope,
• 1:31
  honesty, some helpful science, and just enough humor to keep us
• 1:36
  from losing our minds. And so if you haven't
• 1:39
  subscribed, please subscribe and join us.
• 1:42
  Come on a journey with us. And you know what?
• 1:45
  Do me a favor, if you hit that like button right now, you did
• 1:47
  it in the last episode. And YouTube just pushed this to
• 1:50
  all new people. So let's find every person with
• 1:53
  Parkinson's out there who's lost.
• 1:55
  Hit that like button and let's move it around.
• 1:56
  OK, now stick around. You need to stick around because
• 2:00
  I got some really big news. It is huge news that I'm going
• 2:04
  to share near the end of the broadcast.
• 2:07
  And I've got a brand new Bryceism that starts starts deep
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  and ends with A twist that I hopefully you won't see coming.
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  But let's dive right into today's episode and remember,
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  I've got major news coming up later in the show, so don't go
• 2:20
  anywhere. Now, the number one thing that I
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  want to talk about today is gene therapy.
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  OK, now this is where researchers try to change or
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  replace the genes that play a role in Parkinson's.
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  In early studies, especially in animals, you see improvements in
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  symptoms and even hints of slower progression.
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  Pretty cool, right? Well, here's the science.
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  In simple terms, researchers insert helpful genes into
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  specific brain regions, and those genes tell your cells to
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  produce things like dopamine helpers or protective proteins.
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  The goal is to make the brain function better despite
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  Parkinson's. Now that sounds incredible, and
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  honestly, the science is moving faster than it ever has.
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  But here's the reality. Gene therapy for Parkinson's is
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  mostly in the early stage trials.
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  OK, we are still years away from this being something that your
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  neurologist can just order, you know, we don't need, we don't
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  know yet who will even will help the most.
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  So my take on it, pay attention to it.
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  Ask about trials, but don't put your whole life on hold waiting
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  for gene therapy to be the magic answer.
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  OK, now therapy number 2 is something a lot more people
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  actually qualify for. And again, I'm going to remind
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  you again, stay tuned. The big announcement later
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  connects connects to one of these categories coming up.
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  All right, my #2 DBS, but not the old DBS.
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  The newer adaptive systems, traditional DBS is like having
• 3:58
  one setting all day long, right? Adaptive or closed, closed loop
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  DBS can actually read your brain activity in real time and adjust
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  the the stimulation automatically.
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  Like think of that. Think of it like your thermostat
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  turning the heat up and down without you having to touch
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  anything. Wow.
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  Now why does that matter? Well, it matters because
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  potentially smoother symptoms, you know, control, possibly
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  fewer medications, and more personalized treatment.
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  But DBS is still surgery, still has risks, and it doesn't fix
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  everything. Now, if DBS is already part of
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  your medical conversation, bring up adaptive systems.
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  It's worth knowing, but your options are make sure you bring
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  that up. And if you had DBS, just, you
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  know, give me a hashtag DBS in the comments and see how many of
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  you out there have had that. OK, but let's move into
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  something that doesn't require surgery but can make a huge
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  difference in your life. OK, The number 3 #3 is new
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  medications and new delivery systems and they include things
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  like longer acting levodopa options, 24 hour levodopa pumps,
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  right? Adjunct medications that boost
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  your main meds, fast acting rescue meds for sudden off
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  periods, which would be cool, right?
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  And these don't get dramatic headlines.
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  But for many of us, this is where real quality of life
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  changes happen. More on times, fewer crashes in
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  smoother days. Don't overhaul your your meds
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  based on a news article, though. But absolutely talk to your
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  neurologist about these new options.
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  Sometimes the smallest adjustments make the biggest
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  difference. You know, the Violet pump for
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  one is a great example. And I've heard people raving
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  about it. Now, there are some side side
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  effects and drawbacks, but everybody that I talked to in
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  the community to, to a person that has had it, they love it.
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  And, you know, it just smooths that day out.
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  You don't have to worry about your medications.
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  It pumps it in when you need it. So if that's something that you
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  know, you're looking for these kind of things, definitely
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  something to talk to your doctors about.
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  OK, Now, therapy #4 though is one that I used to roll my eyes
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  at until I saw the research and I lived through it myself.
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  OK #4 is strength training and functional movements.
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  OK? Now, this isn't about
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  bodybuilding. This is about building
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  stability, balance and power. You know, research, research
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  keeps showing that, you know, better walking, more confidence,
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  less freezing, less stiffness, better posture, better mood.
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  I mean, my God, that's like a that's like the menu of what we
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  want, isn't it? OK, let me give you a quick
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  story. When Carmen and I were in
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  Vancouver for a convention, I think it was this past summer, I
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  don't think we realized how how every route from our hotel to
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  the Convention Center was uphill.
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  It was awful. My body was like, what did you
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  bring me to? But even my stiffness, you know,
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  even with my stiffness, even with fatigue, that movement
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  helped. Strength helped, Consistency
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  helped. OK.
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  And again, you don't need to be an athlete.
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  You just need small movements done regularly.
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  All right, now this brings me to something that I want to talk
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  about, and it's something that every person with Parkinson's
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  feels OK. But here's emerging Therapies
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  are exciting. They give you hope, but they
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  also can mess with your head. Let's talk about the solo out
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  there. They're solo.
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  Are solo warriors OK? You know, it's this emotional
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  whiplash. You know, one minute you're
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  hopeful and the next minute you're frustrated.
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  You know, the next minute you're Googling something that you
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  shouldn't be Googling at 3:00 AM because sleep decided to take
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  the night off again. Some days I'm motivated.
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  I'm tracking my meds, I'm reading studies, and I'm trying
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  new routines. And other days I'm like, no, no,
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  today we're sitting on the couch and I'm eating cereal.
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  And you know what? Both are OK.
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  Living with Parkinson's isn't about chasing miracles.
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  It's about stacking small wins, tiny improvements, and tiny
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  discoveries. And that's how your life gets
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  lighter again. So for those solos out there,
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  it's not about having someone there all the time to tell you
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  that, but it's something to yourself to make sure that you
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  take those small victories and you start stacking them into big
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  ones. OK, now let's move into
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  something that we've been doing lately here, and that's Carmen's
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  care partner Corner. OK, And here's what Carmen wrote
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  for me to read to you today. All right, Hi, everyone.
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  It's Carmen. Whenever a new therapy comes
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  out, Bryce goes into what I call his mad scientist mode.
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  He starts researching, watching videos, reading studies and
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  telling me he has. He has a feeling this might be
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  the thing. Meanwhile, I'm standing here
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  thinking three things. One, I hope it actually helps.
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  2. I hope the side effects aren't
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  worse than the symptoms. And three, please do not let
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  this thing beep at 2:00 in the morning.
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  I said that and don't let this thing beep at 2:00 in the
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  morning because care partners live the roller coaster too.
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  We feel the excitement and the anxiety.
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  We also hear the noises these devices make at all hours of the
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  night. So if you're a care partner
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  watching this, you're doing better than you think.
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  And if the device does start beeping at 2:00 in the morning,
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  don't worry, we all hear it. Cute.
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  I love her honesty. And she's right here.
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  Partners go through all of it with us.
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  Plus the sound effects. All right, therapy #5 is one
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  that a lot of people message me about probably a lot.
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  Probably one of the most things that that I get messages about.
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  And that is cell and stem cell therapy.
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  OK, now this is where researchers are taking special
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  cells and trying to replace the dopamine producing cells that
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  Parkinson takes away. And early result, results are
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  hopeful, better movement, sustained improvements, you
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  know, actual dopamine cells showing up on scans.
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  But like gene therapy, it's still in trials, early trials.
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  So it's still controlled, still early.
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  And please, if you see any private clinics online promising
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  these miracle stem cell cures for cash, that is almost always
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  a red flag. So be very, very careful, OK?
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  And now let's talk about the big reveal, the big announcement,
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  what I've been teaching you about all episode.
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  Now, something was just launched this week in North America and
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  the buzz is everywhere. Oh, pipe question stories.
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  The internet's going crazy. And of course I'm talking about
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  the beach band. And I'm the type of person I
• 10:57
  really need to understand something.
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  I want to hear about it and I don't want to hear about it from
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  just anybody. I want to hear about it from
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  people that have are using it and what what experience we're
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  having and or and both. I'd like to talk to the guy that
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  invented it. So I reached out to Carl Beach
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  and he was excited to come on the podcast.
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  So here's the deal. We're going to be recording 2
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  full podcast episodes, one right here on On Living with
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  Parkinson's, The Good, the Bad and the Reality where I'm going
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  to sit down with Carl one-on-one and then going to ask him some
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  tough questions. I want to know, I want to know
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  the deets. I want to know where this came
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  from and what it's doing and you know who should use it and who
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  shouldn't use it. And the second one, we are going
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  to be doing a live recording and we're going to be doing it on
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  Life in motion, the Parkinson podcast. me and I Co host my
• 11:44
  partner in Parkinson crime Brian, and we're going to be
• 11:47
  playing shaky faky with, with Carl and and whatnot, right?
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  It's going to be a really, really, really great episode.
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  And there's a little twist on this one.
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  If you're in the inner circle, you get to come to the live
• 11:58
  taping. Boom, come on in, come behind
• 12:02
  the scenes. You can there's going to be a 20
• 12:05
  minute private Q&A with Carl Beach, me, Brian and Carl Beach
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  that just just for you and it's going to be amazing.
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  So if you want to be in this virtual room and be in the inner
• 12:17
  circle, hear the real behind the scenes and ask Carl your own
• 12:20
  questions, the link to this to the inner circle is below you.
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  Come on and join us and you can have be part of that.
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  OK, now man, that was a lot, right?
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  Lots of cool stuff going on on the channel.
• 12:32
  But let me let me end with this Bryce system for you.
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  OK, here's today's Bryce ISM with Parkinson's.
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  Breakthroughs rarely arrive all at once.
• 12:42
  Most of the progress happens quietly, one small adjustment at
• 12:46
  a time. And then one day you look back
• 12:49
  and you think, wow, when did that happen?
• 12:52
  And why am I still wearing my indoor slippers in public?
• 12:58
  Anyway, thanks for watching. Let me know in the comments
• 13:00
  which emerging therapy gives you the most hope and which one
• 13:03
  makes you the most nervous. I love you guys.
• 13:06
  I love this community. We're growing and we're growing.
• 13:09
  And you know what? We are going to change the way
• 13:11
  the world. I'm telling you, we're going to
• 13:14
  change the way the world sees Parkinson's.
• 13:18
  All right, until next time, keep showing up, keep being real, and
• 13:22
  you keep doing life today. Parkinson's may be part of your
• 13:28
  life, but it doesn't get to define it.
• 13:31
  Thanks for listening to Living with Parkinson's, the good, the
• 13:34
  bad, and the Reality. If this episode moved you and
• 13:38
  helped you or reminded you you're not alone.
• 13:41
  Share it with someone who needs to hear it.
• 13:43
  Want to go deeper? The inner server was waiting
• 13:46
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 13:50
  Bryce. You'll find the link in the show
• 13:52
  notes. Until next time, keep showing up
• 13:55
  and keep doing life today.