Latest / Living with Parkinson’s | Bryce Perry / The Hidden Parkinson’s Symptoms That Aren’t in Any Textbook

Transcript

The Hidden Parkinson’s Symptoms That Aren’t in Any Textbook · Living with Parkinson’s | Bryce Perry

• 0:01
  Have you ever had a Parkinson's symptom that nobody prepared you
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  for? I remember reaching for my
• 0:05
  coffee one morning and realizing that my hand was ice cold while
• 0:09
  the rest of me felt fine. Well, today we're talking about
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  the strange Parkinson's symptoms that you won't find in any
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  textbook and stick around till the end because one of them
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  completely changed how I manage my day-to-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 friends, welcome back. It's always good to have you
• 0:38
  here. And if we haven't met yet, I'm
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  Bryce and this is where we talk real life Parkinson's, the good,
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  the bad and everything in between.
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  I've been living with it for over 15 years now.
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  So what you hear hear is straight from the trenches.
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  The things that I wish someone had told me and the tips that
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  might just make your day a little bit easier.
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  But before we jump in, if you've experienced any strange
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  Parkinson's symptoms yourself, let me know in the comments.
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  Your experience might help somebody else realize that
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  they're not alone in this. So today's program is the hidden
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  Parkinson's symptoms that aren't in any textbooks, so let's dive
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  right into it. So the first one showed up for
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  me within the first few years of my diagnosis.
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  Temperature changes in my limbs. You you just heard about my
• 1:24
  coffee mug story. The one of the first times I
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  realized the Parkinson's was messing with my body temperature
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  and my left hand felt like it had been in a freezer, while the
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  rest was perfectly warm. You know, at first I thought
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  maybe Carmen had secretly cranked up the AC just on my
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  side of the bed as a joke, but it turns out, Nope, It's my
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  nervous system being, well, nervous.
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  So if you've experienced this, try light compression gloves or
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  warming packs. You know it's not a cure, but at
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  least you'll feel more like a human again and less like the
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  side of like a side of frozen beef.
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  Have you had this happen? Drop a yes in the comments so
• 2:01
  that I know that I'm not alone on this one.
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  That one caught me off guard early on, but the next one
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  didn't show up until about 8 years in.
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  I was in the middle of reading an e-mail and and the text
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  started to go blurry and double and I thought maybe I'd
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  accidentally clicked on one of those settings that makes your
• 2:18
  screen easier to read for seniors.
• 2:20
  Sorry, Nope, just my eyes. Deciding to unionize now.
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  If this happens, you need to let your neurologist know.
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  OK, sometimes an eye doctor can tweak your glasses, your
• 2:31
  prescription, or you can recommend recommend simple
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  exercises. And if you're like me, maybe
• 2:36
  avoid sending that important e-mail until things stop looking
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  like a Magic Eye poster. Now, if that one surprised you,
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  this next one is something that I didn't even know was connected
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  to Parkinson's until it happened to me personally around 10 years
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  in. You know, Carmen started asking
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  me to speak up all the time. I'd answer her again, thinking
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  that I was speaking louder and she'd still say it sounded
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  exactly the same. So I'd go even louder.
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  I feel in my mind, in my mind, I was almost like yelling.
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  I was yelling at her. And she's like, no, it's still
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  the exact same sound. And it was so confusing to me.
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  And that's when it hit me. What I thought was loud wasn't
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  loud at all to anyone else. Parkinson's was affecting the
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  muscles that control my voice, and I had no clue whatsoever.
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  So what did I do? I ended up starting speech
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  therapy, the Lee Silverman voice treatment, you know, also known
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  as the LSVT loud and Oh my gosh, did it make a massive difference
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  in my life. It literally increased my
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  decibels and it made my voice stronger.
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  Right now listen, it took work, right?
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  It takes a lot of work, but now I think I actually sound like, I
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  think I sound, you know what I mean?
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  And so that's the one thing I, I, I was wish I would have done
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  that a lot sooner because I don't want to wait until I'm
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  there, you know what I mean? I want to be ahead of these
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  things. And so for speech therapy and
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  those muscles that you need to work, you need to continually
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  work them. This is to me filming these
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  podcasts and doing everything that I'm doing, speaking is
• 4:15
  actually muscle work for me. It's actually you helping me.
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  This was actually one of the things like when and, and you
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  know, when I started filming these podcasts and do and
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  recording podcasts and, and what not well about my Parkinson's
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  journey. And I, I don't know if you know
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  this or not, but it was just early 2025, like in January 2025
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  that I started. So yeah, we've grown rather
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  quickly and I'm so appreciative of that.
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  But part of it was trying to find something that I was going
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  to do, you know, when I retired and into retirement that was
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  going to keep these muscles strong and keep keep my that the
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  memory part of it and going. So it's kind of like therapy for
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  me, right? And so I, I, I'm a big advocate
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  of speech therapy. If you haven't taken speech
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  therapy, look into it. Look into it now.
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  Don't wait until it starts getting lower and lower.
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  And if somebody around you has been noticing that you're
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  talking lower, this is the best thing I can do.
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  And you know, the best thing you can do.
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  And you know what else it helps? It helps with swallowing.
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  It helps with a lot of things. So I would highly, highly,
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  highly recommend you look into something in your area or
• 5:14
  online. Yeah, anyway.
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  And hey, if you like this kind of real life partisan talk,
• 5:20
  well, consider hitting subscribe.
• 5:21
  We do do releases three times a week, right?
• 5:25
  Tuesdays, Thursdays and Saturdays, and we do a live on
• 5:27
  Sundays with my buddy Brian. And I'd love for you to be part
• 5:30
  of the conversation. So hit that subscribe button and
• 5:32
  ring the bell so you always know when we have something new
• 5:35
  coming out. So we have things coming out a
• 5:36
  lot. And by the way, everything we're
• 5:38
  talking about today is from is from Parkinson's itself.
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  It's not from the medication side effects.
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  OK, I want to be really clear about that.
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  These are the things that you won't find in the pamphlet,
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  right? But they can hit you just as
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  hard. And remember, we're still
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  heading towards that one that I mentioned at the start that
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  completely changed how I managed my day.
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  So make sure you stay tuned to that.
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  So here's the next one. This next one started showing up
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  for me just a few years ago, and that is drooling.
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  Yeah, drooling. I've been mid conversation and
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  suddenly realized that I've got a little Niagara Falls situation
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  happening. It's it's not that you're
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  producing more saliva, it's Parkinson's just slows the
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  swallow reflex. OK, so some of the things you
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  can do to help that are some sugar free gum, you know, or a
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  mint can help remind your muscles to swallow.
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  And if it's persistent, then make sure again, you talk to
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  your neurologist about treatment options.
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  And here's a little bonus, at least gum makes you look like
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  you're thinking deeply instead of just leaking.
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  Think about that. And if you want to talk about
• 6:43
  things like this without the whole world watching in the
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  comments, that's exactly what we do in my inner circle community.
• 6:49
  It's a private, it's private, it's real, and it's a safe place
• 6:52
  to connect the links in the description for information
• 6:55
  about it. And I'd love to have you come
• 6:57
  over there. We are.
• 6:58
  We go deep, we go hard. It's a 24/7 community where you
• 7:01
  can post and interact with people just like you, from the
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  newly diagnosed to people that have been living with it for
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  1520 years and for care partners as well.
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  OK, so that last one was was awkward, right?
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  But this next one, this is the one I told you about in the
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  beginning, the one that completely changed how I manage
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  my day. OK, picture this.
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  I'm in the middle of a presentation.
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  I'm talking away. I'm feeling pretty good when
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  suddenly out of nowhere, I feel this like sharp twisting pain on
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  on the side of my body. OK, So at first I tried to like,
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  keep going. I'm thinking, OK, you know what?
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  This is going to pass. But it doesn't.
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  It actually gets worse. I have to stop mid sentence.
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  I have to grip the podium. And I can see people in the
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  front row exchanging that look, you know, that look like, do we
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  clap? Do we call somebody?
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  What's going on here? And here's the kicker.
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  It wasn't a heart issue, it wasn't that I pulled a muscle.
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  It was a cramp. A full on lock, you in place,
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  nothing you can do about it. Muscle cramp.
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  It locks so tight that I thought I needed a crowbar or maybe an
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  exorcist. You know, that moment changed
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  everything for me. It was unbelievable.
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  And so now I schedule stretch breaks into my day kind of like
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  clockwork, like alarms on my phone, non negotiable.
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  And if I'm in a meeting, I'll step out for two minutes to
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  move. It's one of the simplest changes
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  that I've made, but it has had one of the biggest impacts on
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  how I manage my Parkinson's. OK, before I share my Brycism of
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  the day, I want to know what's the strangest Parkinson
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  Parkinson's symptom that you've experienced?
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  Drop it in the comments because you might help somebody else
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  realize that they're not alone in how they're feeling as well.
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  OK, here is your Brycism with Parkinson's.
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  The symptoms you don't expect can sometimes change you the
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  most, not because they're the worst, but because they remind
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  you just how unpredictable this disease really is.
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  Well, there you go. If this episode helped you,
• 9:07
  please give it a like and share it with somebody else living
• 9:10
  with Parkinson's and hit subscribe so you don't miss any
• 9:12
  future episodes. And if you're looking for a real
• 9:15
  private community where you can talk about things like this 24/7
• 9:20
  with people just like you, whether you're newly diagnosed,
• 9:24
  whether you've been in this journey for a while or a long
• 9:26
  time like me with 15 years, or you're a care partner, check out
• 9:29
  the inner circle, right? It's my, it's private.
• 9:31
  It's awesome, the links in the description.
• 9:34
  And thanks for watching. And remember, whatever you do,
• 9:37
  just keep doing life and keep doing it today.
• 9:42
  Parkinson's may be part of your life, but it doesn't get to
• 9:45
  define it. Thanks for listening to Living
• 9:47
  with Parkinson's, The Good, the bad, and the reality.
• 9:52
  If this episode moved you, helped you, or reminded you
• 9:55
  you're not alone. Share it with someone who needs
• 9:57
  to hear it. Want to go deeper?
• 10:00
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 10:03
  community, and a Direct Line to Bryce.
• 10:06
  You'll find the link in the show notes.
• 10:08
  Until next time, keep showing up and keep doing life today.
• 10:18
  Parkinson's may be part of your life, but it doesn't get to
• 10:21
  define it. Thanks for listening to Living
• 10:23
  with Parkinson's, the good, the bad, and the reality.
• 10:28
  If this episode moved you, helped you, or reminded you
• 10:31
  you're not alone. Share it with someone who needs
• 10:34
  to hear it. Want to go deeper?
• 10:36
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 10:40
  community, and a Direct Line to Bryce.
• 10:42
  You'll find the link in the show notes.
• 10:44
  Until next time, keep showing up and keep doing life today.