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Transcript

Parkinson’s Tracking: Stop Guessing Your Meds (Start Predicting Your Days) · Living with Parkinson’s | Bryce Perry

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  Have you ever had one of those brutal Parkinson days that just
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  hit you completely out of the blue?
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  Yeah. You know, those days you wake up
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  feeling fine, and then out of nowhere, your body just goes,
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  Nope, not today. Well, what if I told you there's
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  actually a way to see those bad days coming?
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  Because I've learned after 15 years with Parkinson's how to
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  spot the warning signs, how to track them and how to use that
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  data to take back control. And today, I'm going to show you
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  exactly how I do it. This is Part 1 of a three-part
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  series on tracking your Parkinson's.
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  Today, the five things I track every single day.
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  The next episode, how to decode the patterns in your data.
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  And Saturday, how to take this tracking to your neurologist and
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  get real results. So if you're tired of feeling
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  blindsided by bad days, then this series is for you.
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  And let's get going. 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, I am Bryce and welcome to
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  Doing Life today. And if you're new here, this
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  channel is all about living well with Parkinson's, real life,
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  real talk and real community. And this week we're going to
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  dive into something that's changed my life tracking.
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  Not complicated spreadsheets, not expensive apps.
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  Just five simple things that help me predict my best days,
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  avoid my worst days, and show my doctor exactly what's working
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  and what's not. OK, let's get straight into this
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  because here's the thing about Parkinson's.
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  It feels random. One day you're fine, the next
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  day you can barely move and you have no idea why.
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  But here's what I've learned. Parkinson's isn't as random as
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  it feels. There are patterns, there's
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  triggers, there's timing issues. The problem is, if you're not
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  tracking, you're not going to see them.
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  See, I spent five years of my Parkinson's journey thinking
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  about my thinking that my body was just betraying me randomly.
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  And then I started writing things down, and suddenly I
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  could see it. Late lunches were killing my
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  afternoon dose. Poor sleep on Sundays meant a
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  rough Monday. Stress on Tuesday meant tremors
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  on Wednesday. And once I started seeing these
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  patterns, I could do something about them.
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  And that's what we're doing this week.
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  All right, quick thing. If you're tracking along with me
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  this week, hit that like button so I know that you're here and
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  subscribe because Thursday's episode on pattern recognition
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  builds directly on this and you don't want to miss it.
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  All right, let's talk about the five things that I track every
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  single day. Grab a grab a pen, open up your
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  note notes app, whatever you use.
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  Because these five things are the foundation of everything
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  when it comes to tracking thing #1 medication, dose.
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  Write down what you took and how much.
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  Not just I took my meds, OK, but 10 AM, one tablet levitopa, 25
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  by 100. Why?
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  Because when you're tracking patterns, you need to know
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  exactly what what was in your system.
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  As an example, if you had a great afternoon, was it because
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  you took your full dose? Or did you actually accidentally
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  take half a dose and your body responded better?
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  You don't know unless you write it down.
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  OK, here's the second thing. The time you took it, and this
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  is huge. Most people think I take my meds
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  three times a day. That's consistent.
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  But when I started tracking actual times, I realized that my
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  three times a day or my every three hours was all over the
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  place. Monday 8:00 AM, Monday 1:00 PM
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  and 6:00 PM and Tuesday 9/2 and seven, Wednesday 7:30.
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  You know, 1235, you know whatever.
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  It's not if it's not consistent, it's chaos.
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  And guess what? My symptoms were chaotic too.
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  You know, once I locked in my timing, same, you know, meds on
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  time every time my symptoms smoothed out.
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  So write down the exact time every time, right?
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  Not morning, but 843. OK, here's the third thing.
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  When did that kick in? When did those meds kick in?
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  How long after you took that that Med did you feel them start
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  to work? For me, it's usually 25 to 30
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  minutes. Some days it's an hour, some
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  other days it's 20 minutes. Why does that matter?
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  Because if you're kick in time gets longer, that's a red flag.
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  It might mean that you're eating too close to your dose, that
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  your gut absorption is changing your door.
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  Your dose needs some adjusting. Track it and start to notice the
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  patterns. Don't guess anymore.
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  All right, here's the fourth thing that I write that I track
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  when it wore off. Now that is the most important
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  thing that people miss. You take your meds, they work,
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  and then they stop working. But when exactly did they stop?
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  Was it 3 hours? Was it 4 hours?
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  Was it 2 1/2 hours? Write it down and track it.
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  Because if your meds are supposed to last four hours but
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  they're only lasting 3, that's the conversation that you need
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  to have with your neurologist. And if you can't have that
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  conversation without data, like you just can't do it without
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  data. And here's the thing #5 outside
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  influences. Now this is everything else that
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  can affect your symptoms. Food.
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  Did you eat protein close to your dose?
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  Sleep. Did you get less than six hours
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  last night? Stress.
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  Did you have a rough conversation?
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  Did you have stressful appointment?
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  An exercise? Did you work out?
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  Did you walk? Did you do nothing?
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  Did you move? Weather, Is it cold out?
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  Is it hot out? Is it humid?
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  I know this sounds like a lot but you don't need to track
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  everything everyday, just track what you notice.
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  OK? If you had a bad afternoon,
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  write it down. Slept poorly last night or ate
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  lunch late right? Don't make the menu what you
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  ate. Just ate lunch late.
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  And over time, you'll start to see which outside influences
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  matter the most to you, OK. And what have the biggest effect
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  on you. OK, so those are the five things
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  simple right? Now, if you're thinking, Bryce,
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  I don't want to track all this in a notebook, I get it.
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  Well, listen, I've got a simple tracker template.
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  There's a link in the description.
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  Just grab it and use it and make it your own.
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  It's just a free thing you can download.
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  It's nothing fancy, OK at all. And if this is helping you, hit
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  that subscribe button because Thursday's episode is where this
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  gets really powerful. Really powerful.
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  Now I'm going to show you how this works and why or why this
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  works. A few years ago, I had three
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  days in a one week where my afternoon meds just didn't seem
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  to work. My first thought was great,
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  Parkinson's is levelled up again.
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  But then I looked at my notes. You know, Monday late lunch.
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  You know, Thursday lunch at 2:00 instead of noon, Saturday lunch
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  at 1:45. All three days I'd eaten late.
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  Now here's the thing. You know this protein and
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  levodopa, they compete for absorption, right?
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  The protein and levodopa are like putting 2 toddlers in the
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  back of a minivan and telling them not to fight over a piece
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  of candy. There, there, that's there.
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  It's impossible. So when I eat a big lunch with
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  protein close, you know, to my dose times, my meds don't absorb
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  that well. They really don't.
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  So I tested it the next week. I ate lunch at my regular time,
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  12:30 every day. And guess what?
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  My afternoon dose worked perfectly.
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  Pattern confirmed, problem solved.
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  And I never would just have figured that out if I wasn't
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  tracking. I would have been thinking, hmm,
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  I would have been trying to think back to last week.
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  What happened on Tuesday? What happened on Tuesday?
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  Quick little note, not a journal, not a huge journal, not
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  what you ate. Just quick note and you're off
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  to the races. Now, before I show you my
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  tracker or the tracker that I use, I'm going to bring it up on
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  the screen. Let me pass the microphone to
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  Carmen, my wife and care partner, because she caught
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  patterns that I completely missed.
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  And she has a little word for you today.
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  And here's what she had me say to you.
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  Hey everyone, Carmen here. One thing I've learned as
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  Bryce's care partner is I see patterns that he doesn't because
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  when you're living with Parkinson's, you're in survival
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  mode a lot. You're just trying to get
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  through the day. But I'm watching from the
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  outside and I noticed things like Bryce even more tired every
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  Tuesday for the past month. What's different on Mondays?
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  Turns out his Monday, his Monday evening yoga class was
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  exhausting his dopamine reserves.
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  He switches to Wednesday mornings.
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  Problem solved. So if you're a care partner
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  watching this, your observations matter and they matter a lot.
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  Write them down and share them gently.
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  You might be seeing patterns that your that your person just
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  cannot see yet. And that's exactly right.
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  Carmen, Carmen's notes have saved me more time than I can
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  count. I'm telling you right now.
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  And if you're a care partner, grab that tracker template too,
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  and track what you're seeing. If, if it helps both of you, it
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  helps both of you. Like, think about that.
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  You track, they track and compare notes, right?
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  And we'll see who's seen the truth.
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  All right, let me show you the tracker that I actually use.
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  OK, now it's not fancy. It's a simple table with six
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  columns. Date, dose, and time kicked in,
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  wore off, symptoms, outside influences.
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  That's it. And every morning I fill in.
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  I fill in yesterday's row. Takes me two minutes.
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  At the end of the week, I review it and I look to see if there's
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  a pattern. That's the system.
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  You can use a notebook, you can use the template that's in the
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  description. You can use your phone note app.
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  It doesn't matter to start and start today.
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  Don't wait for the next big thing or the app or something
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  bigger and brighter and better. I don't care if it's the back of
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  a napkin to start writing it down.
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  Then track it consistently. OK, here's what's going to
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  happen if you start tracking this week, Week one, you're just
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  collecting data. It might feel pointless, but
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  stick with it. So again, you're not looking for
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  patterns, you're just collecting.
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  That's all you're doing. Week 2 you'll start to notice
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  small patterns. Huh.
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  I always feel worse on Wednesdays.
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  Interesting. And then by the third week
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  you'll start testing theories. What if I move by Wednesday dose
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  30 minutes earlier? By the 4th week you're going to
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  have real data to show your neurologist and they'll actually
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  listen. Because you're not guessing,
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  you're coming in with facts. And it isn't magic.
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  It's just paying attention. But paying attention is how you
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  take back control. OK, now tracking is 1 one thing,
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  right? But the real power comes in
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  decoding the patterns. And that's what we're going to
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  cover off in the next episode, what your Parkinson's tracking
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  data is really telling you. I'm going to break down timing
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  patterns and food interactions, environmental triggers, and how
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  to test your theories. OK, so it's huge, so hit
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  subscribe if you don't, so you don't miss it.
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  This series only works if you watch all three parts.
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  Now a quick solo spotlight shout out to actually, they want to be
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  anonymous, but that's fine. But somebody in the inner circle
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  who started tracking two weeks ago, they start tracking their
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  meds two weeks ago and discovered that their evening
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  stiffness was directly linked to her, to them, them skipping
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  their afternoon walk. OK, she added.
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  The walk back in stiffness dropped by 40%.
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  That's the power of tracking. I'm so proud of you.
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  You know who you are. I gave it up obviously, said
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  she. But you know who you are and I'm
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  so proud of you. That's in your circle.
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  And OK, so here's some homework this week, actually this the
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  next couple of days, download the tracker from the link in the
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  description. It's free.
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  Just download it, print it off OK.
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  And I want you to start tracking these five things for the next
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  two days. Come back for episode 2 on
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  Thursday, right? And if you're doing this with
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  me, drop a comment in the in the comments saying hashtag start
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  tracking. So I know you're in.
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  And on Thursday, we're going to bring them to the video with you
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  and we're going to go through them.
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  And I'm going to show you some things that are going to blow
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  your mind. OK.
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  And hey, you know what? We're almost 15,000 people in
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  this YouTube community. And every week, we're figuring
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  out how to live better with Parkinson's, just doing it one
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  day at a time, one step at a time.
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  So thank you for being here, and thank you for showing up.
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  And hey, you didn't think I was going to leave you without the
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  prices of the episode, did you? You can't fix what you can't
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  see. So start tracking.
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  There you go. That was a quick one.
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  Until Thursday. Keep showing up.
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  You keep tracking. And hey, you keep doing life and
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  keep doing live. Today, I'll see you on Thursday
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  with your tracker. Let's go.
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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
• 12:59
  with Parkinson's, the good, the bad, and the reality.
• 13:03
  If this episode moved you, helped you, or reminded you
• 13:07
  you're not alone, share it with someone who needs to hear it.
• 13:10
  Want to go deeper? The inner server was waiting
• 13:13
  monthly Zoom calls, 24/7 community, and a Direct Line to
• 13:17
  Bryce. You'll find the link in the show
• 13:19
  notes. Until next time, keep showing up
• 13:23
  and keep doing life today.