Latest / Living with Parkinson’s | Bryce Perry / What I Would Say to Someone Newly Diagnosed with Parkinson’s Today

Transcript

What I Would Say to Someone Newly Diagnosed with Parkinson’s Today · Living with Parkinson’s | Bryce Perry

• 0:01
  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.
• 0:25
  Years into the battle, This is the truth behind the tremor.
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  Let's begin. If I could sit down today with
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  the version of me who just got diagnosed with Parkinson's 15
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  years ago, man would I have a lot to say.
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  Because nothing can fully prepare you for this road.
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  But there are things I wish I'd known, things that could have
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  saved me. Some fear, some shame, and some
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  wasted energy. So that I want to share with
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  you. The 2, the newly diagnosed
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  specifically. Or maybe it's still the one
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  still struggling, right? What I would say if I could go
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  back in time, stick around, this is the conversation I wish I
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  would have had or wish someone would have had with me.
• 1:11
  Hey everyone, welcome back to Living with Parkinson's, the
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  good, the bad, and the reality. And if you're new here, I'm
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  Bryce. This is a place for real talk
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  about Parkinson's, the good moments, the ugly moments, the
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  hilarious accidents and and hope that somehow that threads
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  through it all. If you're finding value in these
• 1:28
  conversations, consider hitting the subscribe button.
• 1:30
  There's no pressure and there's no expectations.
• 1:32
  It's just invitation to stay connected.
• 1:34
  And if you want to go deeper, don't forget that Inner Circle
• 1:36
  is coming up soon. I talked about it quite a bit.
• 1:38
  It's a private membership where we're going to meet live on Zoom
• 1:41
  once a month. No pretending, no filters, just
• 1:43
  real life with people who get it.
• 1:45
  You find the link in the description below.
• 1:47
  Or if you're watching on YouTube, you can just click
• 1:49
  join. All right, let's dive into what
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  I wish someone had told me 15 years ago.
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  So when I was first diagnosed, I was 40 years old, right?
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  I felt like my identity shattered overnight, like
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  somehow the real me had been erased with one sentence from a
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  neurologist. And here's what I'd say now.
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  You are still you. Parkinson's changes some things
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  about your body, but it does not erase who you really are.
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  I'm still funny. I'm still smart.
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  I'm still worthy. I'm still needed.
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  The world still needs you just as much as did yesterday.
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  Think about the day you got diagnosed.
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  The day before you got diagnosed.
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  You didn't know you had Parkinson's and you maybe had
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  still had value, maybe thought you had value.
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  And guess what? Just because those words were
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  said didn't mean you didn't have it.
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  The day before. You just didn't know you didn't
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  have it. You might have lived life a
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  little differently. Does that make sense?
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  I went like that went deep. It was like I, I didn't know
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  where I was heading with that. It was going like really deep,
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  but I could have gone a lot deeper.
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  But you know, again, the year before I was diagnosed, I knew
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  there was something wrong. I twitched, my hand twitched.
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  I knew everything was OK or not OK.
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  I knew there's something going on with my body, right?
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  But I was still doing things. I was still living life.
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  And then all of a sudden this diagnosis comes in and I'm like,
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  huh, well man, maybe I better stop doing this and doing this
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  'cause now I have it. Well, I had it the day before
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  that. I had it the week before that
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  when I was golfing. So just because I got diagnosed
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  today doesn't mean all of a sudden I need to stop and change
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  and stop immediately. Think about that for 10 seconds.
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  And if that resonates with you, hit that like button.
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  Anyway, there was this time, maybe a year in, where I felt
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  like I disappeared. You know, friends didn't know
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  what to say, and work felt different.
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  And even in a crowd, I felt invisible.
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  But what I didn't know back then was that this feeling wasn't
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  about Parkinson's stealing my words.
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  It was about me learning how to stand in my new reality.
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  You're not invisible, and you're not broken.
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  You're still right here, OK? You're still here.
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  It's still you. Early on, I thought I had to be
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  the brave one, the guy who smiled through everything, the
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  one who was handling it well. The one that had to be strong
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  for my children, had to be strong for my parents, had to be
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  strong for my friends, had to be strong at work.
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  What I know now is you don't have to be strong every day.
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  You're allowed to have bad days. You're allowed to cry.
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  You're allowed to be scared, you're allowed to be fearful.
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  Strength isn't about pretending. It's about refusing to give up
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  even when it's hard. Say it again.
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  Strength isn't about pretending what strength is.
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  It's about refusing to give up even when it's hard.
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  You know, I remember sitting in my car outside the pharmacy one
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  night, overwhelmed by meds and some side effect, and I was
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  thinking, I don't know if I can keep doing this.
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  I really said I I don't know. You know what?
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  It's OK to have those nights. It's OK to feel broken for a
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  minute. It really is.
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  It's they're tough and I get that.
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  I get it. I've had the nights, I've had
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  the nights going. I just don't know.
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  I don't want to do this. I don't know.
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  I just don't think I can do this for another 15 years or another
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  five years or even another day. Done, done.
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  Why me? Stupid damn thing?
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  I'm done. And it's OK to have those
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  moments, like I said. But the next morning I get back
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  up. You get back up.
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  You move forward one messy, beautiful step at a time.
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  And if there's one thing that Parkinson's teaches you really
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  fast is that community matters. And I know I've said it a
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  million times, but not everyone will understand you.
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  Some friends will fade, and that's painful.
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  It's really painful, but it's OK.
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  The good news is there's a whole tribe of people right here,
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  right now who do understand. So you need to find your people,
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  even if it's just one person to start.
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  You need to find somebody who can relate or some people that
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  can relate, really. You know, for years, I kept my
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  diagnosis private. Only a few people knew, my
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  family, family and a couple of really close friends.
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  But it wasn't until I finally started connecting with others
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  and facing that, you know, others that were facing those
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  same battles with me and the same things that I was going
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  through. And I was like, oh, my God, you
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  too. And oh, my God, I'm not crazy.
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  And. Oh, my God.
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  Yeah. Stay with us, we'll be right.
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  Back. I get it, I get that.
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  Well, then some of those battles, they started to change
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  for me, and not because the disease got easier, but because
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  I wasn't carrying it alone anymore.
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  Something wild about that. And if you're here today, you're
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  already taking that step. You really are.
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  You're not alone and you're looking, you're seeking.
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  But you know, in those early days, I was obsessed with what
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  ifs. What if I lose my independence?
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  What if I can't work anymore? What if I can't do this?
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  What if I can't do that? What if I can't do this?
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  What happens when this happens? And here's what I'd say to me.
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  Here's what I would say now. Your future is still unwritten.
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  Don't live in fear of a future that hasn't happened yet.
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  Plan wisely and adapt smartly. But then don't chain yourself to
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  the worst case scenarios. There's life ahead.
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  There's a good life ahead. It's beautiful, but messy and
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  meaningful. But that's what we're doing.
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  All those fears, you're chaining yourself to these worst, worst
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  scenarios, right? Oh my God, what if it's what if
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  I can't walk and I'm drilling down the side?
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  I mean, it's always the worst, the worst, the worst, the worst.
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  And stop doing that. Stop living for the future.
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  I mean, so this, I was going to say that sounds almost bizarre,
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  right? Like stop living for your future
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  and start living. But but here's the thing.
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  We live with this thing. I call it a thing.
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  I sometimes hate calling a disease.
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  So what I'm going to say, we live in this thing that that we
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  don't know. We don't know what the we don't
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  know. We don't know how long we don't
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  know how much longer we can do certain things.
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  We don't know what that future looks like.
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  Do we really? If we get honest, we just don't
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  know. We can look at other people's
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  lives and try to figure it out where we're at in our process
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  and what stage we're at and all this kind of stuff, but it
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  doesn't matter. So if you're worried about a
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  couple things and I and when I first got diagnosed, I was like,
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  why me? How did I get this?
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  What was it from? What was it from?
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  Was it this was it? I banged my head playing hockey
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  too many times growing up. And that concussion led to this.
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  I said my grandmother had it, so it must have been genetics and I
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  better get tested and see this. And what about my kids having
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  it? I was trying to figure out why I
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  got it. And then all of a sudden I
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  realized that, you know, we don't know enough about that
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  yet. Do we really?
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  Researchers don't know enough about that yet.
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  So, so let's stop doing that. At this point in your life, if
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  you have Parkinson's, it doesn't matter why you got it at now.
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  It really doesn't now. It doesn't matter.
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  You've got it and that's it. You've got it and that's it.
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  So let's move on from like, why me?
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  Why me? Or obviously I'm sorry.
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  Why? How did I get this?
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  Where did it come from? What?
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  We know who whose fault is this? It's really what we're trying to
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  do. We're trying to lay and blame it
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  something or somebody. It's what we're trying to do,
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  Right? Does that resonate with you?
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  Yeah. And if that's you put that in
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  the comments, let me know. Remember, I read every comment,
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  so I'd love to know your thoughts on that.
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  You know, are you trying to figure out why all the time?
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  So I had to lay that down because what I realized is I was
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  trying so hard and spending my days trying to figure this thing
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  out, trying to trying to figure out where it came from and then
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  where it was going. I want to know where it was
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  going. I was reading, watching, doing
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  things and studying and trying to figure out what tomorrow
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  might look like. And I was doing all that.
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  I realized that I wasn't living in today.
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  I wasn't living and, and, and I wasn't there.
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  I wasn't present. I wasn't enjoying that day.
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  I was studying, I was working, I was trying to figure things out.
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  And when you're you have this thing, you have Parkinson's and
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  you don't know how many good days you have left.
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  You don't know how long you have at home.
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  I'm hoping. I mean, I'm going for another
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  15. Come on, let's go.
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  Come with me. Let's do 15 more of these good
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  damn years. Why not, right?
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  Why not? We don't know.
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  But I'm not wasting one of them. I don't know.
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  And I'm not wasting one of them. And neither should you.
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  So some of my favorite memories, the deep conversations, the
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  funny disasters, the simple joys that have happened after my
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  diagnosis, I would have missed all of that.
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  I've given up early on. Now there's a strange, excuse
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  me, there's a strange pressure to keep up appearances after
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  diagnosis. It's crazy to pretend
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  everything's fine to, but Adaption isn't going to give up.
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  Sorry. Adaption isn't giving up.
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  It's winning smarter, winning smarter.
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  Use tools, ask for help, rest when you need to.
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  None of that makes you weak. It makes you resilient, right?
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  For example, for example, I've said this over and over again,
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  and but it's because it's so crazy.
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  It's a game changer for me. Like for example, that simple
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  tool, the pill bottle, timer cap, that damn thing has changed
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  my life. It really has.
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  Not glamorous, not fancy, but it saves my sanity.
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  Like, like little adaptations like that aren't giving in to
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  Parkinson's, they're reclaiming control.
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  No longer do I have to worry. Did I take?
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  When did I take my pills last? I look at my pill bottle and
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  tells me the countdown. Oh, I took my pills 2 hours and
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  40 minutes ago. That means I have 20 more
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  minutes to my next one. Crazy little game changer.
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  But it's, and again, it's not. There's nothing weak about it,
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  It's just why not? Why not?
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  So if you're newly diagnosed, or even if you've been fighting
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  this for a while, know this, you're still you.
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  You don't have to be strong every second and you deserve
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  community. Your future is still yours to
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  build and adaptation is a kind of victory.
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  And if this episode spoke to you, please hit that like button
• 12:07
  and leave me a comment. I read and reply to every one of
• 12:09
  them so personally. So if you're ready to connect
• 12:12
  deeper, I want you to come and check on the inner circle.
• 12:13
  I really do. I love some of you.
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  I mean, and you need to come. You join me.
• 12:18
  The links in the below. Click join or in the link in the
• 12:21
  description below. And if and if you're not ready
• 12:24
  yet, that's OK too. There's no pressure, there's no
• 12:26
  expectation. I love you all.
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  Just be present. Just be present here and be
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  present and let me know you're here.
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  Say hi, like the video, share the video and subscribe.
• 12:36
  And remember this, you're not alone.
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  Your story is far from over. And now guess what?
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  I'll see you in the next 1 and I hope you're feeling better.
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  Parkinson's may be part of your life, but it doesn't get to
• 12:52
  define it. Thanks for listening to Living
• 12:54
  with Parkinson's, The good, the bad, and the Reality.
• 12:58
  If this episode moved you, helped you, or reminded you
• 13:02
  you're not alone, share it with someone who needs to hear it.
• 13:05
  Want to go deeper? The Inner Circle is waiting.
• 13:08
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 13:12
  Bryce. You'll find the link in the show
• 13:14
  notes. Until next time, keep showing up
• 13:18
  and keep doing life today.