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Transcript

Parkinson’s Emotions: Why We Avoid the Hard Conversations (And Why We Shouldn’t) · Living with Parkinson’s | Bryce Perry

• 0:01
  We talk about tremors and we talk about meds, but the real
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  stuff, the fear, the frustration, the identity
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  shifts. That's what we don't talk enough
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  about. And here's the truth.
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  Those are the conversations that usually change lives.
• 0:15
  So stick around, because today we're diving into the
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  uncomfortable side of Parkinson's, the part that most
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  people avoid, but everyone feels.
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  And later, Carmen's joining me again to share how those raw,
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  honest talks can make all the difference.
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  But not just for the person living with Parkinson's, but the
• 0:33
  for the care partner too. Welcome to Living with
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  Parkinson's, The Good, the Bad, and the Reality.
• 0:40
  Real talk, real life, real community with Bryce Perry.
• 0:45
  Let's begin. Hey everyone, and welcome back
• 0:49
  to Living with Parkinson's, The good, the bad, and the Reality.
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  Now, if you're new here, I'm Bryce and around here we talk
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  about everything that comes with Parkinson's.
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  The winds, the wobbles, the weird, and the real.
• 1:02
  Now, this isn't a highlight reel.
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  This is life unfiltered. And if you're someone living
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  with Parkinson's or caring for someone who is then or just
• 1:10
  trying to understand it better, you're in really good company.
• 1:13
  We don't just talk about symptoms here, we talk about
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  living, we talk about connection and sometimes, like today, we
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  talk about the things that are hard to say out loud.
• 1:23
  If that kind of honesty speaks to you, then hit the subscribe
• 1:26
  button and drop a comment and say I'm in because no one should
• 1:30
  have to face Parkinson's and silence.
• 1:33
  OK, this topic has been on my mind since last weekend's event
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  when I was speaking in Toronto. After I spoke, a lot of people
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  came up to, came up to me afterwards just to talk and not
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  about meds or exercise, but about emotions.
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  You know, I remember one man said to me that no one ever
• 1:53
  asked me how I'm really doing. They asked me how my tremors
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  going, how's Parkinson's, not about how am I feeling, how deep
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  down am I feeling? And that hit me really hard
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  because I've been there. You know, we used to answer
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  questions about symptoms. We're very used to it, but not
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  about ourselves. We'll say, yeah, my meds are
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  working, but we won't say I feel disconnected.
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  We'll say I'm doing fine. Well, what we mean is I'm tired
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  of pretending I'm fine. And the truth is, that's where
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  the real struggle lives, in silence, because silence has a
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  way of convincing you that you're the only one feeling that
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  way. So today, let's talk about it.
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  The fear, the sadness, the frustration, all of it.
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  And I'll share some ways that I've learned to actually start
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  those conversations even when it's uncomfortable.
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  Now, you don't have to open up to everyone.
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  You just need one safe person. Now that might be your partner,
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  might be your best friend or someone from your support group,
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  or just someone who actually gets it.
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  Start small. You could say something like,
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  hey, I don't really know how to talk about this, but I want to
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  try. That's it.
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  That's the doorway. And if you're the one listening,
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  don't try to fix it. Just listen.
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  That's gold. You know, we all need someone
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  who doesn't rush to patch us up. Just sit beside us in the mess,
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  just for a minute. Now, if you got that person,
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  hold on to them. And if you don't, that's exactly
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  why we built the inner circle. It's a space where you can talk
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  about all of it. The physical, the emotional, the
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  awkward, the funny. We laugh, we vent, we connect.
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  Because Parkinson's is really hard, but it's easier when
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  you're not doing it alone. And if you've got people like
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  that in your life, if you've got a group like that, like in your
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  life, that's amazing. And if you don't and it sounds
• 3:51
  like something you're missing, then check out the description
• 3:54
  in the in the description. Check out the link in the
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  description below about the inner circle.
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  And you know what? If you already have that one
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  person who listens, tag them in the comments.
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  Let's celebrate them today because that's really, really
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  important. Give them some credit, some
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  glory. OK, now let's talk about some
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  tools that help when the words are hard.
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  Because you're probably thinking, hey, Bryce, I want to
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  talk about this stuff, but I freeze up every time I just
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  don't want to talk about it. Well, guess what?
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  I've been there. Sometimes finding the words is
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  like trying to untangle Christmas lights in the dark.
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  You know? You know, there's a message in
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  there somewhere, but good luck trying to get it out.
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  So here are a few things that help me when words don't come
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  easy. First thing is, journal is
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  first. Journal at first.
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  Sometimes I write it out. Not fancy journaling, just brain
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  dump, right? Just getting thoughts out of
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  your head and onto paper. A clear space.
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  You know, that's why I'm actually working on this
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  Parkinson's specific journal right now.
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  One that's going to let you track both symptoms and
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  emotions. Because our mental health
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  deserves the same attention as our Med schedule.
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  Think about that one for a second.
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  And hey, comment journal below. If it's something that you'd
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  actually use, I'd love to know. Because if no one would use it,
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  what am I doing it for? OK, here is number 2.
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  OK, so here's the second thing. It's voice notes.
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  This one's really simple. I hit record on my phone.
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  I just talk. No script, no pressure, no
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  audience. Just me saying whatever needs to
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  come out. Sometimes I'll share with Carmen
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  later. Sometimes I just delete it
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  because I never want to share it with anybody.
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  But either way, it helps me process it helps me stop just
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  thinking about it. It gets it out.
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  Have you ever heard, have you ever heard somebody say like if
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  someone sends you an e-mail or something, you're, you're
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  emotionally, you're upset, someone kind of makes you mad.
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  You ever hear them say, you know, write, write the return
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  e-mail, but don't send it. Give it 24 hours and if you
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  still feel the same way, then send it.
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  It's sort of like getting it out in words, whether you're typing
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  it or whether you're reading it or whether you're speaking it
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  into your your voice app. There's something just so
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  relieving in that moment and it gets it out.
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  And I do that all the time. I just, I just hit record on my
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  phone and I blurt out, you know, if I'm mad or whatever going
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  through. And again, sometimes I, I, I let
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  Carmen listen to it. Sometimes I relist to a couple
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  times myself. Sometimes I turn it into a
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  podcast or sometimes, holy smokes, it's so raw.
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  I just erase it. Don't let anybody hear it, OK?
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  Now, if that sounds like something that you would do or
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  if you do that, let me know. Just record me in the comments.
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  Just record me, right? Record me, right?
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  OK, here is the third thing for you to look at, and that's
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  professional help. You know, there's absolutely no
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  shame in talking to a therapist or a counselor, especially
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  someone who understands chronic illness.
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  Now, you don't wait for your car to break down before you change
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  the oil. Same rules apply here.
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  Think about that. We spend so much time, we track
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  our oil right when our oil is going to run out of our car or
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  whatever it might be, we know when to get it and we get it
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  done. It's the same thing.
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  It's the same rules. Don't wait for yourself to
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  break, OK? Just do it.
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  Have it even as a check in, even once a year.
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  Sometimes I will go once a year, just checking in, making sure I
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  I'm accountable and I'm in, OK, And now here's tool #4I call
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  this one community check insurance, OK?
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  When you talk to others who are living this life, you realize
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  you're not broken, you're just human.
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  And that's a powerful reminder when the world feels small.
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  Each one of those steps, every single one of them, makes the
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  next conversation that much easier.
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  And every time you talk about it even a little bit, the weight
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  gets lighter. It really does.
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  Now, if any of those tools speak to you, drop a comment below on
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  which one you're going to try first.
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  Now I've got something really special.
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  It is time for Carmen's Care Partner Corner.
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  And guess what? I'm not going to read it.
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  She's here, so let me grab her. Hi, this is such an important
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  topic because from the care partner side, those
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  uncomfortable conversations can be scary too.
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  You don't want to say the wrong thing, you don't want to make
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  things worse, and sometimes you don't even know how to bring it
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  up. But when you finally do, it
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  changes everything. The first time Bryce and I
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  really sat down and talked about how Parkinson's was affecting
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  both of us wasn't easy. We were honest about fear, about
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  frustration, about what we both missed.
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  And that honesty created understanding.
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  Because Parkinson's doesn't just impact one person, it impacts
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  the whole relationship. And when we start talking about
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  it openly, it brings us closer instead of pulling us apart.
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  Care partners, I'll say this, you need community just as much
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  as the person you're caring for. You need people who understand
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  what it's like to love someone and feel helpless sometimes, to
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  be strong for them, but still need your own space to fall
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  apart and rebuild. That's why conversations like
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  this matter, because they remind us we're all human and we're all
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  doing the best we can with something we never asked for.
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  Wow. You know what, Carmen?
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  You nailed it. The hard part isn't always
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  starting the conversation, it's keeping it going.
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  So here are three simple ways to make sure that these talks don't
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  disappear after one emotional night on the couch. 1st,
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  schedule it. I know, it sounds romantic,
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  right? Honey?
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  It's Tuesday. Time for our time for our
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  emotional check in. But seriously, even 5 minutes a
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  day makes a huge difference. No meds talk, no chores, just
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  how are you doing? Second, use humor.
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  Humor is our secret weapon. Carmen and I joke about things
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  that would probably make other couples blush.
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  Truly, laughter breaks tension. It's one of the healthiest tools
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  we have, and it reminds us that we're still us.
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  And thirdly, don't wait for a crisis.
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  Don't let things build up until you're both ready to explode.
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  Talk while things are small and it'll save you both a lot of
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  pain later. And I'd love to hear what works
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  for you. Drop a comment and share how you
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  and your partner or your family keep these conversations going
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  because your ideas actually might help somebody else who's
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  watching right now. OK, so you made it this far.
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  You made it to the Bryce ISM. Here is your Bryce ISM of the
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  episode. With Parkinson's, silence is the
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  symptom that hurts the most. The conversation is the medicine
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  we can all give. All right, well, if this episode
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  hit home, please share it. Send it to somebody who needs to
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  hear that they're not alone. That's how we change culture
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  around Parkinson's, one honest conversation at a time.
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  And if you're ready to keep talking, keep laughing, and keep
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  connecting, then make sure you check out the inner circle
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  again. The link is in the description
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  below. It's where we have the real
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  conversation, just like this one, but in private.
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  And until next time, keep showing up.
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  You keep being real and you keep doing life today.