Latest / Living with Parkinson’s | Bryce Perry / Why Doesn’t My Doctor Tell Me What Stage I’m In?

Transcript

Why Doesn’t My Doctor Tell Me What Stage I’m In? · 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. I've had Parkinson's for 15
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  years and my doctor has never once told me what stage I'm in.
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  Not once. And you know what?
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  That might actually be a good thing.
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  If you've ever found yourself wondering what stage am I in?
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  Or hearing others talk about being in stage 2 or 4 or the
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  early stage and you're feeling confused or left out.
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  We'll stick around because today we're going to break down the
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  five official Parkinson's stages and why your doctor might never
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  bring them up and why they don't always reflect what you're
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  actually going through. Well, welcome to the channel.
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  I want to thank my loyal viewers for always sticking with me.
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  And if you're new here, my name is Bryce.
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  And this is living with Parkinson's, the good, the bad,
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  and the reality. And this is doing life today.
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  And our channel is all about providing strength and hope and
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  support to individuals living with Parkinson's disease and
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  their caregivers. You know, I share motivational
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  stories, tips, and real talk to help you navigate life with
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  Parkinson's. And if that sounds like what you
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  need, then go ahead and subscribe because today's
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  episode is a big one. Why?
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  My doctor never told me what Parkinson's stage I'm in in 15
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  years. And I want to get right into it.
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  So when people talk about Parkinson's stages, they're
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  usually referring to something called the Hohn and Yar scale.
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  And it was developed in 1967. And it breaks Parkinson's down
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  into 5 stages, mostly based on motor symptoms.
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  And let's go through them quickly.
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  OK, stage 1 symptoms on one side of the body might be a tremor,
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  slightly slight stiffness, pretty mild overall.
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  OK, stage 1. Stage 2 symptoms on both sides,
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  but still fully independent. Stage 3, Balance issues begin.
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  You might have some falls, but you're still walking and you're
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  functioning on your own. OK.
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  Stage 4 Things get more limiting though.
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  You may still walk, but daily tasks become harder.
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  OK And stage 5, You likely at this stage need a wheelchair or
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  assistance to stand and move safely.
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  OK, now that's the textbook version.
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  But as you know, and if you've been with me and watched any
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  other broadcast, you know Parkinson's doesn't live in a
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  textbook. Now, let's be honest.
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  Some days I feel like I'm on stage one.
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  I'm moving and I'm filming and I'm grooving, right?
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  Other days I freeze up in the hallway with one sock on, a
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  spoonful of peanut butter in my hand, and a blank stare.
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  It's like I forgot what year it was.
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  Parkinson's isn't linear. It's not like you move from one
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  clean stage to the next like chapters in a book.
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  It's more like, well, if you remember those old CD players
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  that would randomly skip tracks while you're listening to them,
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  that's Parkinson's, right? You're listening to track 3 and
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  suddenly it's like, surprise, you're on track 9.
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  And I was going to hum a few bars, but you'd, you'd probably
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  flip the stage, flip the channel.
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  But one morning, you know, I feel like I'm 40 again.
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  The afternoon I feel like I'm 90 and nothing changes but time and
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  the tension in my neck, right? That's the only thing.
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  The only difference is time. So why don't most doctors talk
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  to you about what stage you're in?
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  Well, there's a simple answer. Because it doesn't.
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  Because it's not actually that helpful.
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  Let me say that again. Why are some doctors not talking
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  about it? And why don't I ask people?
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  Or why don't I talk about it? Because it really is not
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  helpful. You know, I once asked my
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  neurologist, he is he, I once asked my neurologist if he
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  thought I was at stage 3. And this is what he said.
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  He looked at me and he said this Bryce, I treat the person in
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  front of me, not the stage that they're supposed to be in.
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  And that stuck with me. Most neurologist today don't use
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  staging in everyday conversation.
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  And, and here's the reasons why. Because number one, it doesn't
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  account for non motor symptoms like sleep issues and cognitive
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  changes or mood #2 it doesn't guide treatment all that well.
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  And #3 it can be emotionally discouraging for a patient, you
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  know, especially if you're somebody, you know, someone who
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  hear someone who hears this like you're stage 4 right?
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  And think that means that they're beyond hope, which isn't
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  true. Like I'm in stage 4.
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  Oh my God, there's only 5 stages.
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  I've got one year left. What am I going to do, you know?
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  And, and it's, I'm done. So let's talk through that.
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  If doctors don't bring it up, then why do we talk about it so
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  much in the Parkinson's community, right?
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  You know why? Because it gives, it gives us a
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  sense of, of location. It's a reference point, a way to
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  measure where we think we are. It's a form of control in
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  disease, in a disease that totally that feels totally
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  uncontrollable, but it also creates comparison and sometimes
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  even judgement. You know, I once got a comment
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  that said, you say you've been, you say you've had Parkinson's
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  for 15 years. Well, you don't look like you're
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  in stage 5, except like, credibility depended on being
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  visibly worse, right? Listen, no one gets a trophy for
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  advancing faster. Parkinson's progression is not a
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  competition. I hope I didn't step on some
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  toes with that. But let me ask you this.
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  Has your doctor ever told you what stage you're in?
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  Right in the comments. If if you hit first, first
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  question in the comments, did your has your doctor ever told
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  you what stage you're in? Again, 15 years in not one time
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  has my doctor ever told me what stage I'm in.
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  But I want to know has your doctor told you?
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  And then I want you to do this. End the comment.
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  Yes, yes or no? But yes, my doctors told me no,
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  my hat. No, he hasn't.
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  OK, now listen, this is your next comment.
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  Was it helpful or just confusing?
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  Drop it in the comments. I remember I read every single
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  comment. I reply and read to every
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  comment. So let's get a conversation
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  started. I want to know.
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  Maybe I'm all by myself out here.
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  Maybe I'm by myself, but let me know.
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  Drop it in the comments. OK?
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  Now what should we focus on instead?
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  Instead of chasing a stage, I'd rather focus on this.
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  How am I feeling today? Are my meds still working?
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  What's getting harder lately? What can I still do on my own?
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  And what do I need help with? OK, these are the questions that
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  lead to action to better care. Now, if you weren't paying
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  attention and he said what leads to action to better care, go
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  back, just rewind and listen to it again because that's what
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  leads to action. OK, not a number, not a label,
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  but a conversation. If you want to talk to your
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  doctor, ask this. What symptoms should I be
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  watching more closely? What changes if my function
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  matters most right now, right? What changes in function matters
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  motor? Oh my God, I'm getting fired up
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  here. Can you tell that?
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  Give me a like for that one. What changes in motor matter
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  most right now? That's far more useful than what
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  stage am I in? Don't waste your hey, listen,
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  you go once every six months for what, 30 minutes?
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  Don't waste your 30 minutes trying to figure out what stage
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  you're in. OK?
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  You know, actually it was funny because Carmen and I were
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  talking about this this exact episode while we're eating
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  dinner the other night, you know, and well, I guess I was
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  eating. She she was watching me drop my
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  fork all the time for the third time.
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  It was crazy. It was ridiculous.
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  And we were just going to go with like, do you think you're
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  in stage 3? Right?
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  We can. She finally kind of said, and I
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  said I looked at her. I said like, honestly, I think
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  that I'm in the hold the wall while you pee stage.
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  She smiled and said good morning.
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  So morning, Bryce. I said exactly.
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  OK. Like, that's what it What's it
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  matter? With Parkinson's, stages might
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  try to define you, but your spirit doesn't have to follow
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  the script. Think about that.
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  You don't have to. Who cares?
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  I'm in stage 5. I'm doomed.
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  I'm finished. No, you're not.
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  No, you're not. How?
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  Ask the doctor. How long does stage 5 last?
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  Oh yeah. And does it last that long for
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  everybody? We're all different.
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  Remember that? We're snowflakes, right?
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  We're all different. Everybody's a bit different.
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  So there's no comparison here. It really doesn't matter what
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  stage you're at. So if your doctors never
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  mentioned your stage, then don't panic.
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  And that doesn't mean you're being ignored it.
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  It might mean your care is more personalized than you realize.
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  Think of that one. Because you are not your stage.
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  You are not your worst day. You are not a number on a scale
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  from one to five. You're a human being doing your
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  best. And that's more than enough
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  there. Now, if this episode gave you
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  something to think about or even made you laugh or made you fired
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  up, then hit the like button and share this with somebody that
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  you care about and subscribe to the channel.
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  And if you want to go deeper, get into the inner circle, come
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  on. We meet live on Zoom.
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  Zoom in with me. There's chats going on there.
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  We can discuss this deeper and further.
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  There's a link in the description below.
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  And guess what? I'm fired up now.
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  So until next time, I'm Bryce doing life with you, Parkinson's
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  style, just like you. And we're not just counting
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  stages. We're doing life today together,
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  together. Now you get out there and you do
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  some life and not care what stage you're in.
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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
• 9:24
  with Parkinson's, the good, the bad, and the reality.
• 9:29
  If this episode moved you, helped you, or reminded you
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  you're not alone. Share it with someone who needs
• 9:34
  to hear it. Want to go deeper?
• 9:37
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
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  community, and a Direct Line to Bryce.
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  You'll find the link in the show notes.
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  Until next time, keep showing up and keep doing life today.