Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s Doesn’t Just Affect Me — It Affects Us

Transcript

Parkinson’s Doesn’t Just Affect Me — It Affects Us · Living with Parkinson’s | Bryce Perry

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  They told him he had five good years left.
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  That was 15 years ago. He's still standing, still
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  speaking, still living. This is living with Parkinson's,
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  The good, the bad, and the reality.
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  A podcast about what happens when life throws you something
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  incurable and you fight back anyway.
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  Hosted by Bryce Perry, diagnosed at 4015.
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  Years into the battle, This is the truth behind the tremor.
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  Let's begin. Parkinson's didn't just happen
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  to me, it happened to my wife, it happened to my kids, it
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  happened to my friends. Even they didn't sign up for it.
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  I may be the one diagnosed, but they're the ones living with it
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  too. Let's talk about the impact that
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  this thing has on us and on them.
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  Hey, friends, welcome back. This is, if this is your first
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  time here, I'm Bryce, and this is living with Parkinson's, The
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  good, the bad, and the reality. And this podcast is all about
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  telling the truth about Parkinson's.
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  The parts that are hard to say out loud and the parts that need
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  to be said even more. Today's episode's a little
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  different because it's not just about us, not just about me.
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  It's called Parkinson's doesn't just affect me, but it affects
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  us. And let's get right into it.
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  When I was diagnosed, I remember thinking, OK, what now?
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  But what I didn't realize in that very moment was I wasn't
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  the only one who got diagnosed that day.
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  My wife got diagnosed, my kids got diagnosed, my friends, even
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  my Co workers all got handed something they didn't ask for.
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  They didn't have the symptoms, they didn't have those physical
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  symptoms or those cognitive symptoms.
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  But they live with the fear, the unknown, the awkward
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  conversations, the shifts in plans, the long waits, the short
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  answers, and the weight of watching someone you love change
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  in ways that are progressive. And honestly, you can't stop.
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  Imagine, right? I mean, we go through that
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  ourselves, don't we? Those that are diagnosed with
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  it, you know, we feel that we've, we're, it's frustrating,
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  it's frustrating, it's frustrating.
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  You know, we go through all these different emotions.
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  We don't know what, you know what one, why one day is good,
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  one, why one day isn't so good. We don't know what the future
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  looks like. We have all these fear and
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  doubts and things that run through our minds.
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  And you know, we keep ourselves positive and we keep moving
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  forward, which we do and it's great.
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  And, and you know what we, we believe that at least I believe,
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  and hope you believe too, that, you know, diagnosis of
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  Parkinson's is not a death sentence, right?
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  We still have a good life to live.
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  We're going to do life. We're going to do it today.
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  We're going to live it. That's what we do here.
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  That's what the followers of this channel are the, the my
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  inner circle where you're doing life, we're doing it hard.
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  We're we're living life and we're going to enjoy it.
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  We really, really are to, to the best we've combined.
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  But think about it, all those around you, right?
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  Those around you, they have those same feelings and those
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  same kind of fears. So what are we going to do about
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  it? Well, let's talk about our care
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  partners for a second. The people who stay, the ones
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  who help, sometimes without ever calling themselves caregivers.
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  The ones who do the dishes, carry the bags, sit in the
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  waiting rooms and Google symptoms late at night.
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  They feel guilty for being tired.
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  They feel helpless when they can't fix it.
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  They feel invisible when people ask, but how is he doing?
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  They carry so much, and half the time they're doing it quietly.
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  Then they're friends. Some stay and some slowly
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  disappear. Can you relate to that?
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  I sure can. Let me know in the comments.
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  Did you? Did you lose friends?
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  Have you lost people? Have you lost your peeps, which
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  really weren't your friends if you lost them?
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  And that's an easy way to get over it quickly.
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  It's not always out of malice. Sometimes it's discomfort or
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  fear, or sometimes they just don't know what to say.
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  Honestly, what can hurt more than disease itself, right?
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  But some people, a surprising few, they lean in and they show
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  up. They don't flinch when you
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  freeze, and they don't treat you like glass.
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  They still invite you. They still listen to those
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  people. You have no idea.
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  You have no idea what that means to us.
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  You really don't. It's amazing.
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  It's amazing. I want to say something really
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  clearly here. Parkinson's puts pressure on
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  relationships, even the strongest ones, right?
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  It creates new rules, right? New rules, rules, roles, rules,
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  rules and roles. Hey, it creates, creates new
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  roles. Caregiver, scheduler, symptom
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  spotter, advocate. And sometimes you miss the old
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  dynamics, the way things used to be, the spontaneity, the
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  lightness. But if you're lucky, and I mean
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  really lucky, you adapt together and you end up breathing
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  together. You grow together.
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  And yeah, you still laugh. It's not about going back.
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  It's about finding your new rhythm, even if you're offbeat
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  sometimes. And if you're watching this and
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  you're loving someone with Parkinson's, you probably don't
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  hear this enough. Thank you, Thank you, Thank you.
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  Not just for what you do, but for who you are.
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  But understand you don't need to fix everything.
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  And you don't have to be perfect, but your presence, your
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  presence that changes everything.
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  And here's here's what we. Stay with us.
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  We'll be right back. The links in the show notes.
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  From you patience. Sometimes we freeze, sometimes
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  we forget, sometimes we're Moody, and sometimes we are
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  really agitated and frustrated. Be patient.
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  Not just with us, but be patient with yourself too.
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  We need honesty. We don't need you to sugarcoat
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  it. If you're scared, overwhelmed,
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  say it. Say it because we're in this
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  together. It's not just us, right?
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  It's you too. We're in this together.
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  Boundaries. Take care of yourself.
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  You don't have to pour from an empty cup.
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  You can't pour from an empty cup.
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  And it's OK to ask for help. In fact, we want you to.
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  You know, if you heard that, you know, when you go on an airplane
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  and they're giving you the instructions beforehand that
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  hopefully none of you or none of us and me have never had to deal
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  with. But you know, they say in case
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  of an emergency and that, and they say that the, what you call
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  those masks, things will drop out.
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  You're the, the mask, the oxygen mask will fall from the ceiling.
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  And you know how they always do with the, the stewardesses and,
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  and Stewarts, they always, they're always like, you know,
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  put your mask on 1st, you know, put your mask on 1st and then
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  help somebody else because if you lose oxygen, you cannot help
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  somebody else. So you need to help yourself
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  make sure you're in a good place first and then you're in a good
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  place to help us. And if you feel like you're
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  burning out or you're feeling really tired, that's, you know,
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  feeling tired and overwhelmed when that overwhelmed feeling is
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  becoming overwhelming, overwhelming whelming, That's,
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  that's your key, that's your, that's your node.
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  And you know, there's as much support out there for you as
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  well. There is care partner support
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  groups. There are communities like this
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  where there's care partners full of care partners, this
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  community, you know, leave something in the comments.
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  If you're having struggling, you're having a bad day or you
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  know, you want some support put in the comments and others,
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  others read the comments, please, because people are
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  actually in the comments reaching out to others, not just
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  me. I don't have all the answers.
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  You know, I I have a story and I think I'm an OK storyteller and
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  this is my wheelhouse. This is what I like to do and I
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  have 15 years of experience with this thing.
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  I didn't read all this in a book.
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  I live it day-to-day. So I have stuff to give, but you
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  do too. And you know, if you want to
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  help read the comments and help me respond, If you have an
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  answer, answer it. Please don't, don't, don't look
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  at, don't just wait for me because it's not just about me.
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  And I want to be really clear about that.
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  This is a community. It's not priceless community.
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  It's a community. If you're a care partner and
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  you're having a great day or whatever, just introduce
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  yourself. Tell us your story.
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  Let's let's start doing life together because guess what,
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  we're all in this together. We're all going through the same
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  thing and we're all here and we're all here to support in
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  whatever way we can. I think it's amazing.
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  And someone asked the other day, my inner circle that I do and
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  you'll see something on the bottom that's, I think it's
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  scrolling around the bottom. That's just a group.
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  That's me, that's me and my group.
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  And if you want to be a part of that, please do, please join
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  that. It's for care partners as well.
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  It really is anybody, anybody who's dealing with Parkinson's
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  in their life. And just to be clear, I don't
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  make money on this channel. I don't make money on these, the
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  swag and things that are that are up there because everything
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  that we get, anything, anything, any dollar is someone who gives
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  us a super thanks and thank you for that.
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  Got our first one last week, a super thing that was amazing.
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  Every single dollar, we're going to reinvest it in getting the
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  word out there and getting more people involved and getting more
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  people that are out there struggling.
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  They don't know where to turn. We we're, we're, we're, we're,
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  we're going to, we spend that on that on advocacy, on outreach
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  and to reach more people. So if you give a, if you, if
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  you'll, if you do give a super thanks or whatever, join the
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  inner circle or buy a T-shirt or buy a mug, whatever it might be.
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  You're just helping get the word out.
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  You're helping supporting Parkinson's, you know, people
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  that are out there in the trenches trying to get that.
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  It helps kind of helps somebody, somebody helps somebody feel
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  better today. So I just say it like that.
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  But anyway, please introduce yourself and please let's,
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  let's, let's do life together. And remember, Parkinson's might
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  live in my body, but it's reach goes far beyond me.
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  It touches every relationship that I have.
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  It changes how I connect, how I show up and how I lean into
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  others. But here's the beauty in it all.
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  When Parkinson's shows up, love and show up too.
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  Believe me, it does. Peace, patience, understanding,
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  grace. It doesn't make it easy, but it
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  does make it possible. And we don't get through this
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  alone. We get through this together.
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  So if this episode hits home and you've felt the ripple effect of
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  Parkinson's in your relationships, drop a comment
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  below if you know my story and you can go back and watch or
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  listen to the other podcasts I went through, you know, a
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  divorce. So I, I didn't work out.
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  Someone didn't want to be with me.
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  That sounds really rough, but no, So I get it.
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  And Parkinson's does affect relationships.
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  So comment below. Let's let's talk about it and
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  don't forget like and subscribe if you can, please.
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  And share this with somebody you who know is walking this path
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  with you. Share it with your caregiver.
• 11:06
  Sit down with them if you're watching this or, and, or just
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  send it to them, share it to them and let them know you love
• 11:12
  them. Let them know you're thankful
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  for them and let them know that you get it right.
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  This is live with Parkinson's. The good, the bad, the reality.
• 11:21
  I'm Bryce, really thankful for you being part of us, being part
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  of this and being part of us. You have a great week.
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  Parkinson's may be part of your life, but it doesn't get to
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  define it. Thanks for listening to Living
• 11:37
  with Parkinson's, The good, the bad, and the Reality.
• 11:41
  If this episode moved you, helped you, or reminded you
• 11:45
  you're not alone, share it with someone who needs to hear it.
• 11:48
  Want to go deeper? The Inner Circle is waiting.
• 11:51
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 11:55
  Bryce. You'll find the link in the show
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  notes. Until next time, keep showing up
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  and keep doing life today.