Latest / Living with Parkinson’s | Bryce Perry / The 3 questions Every Person with Parkinson’s Should be asking their Doctor.

Transcript

The 3 questions Every Person with Parkinson’s Should be asking their Doctor. · Living with Parkinson’s | Bryce Perry

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  Have you ever had one of those doctor's appointments where you
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  walk out thinking, I have no idea what just happened?
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  Yeah, well, me too. I'd sit across my neurologist,
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  nodding politely like a bobble head, trying to look like I
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  understood every word. Inside.
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  I was thinking, dopamine pathway.
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  What now? I'd get into the car and then
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  someone would say, So what did the doctor have to say?
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  And I'd go, good question. Well, that was my routine for
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  years until one day I finally realized that it wasn't that I
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  didn't understand Parkinson's, it was that I wasn't asking the
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  right questions. And I want to share with you
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  today those questions because they changed everything for me,
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  not just how I talk to my doctor, but now how I live and
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  stick with me till the very end. Because I'm going to share
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  something from Carmen's Care Partner Corner that'll hit home
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  for both care partners and for those of us living with
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  Parkinson's. And trust me, you do not want to
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  miss it. Welcome to Living with
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  Parkinson's, The Good, the Bad, and the Reality.
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  Real talk, real life, real community with Bryce Perry.
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  Let's begin. Hey everyone, I'm Bryce and
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  welcome back to Living with Parkinson's, The Good, the Bad,
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  and The Reality. And if you're new here, this
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  channel is all about the real talk, the stuff that nobody
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  tells you about Parkinson's mixed with humor, stories, and
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  hope. And to my loyal viewers and
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  listeners, thank you so much. You're the reason why this
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  community is growing into something that is way bigger
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  than me. And if you haven't yet, hit that
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  subscribe button so you don't miss what's coming next.
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  Because together, we're not just talking about Parkinson's, we're
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  changing how the world sees it. OK, let's dive into these three
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  questions that nobody likes to ask or nobody is asking their
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  doctor. And the first one is this.
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  When the when you're at your doctor's office, you say, what
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  does this mean to me specifically?
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  Now this is the question that flipped my appointments upside
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  down in a good way. You see, doctors talk in
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  averages. They talk about most people.
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  They talk about typical symptoms and common progression.
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  Have you heard that before? Put that typical symptoms,
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  common progression, you know, or most people in the comments
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  right now. Let's see that you're not alone
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  in that. But here's the truth.
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  Parkinson's doesn't do typical. I remember sitting in an
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  appointment early on and the doctor was explaining something
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  about motor fluctuations. I nodded the whole time.
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  I smiled like I understood. And then I went home and I
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  Googled it and I thought, I don't even think I'm
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  fluctuating. I'm just flatlining.
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  The next visit, I tried something different.
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  When he finished this long explanation, I said OK, but what
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  does that mean for me specifically?
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  Everything changed. He stopped typing, He turned
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  toward me, and for the first time he explained things in a
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  way that made sense for me and my body, me and my schedule, me
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  and my day-to-day life. And it wasn't about averages
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  anymore. It was about me, and I realized
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  that question doesn't just belong in the doctor's office,
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  it belongs everywhere. When I read new Parkinson's
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  research now, I always ask this What does this mean for me?
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  When someone online says they're trying a new supplement or
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  therapy, I ask what does that mean for me?
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  Because no two of us are the same.
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  We're all snowflakes. We're beautiful, unique, and
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  sometimes falling apart at the seams.
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  Well, the moment you stop comparing your journey to
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  someone else's journey and start asking, what does this mean for
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  me? That's when you start owning
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  your story instead of letting Parkinson's write it for you.
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  If you ever walked out on an appointment more confused than
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  when you went in, drop a comment that says hashtag for me because
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  I want to know how many of us, how many of us have been there.
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  And trust me, you're not alone. You watch the hashtag for me as
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  I hit this page. OK, question #2 here we go.
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  How will I know when it's time to adjust my medication?
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  Now this one is huge and it is what?
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  It's one that most of us don't think to ask until we're already
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  struggling. So we're already thinking about.
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  I wonder if or you start Googling or watching these,
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  watching podcasts, trying to figure out if it's your turn, if
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  you should change your meds. See, there's an invisible line
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  between I'm doing fine and something's not right.
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  And most of us cross it without realizing it.
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  For me, it wasn't a tremor that gave it away.
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  It was somebody saying, you're moving slower than usual today.
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  And I'd always say, of course, no, no, no, I'm fine.
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  They'd say, Bryce, you're cutting your toast slower than
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  grandma. And that's when I realized that
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  my timing, it's starting to slip.
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  My meds were wearing off sooner. And but because it happened
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  gradually, you know, I didn't notice it right at 1st.
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  And when I finally brought it up to my neurologist, I asked how
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  will I know when it's time to adjust?
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  He told me the signs. Well, price increase, stiffness
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  in stiffness, shorter on times, changes in speech, changes in
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  energy. Huh.
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  Well, I wish I would have asked that in the very beginning so
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  that when I started noticing these signs, I would have
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  noticed the signs, not when it was already happening.
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  So that's why I say it's so important that you have to have
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  these questions in your back pocket right at the very
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  beginning. When will I know it's time to
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  change my meds? And do I leave that on the very
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  first visit? Is that like he tells me that
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  and I wait for it? No.
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  Every time I go in, I say here's where I'm at today.
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  This is what I'm going through today.
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  When will I know? When will I know?
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  Because I want to be ahead of the game, not behind it.
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  Now if that's you, you want to be ahead of the game, just put.
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  Ahead in the comments, 'cause I want to be ahead and that's when
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  I started tracking everything. I now I track it and I track it
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  every time. And you know what?
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  I have a big surprise coming, and I'm building a Track my Meds
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  hashtag challenge because I'm not.
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  It's not just about taking pills, it's about noticing
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  patterns, knowing when your body's whispering that
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  something's changing before it starts shouting.
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  And here's the thing, that idea goes beyond medication.
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  In life, we all need to know when it's time to adjust, when
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  it's time to slow down, when it's time to push forward, when
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  it's time to change something that's not working anymore.
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  And that's not a weakness, it's awareness.
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  So if you've ever walked out on an appointment more confused
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  than when you went in, drop a comment that says hashtag for me
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  because I want to know how many of us have been there?
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  OK, now that leads us into question #2 this is a big one.
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  And this is one that again, many people don't ask.
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  And I've, I've asked a lot of MD, movement disorder
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  specialist, and a lot of neurologist.
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  I said, how many times do people ask you this question?
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  And it's very few and far between.
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  So let's change that. Let's start changing that today.
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  Here it is, ready every appointment.
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  How will I know when it's time to adjust my medication?
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  This one is huge, and it's one of the it's one that most of us
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  don't think to ask until we're already struggling.
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  You know, there's this invisible line between I'm doing fine and
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  something's not right. And most of us cross it without
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  even realizing it. You know, for me, it wasn't a
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  tremor that gave it away. It was somebody saying to me,
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  you're moving slower than usual today.
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  And I'd say, no, I'm fine. And they'd say, Bryce, you're
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  cutting your toast slower than my grandma.
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  Then I realized my timing had started to slip.
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  My meds were wearing off sooner, but because it happened so
• 8:06
  gradually, I didn't notice. When I finally brought it up to
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  my neurologist, I asked how will I know when it's time to adjust?
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  And he told me the signs increase stiffness, shorter on
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  times, changes in speech, changes in energy.
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  And that's when I started tracking it, started tracking my
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  meds all the time. And I tracked them every time
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  now. And I've got a little surprise
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  coming over in the middle of building right now, a track my
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  meds challenge. Because it's not just about
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  tracking pills. It's about noticing patterns,
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  knowing when your body's whispering that something's
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  changing before it starts shouting.
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  Now, here's the thing. That idea goes beyond
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  medication. In life, we all need to know
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  when it's time to adjust, when it's time to slow down, or when
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  it's time to push forward. When it's time to change
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  something that's not working anymore.
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  And that's not a weakness, it's an awareness.
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  So if you're part of our hashtag Track My Meds crew, type that
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  hashtag in the comments right now.
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  And if you haven't started yet, now is the time.
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  Because tracking your meds is really about tracking yourself.
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  It really is. And again, I'll have some more
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  information coming up about that right away.
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  I hope to be launching this challenge.
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  And maybe, just maybe I'd have a tracker for you to start using.
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  And I'm talking like maybe next episode.
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  Just hang in there, stay tuned. It's coming, it's coming.
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  All right, let's move on to question #3 and here it is.
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  This is the question that none of us like to ask or don't ask.
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  What can I be doing between appointments to slow my
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  progression now? This is the one that changes
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  your mindset. For years, I thought my doctor's
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  appointments were like a reset button.
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  I'd go in, I'd report what was happening, I'd get a new
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  prescription or a tweak, and I'd wait for the next visit.
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  But between appointments, I was just surviving.
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  Until one day, I finally asked that right question.
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  What can I do between appointments?
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  And my doctor said a lot. He talked about exercise.
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  He talked about sleep. He talked about stress,
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  connections, and learning, all the things that help slow
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  progression. And that's when it clicked.
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  My real work happens between appointments, not at the
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  appointments. So now I move every day, even
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  when I don't want to. And no, I don't.
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  I'm not out running marathons. Some days my big workout is just
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  making it up the stairs without swearing.
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  And when and when he says exercise, I said define
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  exercise. Well, apparently salsa dancing
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  doesn't count unless you actually move your feet.
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  Who knew that? But here's the truth.
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  Asking this question puts the power back into your hands
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  because it shifts from reactive to proactive.
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  And it's not just about what you can do, it's about what you
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  choose to do. And that's a different kind of
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  power. And that's where I want to share
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  something from Carmen's care partner Corner, as she wanted me
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  to read this to you. Ready.
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  Hi everyone, It's Carmen for the care partners.
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  Our version of that question might be this.
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  What can I do to help without burning out because you can't
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  pour from an empty cup? For a long time, I thought being
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  strong meant saying I'm fine and when I wasn't, even when I
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  wasn't. But that's not strength, that's
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  survival, and it doesn't help anyone.
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  I've learned that taking care of myself as part of taking care of
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  Bryce, and it means resting when I need to, reaching out for
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  support, and being honest when I'm overwhelmed.
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  So if your care partner watching this, remember you matter in
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  this equation as well and you don't have to have all the
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  answers. You have to keep showing up and
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  you can go to the doctor as well.
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  And when Bryce is asking, Bryce is asking.
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  When Bryce asks those questions, what can I do in between
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  appointments? I ask the same things.
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  What can I do in between appointments to better support
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  him and support myself better? That's interesting.
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  That's really good. So there you go.
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  See, this is not a narcissistic disease.
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  It's not just about us, right? It's about our partners and our
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  people that are caring for us as well.
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  And they need that same question.
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  What can I, what can they do in between appointments that are
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  going to help them, right? Help them make it through to the
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  next appointment. It's almost making it from
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  appointment to appointment. So you see, that's why I keep
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  her around, right? She's the wise one.
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  But here's the bottom line. These questions, they're not
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  just for your doctor, they're for your life.
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  Now, what do I mean by that? What?
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  Like specifically, what do I mean?
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  You know what I mean this. What does it mean for me
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  specifically, right? These three questions, how will
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  I know when it's time to adjust? And what can I be doing between
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  appointments? Write them down, take them with
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  you. And don't just ask them once,
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  ask them again and again and again again as things change.
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  Because the person who gets good at asking questions gets good
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  answers, and the person who stays silent gets what's ever
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  left. And if you're ready to take
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  control of your next appointment type, I'm asking the questions
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  in the comments right now. Let's flood the comments with
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  that phrase. A movement of people who are
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  done being passive and ready to participate in their care.
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  If you want to keep learning how to do that, join us in the inner
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  circle. That's where we dive deeper,
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  share winds and wobbles, and talk about what's really works.
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  The links below in the description and hey, if you're
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  newly diagnosed or you're ready now to take another step, a
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  deeper step in your, in your walk in this new life of yours
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  of Parkinson's, start with the boot camp.
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  It's where you'll learn the basics, understanding your meds
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  and build your foundation for what's coming next.
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  The links are in the description below.
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  And I think there is only 9 spaces left, only nine seats
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  left. So get them before they get out.
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  And with that, you've made it. Here it is.
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  You've unlocked today's price system with Parkinson's.
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  Silence changes nothing. The right questions can change
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  everything. Well, there you go.
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  Make sure you're asking the right questions.
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  And you keep doing that. And you know what?
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  You keep showing up, keep speaking out, keep asking
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  questions, and you keep doing life today.