Latest / Living with Parkinson’s | Bryce Perry / The Silent Struggle No One Talks About (And How to Break Free)

Transcript

The Silent Struggle No One Talks About (And How to Break Free) · Living with Parkinson’s | Bryce Perry

• 0:00
  Imagine this. You get invited to a family
• 0:02
  dinner, but instead of going, you stay home.
• 0:05
  You tell yourself you're too tired, but deep down you know
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  you're afraid. Afraid of how you might look,
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  how you might sound, and what people might think.
• 0:15
  So you sit in silence while life goes on without you.
• 0:19
  Or maybe it's this. Your friends are out, but you've
• 0:21
  already talked yourself out of it.
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  You imagine the tremor, the stiffness, the awkward stairs.
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  It feels safer just to stay home.
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  Or maybe you actually do show up.
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  You're you're there, you're in the room, but you don't step in,
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  you stay quiet. You hold back, and on the
• 0:38
  outside it looks like you're fine, but on the inside you're
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  screaming to be seen. That's isolation, and the longer
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  it goes on, the more it compounds.
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  Missing out turns into loneliness, loneliness turns
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  into depression, and before you know what, you're not doing
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  anything anymore. You're just existing, and
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  barely. Well, here's the hard truth.
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  If you're not experiencing this yet, there's a really good
• 1:02
  chance that you will as your Parkinson's progresses.
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  And that's why today we're talking about isolation, the
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  silent struggle that comes with Parkinson's, and more
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  importantly, how to break free from it.
• 1:15
  Welcome to Living with Parkinson's, The Good, the Bad,
• 1:19
  and the Reality. Real talk, real life, real
• 1:23
  community with Bryce Perry. Let's begin.
• 1:28
  Well, that was that was tough. That was tough, man, I'm sorry.
• 1:31
  That was hard. So listen, if you felt that
• 1:33
  isolation a bit like that already, just put, I get it in
• 1:36
  the comments because I know people, I won't want people to
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  feel all alone in this. Just I get it in the comments
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  because that was a that was a tough hard, that was a hard
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  start. Hey everyone, I'm Bryce here and
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  I'm really glad that you're here for this one.
• 1:48
  If you're new to the channel, I've been living with
• 1:49
  Parkinson's now for over 15 years.
• 1:52
  And on this channel we talk about the good, the bad, and the
• 1:54
  reality of Parkinson's. It's not medical advice, it's
• 1:58
  real life. And if you've been with me a
• 2:00
  while, thank you so much for being a part of this amazing
• 2:03
  community. Now, Speaking of community, we
• 2:07
  just moved into a brand new inner circle platform.
• 2:10
  That's my private community and it's buzzing already.
• 2:13
  It's cleaner, it's faster and more interactive, and there are
• 2:15
  spaces to share. Share your daily wins to share
• 2:18
  your vents, your wobbles and actually talk with people who
• 2:20
  get it. And you know what I'm going to
• 2:23
  make it free for three days this week only.
• 2:25
  So the links in the description, just check it out.
• 2:27
  There's no obligation. Matter of fact, I was just
• 2:29
  looking. They were talking about what's
• 2:31
  if you can name the song put a song your Parkinson's into a
• 2:34
  song. It's it's hilarious.
• 2:35
  You should check it out. It's just people like you and
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  care partners like you getting just just doing life together.
• 2:41
  It's awesome. Anyway, now let's talk about
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  isolation because here's the thing.
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  It doesn't always look like hiding away at home.
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  Sometimes it's obvious, like saying no to an invite.
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  But sometimes it's subtle. You're at the event, but you sit
• 2:57
  in the back, you don't join in and you let life pass you by,
• 3:02
  you know? Other times it's the fear of
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  embarrassment. You know, the thought of what if
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  I freeze? What if I can't get the words
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  out? What if I start shaking?
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  And that kind of self talk can keep you home.
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  And there is. And then there's the social
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  apathy. Parkinson's has this way of
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  draining energy out of you. You know that.
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  But it's not just physical, emotionally too.
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  And you know, it's like you just don't feel like doing anything.
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  And that's a dangerous place to be because once you stop showing
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  up, friends start to drift away. And not because they don't care,
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  but because you stop being a part of the picture.
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  Now, if one of those sounds like you type, that's me in the
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  comments. And now you, you might be
• 3:43
  thinking, OK, Bryce, so I stay home a bit more.
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  What's the big deal? Well, it is a big deal because
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  here's where the science comes in.
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  Isolation doesn't just affect your social life, it affects
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  your health. Research shows that isolation
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  leads to higher rates of depression and anxiety, and it
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  can actually speed up symptom progression.
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  Why? Because when we stop connecting,
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  we stop moving, we lose motivation and, and movement is
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  one of the best medicines that we have for Parkinson's.
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  Now, humans are wired for connection.
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  Parkinson's tries to rob us of that connection, not just
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  through the physical symptoms, but through fear and
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  embarrassment and apathy. You know, that's really why I
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  started the inner circle. It's my private, that private
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  community because no one, it's my, my, no one should have to go
• 4:32
  through this alone. And it's a space where you can
• 4:35
  actually feel seen. And it's free for three days.
• 4:39
  Check the link in the description.
• 4:41
  But now let's switch gears for just a minute because the one
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  thing I didn't mention is someone asked in the comments
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  the other day, what about care partners?
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  Yeah, there's care partners inner circle.
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  There's a space for you. There is a corner for you there
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  as well. And Speaking of care partners
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  brings us to time for Carmen's care partner corner.
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  And here's her take on the on the topic.
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  Bryce would stay home all the time if I let him.
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  And to be honest, I'd probably be OK with that because I'm a
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  homebody too. But I know how easy it is to
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  slip into isolation that way. So I push us to get out when
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  we're invited to family events or to go out with friends.
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  I don't give him the option to say no unless he's really not
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  feeling well. Now, tired is one thing, not
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  feeling good is something else. If it's just tired, I push him
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  because I know how important it is to power through.
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  My advice to other care partners is this.
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  Sometimes you've got to be the one who nudges you, know your
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  partner of the best. You know the difference between
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  when they really can't and when it's just easier for them to
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  stay home. And pushing gently but firmly
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  can make all the difference. I like that, you know, I knew
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  she was. I, I, I play along.
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  No, I'm just teasing that she pushes me and that's Carmen's
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  care partner corner. And she's right.
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  Like without her, I would spend way too much time at home doing
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  nothing but scrolling my phone. So what do we do about this
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  isolation? Well, let's talk about 5
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  practical ways that you can push back against it.
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  OK, Get ready, write these down. Tip #1 do not wait for invites,
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  you create them. Isolation grows when we sit back
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  and wait for somebody else to call.
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  Be the one to set up the coffee, to call the friend, to invite a
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  neighbor for a walk. It doesn't have to be a big
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  thing. Excuse me?
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  It just has to be something. Here's a challenge for you right
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  now, for you, if you've been putting something off, if you've
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  been, you know, shying away from from from going and hanging with
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  friends or family or, or, or I started to isolate and you can
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  feel it. I'm going to challenge you this
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  weekend. Do something, call a neighbor,
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  text a friend, get social, just be social, just talk.
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  If that's you, if you do something this week and I want
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  you to come back and I want you to put in the comments, just say
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  I did it. Just put it, I did it, I did it.
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  OK, tip #2 you need to find your Parkinson's tribe.
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  Now. These are the people who get it
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  without you even have to explain it.
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  You know, whether it's a local support group, an online
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  community, right? Or the inner circle, you know
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  having that tribe is powerful. They already know what you're
• 7:23
  going through, so you can skip the explanations and get right
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  to the real talk. Now, if you've already found
• 7:29
  your tribe, just type found mine in the comments.
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  You haven't. Maybe this is the nudge you need
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  it. Just say need it in the
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  comments. Found mine.
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  If you have a tribe, need it. If you need it and you know you
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  do in the comments, tip #3 ready.
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  Move together. Exercise is medicine, but it's
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  also connection. A walking group, a dance class,
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  a boxing class, or just stretching with a friend.
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  When you combine movement and connection, it's a double win.
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  You know, I remember one time I joined this Parkinson boxing
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  class. I was just so nervous, right?
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  Thinking everybody would be sizing me up.
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  But what? And they were, and I probably
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  was too. But what actually happened?
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  No, we all laughed at ourselves together because guess what?
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  Nobody cared how stiff or shaky we were, right?
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  We were just moving. We were moving and they were
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  shaking worse than I was and I was shaking worse than them and
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  I was stuttering their way. It was just wild.
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  It was wild, it was fun. I don't know, what do you call
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  it, boxing? Maybe, maybe not.
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  I mean, I mean, if it was I was in, you know, on a boxing match,
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  I probably would have gotten whooped.
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  But it was fun, it was powerful. It was just people that knew and
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  got it. I didn't explain myself.
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  I'm social and I moved and I felt good afterwards.
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  OK, tip #4 bring your caregivers into the circle.
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  Don't leave them out on the sidelines.
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  Care partners need support just as much as we do.
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  Invite them into groups, let them share their stories, and
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  let them be heard. Because when caregivers are
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  supported, everybody's stronger. They really are.
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  And all the care caretakers say, care partners said Amen.
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  All right, tip #5 educate your friends and family.
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  Sometimes isolation happens because people just don't
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  understand Parkinson's. They don't know what it feels
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  like to freeze or not to be able to speak up.
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  Sharing resources, inviting them to watch videos like this,
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  sharing this podcast with them, even stuff like that will help
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  them learn and that can break down walls and open doors.
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  And if you think education could help your circle understand you
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  better, type tapes that teach them.
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  Teach them in the teach them in the comments.
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  Oh jeez. And here's the thing, isolation
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  is powerful, but so is connection.
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  And for me, the turning point was finding people who actually
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  understood me. People who didn't flinch when my
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  hand shook or when I froze in the middle of a sentence or when
• 9:54
  I jumbled my words on a video like this, You know, any other
• 9:58
  YouTube channel out there, people be like, what's he doing?
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  This guy shouldn't even be doing this.
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  But you guys, anybody watch? You're so beautiful and
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  wonderful. And I don't feel like I have to
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  be me. I don't have to.
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  I don't have to cut corners. I don't have to edit stuff and
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  try to be somebody I'm not. And that makes me feel heard and
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  seen. And that's that type of
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  connection that changes everything.
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  That's what I want for you. That's when I didn't feel
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  invisible anymore when I started connecting with others that knew
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  what I was going through. So powerful.
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  And that's what I want for you. That's why things like the inner
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  circle exist. And you know what?
• 10:30
  The inner circle's not the BLM though.
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  It's just mine and the people I the people that are amazing.
• 10:34
  But there's lots of things like that.
• 10:36
  You need to find yours, right? You need to check out a few and
• 10:39
  see what works for you. That's why I'm doing that three
• 10:41
  day thing. So I don't want to feel anybody
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  feel obligated. You come for three days.
• 10:45
  If it's your thing, you find your tribe awesome.
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  If you don't, that's OK there. But there is a tribe for you.
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  And if you're newly diagnosed, maybe isolation isn't even on
• 10:55
  your radar yet. I know that feeling.
• 10:58
  You're thinking about meds, you're thinking about symptoms
• 10:59
  and what the future looks like. But let me tell you, I don't
• 11:04
  want to scare you, but let me tell you, isolation will creep
• 11:06
  in on you at some point, especially if you don't prepare
• 11:09
  for it. And that's why I built this
• 11:13
  brand new six week boot camp. It's like boot camp with Bryce.
• 11:16
  Bryce is boot camp. It's going to give you tools
• 11:18
  that I wish I had when I was first diagnosed.
• 11:20
  I've been in your shoes a long time ago, but I've been in your
• 11:23
  shoes and I spent five years hiding and trying to pretend I
• 11:26
  didn't have this and not talking about it.
• 11:28
  And I wasted five years of my life thinking it was over and it
• 11:30
  wasn't over. That was that was over almost 14
• 11:34
  years ago. It wasn't over.
• 11:36
  And I don't want you to waste that time.
• 11:38
  And that's why I built this, this boot camp and I call it a
• 11:41
  boot camp. It's not going to be easy, but
• 11:42
  we're going to get down and in it now spots are open right now.
• 11:45
  I'm only just click the link in the description below.
• 11:48
  You need to reserve your spot today that opened the course
• 11:51
  opened up yesterday. I mean, it starts in a month,
• 11:53
  but is this the preceding just to kind of get in there And I
• 11:56
  think there was already 10 gone. So there's 40 left, right?
• 11:59
  They'll be, you know, I don't know when the next that's going
• 12:01
  to come out. There will be another one coming
• 12:02
  out. Won't be at this price.
• 12:03
  But anyway, I need you to in. I want you in.
• 12:06
  And if you want to do it with me, you want to learn how to
• 12:08
  live, to do your life my way and do it, to do it your way and
• 12:11
  learn the tools and tricks that I wish I knew when I was first
• 12:15
  diagnosed. Or even if you weren't just
• 12:16
  diagnosed, if you're just not living your life, you're ready
• 12:19
  to start doing life today. Sign up right now.
• 12:21
  It's in the links in the description.
• 12:23
  I'll be there. We'll do it together.
• 12:25
  OK, so that's isolation with Parkinson's.
• 12:27
  It sneaks in through embarrassment, through apathy,
• 12:30
  through anxiety. It compounds into loneliness and
• 12:33
  depression. And before you know it, you're
• 12:35
  doing less, you're moving less, and you're living less.
• 12:40
  But you don't have to let it win.
• 12:41
  You can fight back with connection, with community and
• 12:45
  with support. If you're ready to push back
• 12:48
  against isolation type. Not alone in the comments.
• 12:51
  Not alone anymore in the comments.
• 12:54
  And since you made it this far, you get and you've unlocked
• 12:57
  today's price ISM. You ready?
• 12:59
  Here it is with Parkinson's. The disease isolates us by
• 13:03
  default. Connection is how we fight back.
• 13:08
  All right, Don't forget everything's open, everything's
• 13:10
  free. Just check the description for
• 13:12
  everything you need. And if you haven't hit subscribe
• 13:15
  yet, what are you doing? You've been in this far.
• 13:17
  Hit subscribe so you don't miss the next real conversation.
• 13:20
  And remember, I read and I reply to every single every single
• 13:25
  comment on YouTube. And if you haven't hit that
• 13:28
  little bell by the description or by the thing, get notified,
• 13:32
  get notified when I reply to you.
• 13:34
  OK and until next time, I love you so much.
• 13:37
  I love this community and I want you to keep showing up.
• 13:40
  I want you to keep being real and you just keep living life
• 13:44
  and doing life today.