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Transcript

Parkinson’s Patterns: What Your Tracking Data Is REALLY Telling You · Living with Parkinson’s | Bryce Perry

• 0:00
  Are you like me? Do you ever wonder why your
• 0:02
  Parkinson's symptoms are smooth one day and totally
• 0:05
  unpredictable the next? Why your meds last forever on
• 0:08
  Tuesday but barely do anything on Wednesday?
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  Because for years, that was me, too.
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  I tried everything to figure it out.
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  Fancy apps contemplated complicated spreadsheets,
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  journals I'd abandoned by Day 4. Nothing helped me to understand
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  why my days were so different. And I know a lot of you feel the
• 0:24
  same. You're trying to make sense of
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  this body that keeps changing the rules.
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  And then one day I found the simplest tracking system ever.
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  No apps, no tech, no stress. And I've used it every day for
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  eight years. And today I'm going to show you
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  how to actually read your tracking so you finally
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  understand your on times, your off times, and the patterns that
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  you didn't even know were shaping your day.
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  Welcome to Living with Parkinson's, The Good, the Bad
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  and the reality. Real talk, real life, real
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  community with Bryce Perry. Let's begin well.
• 1:00
  Welcome back and if you're new here, I'm Bryce and I've been
• 1:02
  living with Parkinson's now for over 15 years.
• 1:06
  And around here we break everything down into real talk.
• 1:08
  No jargon, no lectures, no guilt, just the truth about
• 1:12
  living with Parkinson's and how to actually make your life
• 1:14
  easier. And hey, if that sounds like
• 1:17
  something you need, then hit subscribe.
• 1:19
  I'd really have love to have you stick around and stick around
• 1:22
  with me till the very end because the Bryce system at the
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  end of this episode telling you this one hits home and it might
• 1:28
  be a little bit of A twist in there.
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  That might just be a little bit too true.
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  All right, let's get into this and remember this is episode 2
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  of our three-part tracking series.
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  Episode 1 was all about what to write down in the very beginning
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  and today is about how to understand it.
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  And then in episode 3, coming up next, that's the one where we're
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  going to take all of this tracking data straight into your
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  neurologist office and actually get results.
• 1:51
  I'm going to give you the exact script that I use when I talk to
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  my doctor. But first I want to hear from
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  you. Drop a comment and tell me how
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  tracking went yesterday, right? Anything surprising?
• 2:00
  Anything confusing? I love reading your stuff and I
• 2:03
  read every single comment. All right, well let's get into
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  the good stuff. Let's talk about calculating
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  your on time, OK? And on time is that stretch of
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  time where your medications are doing what they're supposed to
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  do, right? You took your pill, you waited,
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  you started to feel the stiffness ease or whatever,
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  whatever your symptoms are. The tremor softened, your
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  movement got easier, and that was the start of your on time
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  window. So let's walk through it like
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  we're sitting at the kitchen table, OK?
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  Somebody takes their meds at 8:00 AM.
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  They feel them. They feel them kick in, let's
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  say at 8:45. Symptoms start creeping back in
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  around 11:30. Now that's their on time, right?
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  8:45 to 11:30 makes sense. Easy, straightforward.
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  It's real life turned into real information, right?
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  And if you've already figured out your own morning on time,
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  put morning in the comments. I want to cheer you along.
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  OK? So that was very simple. 8:45 to
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  11:30, that's your on time. So let's calculate our off time.
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  OK, now it's just a simple, but nobody ever explains it like
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  this. You're off time is is the
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  stretch after your symptoms return until your next dose
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  kicks in. So using the same example, the
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  same person that feels as if they felt their symptoms return
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  at 11:30, OK, the next dose then kicks in at 12:40.
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  So that's about 70 minutes of off time.
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  Now this is where tracking becomes so powerful because once
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  you can see both your on times and your and your off times,
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  your whole day starts to make a lot more sense.
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  Now, if you've noticed any off times creeping in during the
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  afternoon, hit that like button. So I know that this is starting
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  to hit home. OK, let's just hammer that like
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  button and see everybody's the same in these ways.
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  OK, So why your meds behave this way?
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  Well, let's talk about that. Why does it happen?
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  And you know me, we're going to do this in plain English.
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  I don't want to get all sciency on you, but inside your body,
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  levodopa burns fast, right? Half of it is gone about 90
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  minutes after you take it. And that's called the half life,
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  which basically means that your body is a levodopa furnace,
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  right? It burns, it uses it, and then
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  it moves on. So for most people, meds last
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  somewhere between 2:00 and 4:00 hours.
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  And here's the fun part. Life jumps.
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  Life jump kicks your schedule every single day.
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  Sleep, stress, protein. Timing, right?
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  Walking more than usual. Walking less than usual.
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  Being anxious, being excited. Weather, humidity, family
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  arguments, Right. The car alarm goes off at 6:00
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  AM. The cat's scratching at the
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  window. You know what I mean, right?
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  All of it can change your medication timing.
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  Unbelievable. And tracking let's you see which
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  of those things are messing with your day.
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  Now how about this? If life messes, if life messes
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  with your meds this week, drop a Yep in the comments.
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  Let's get a little honesty going down down there.
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  Yep. Tell you what, life just gets in
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  the way. OK, so now let's look at these
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  patterns because this is the important part.
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  You're going to start seeing patterns if you start tracking
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  this the way I'm telling you to do it.
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  And as I go through these, I wanted you to check in with
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  yourself, OK? If one sounds like your life,
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  say so in the comments because trust me, someone else is going
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  to say the same or thinking the same.
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  But here's pattern. Here's an example.
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  Pattern number one, this is a classic, OK?
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  This is what I call the breakfast effect.
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  OK, someone takes their meds at, let's say 8:00 AM.
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  Most days they kick in at 8:45. Beautiful, predictable, right?
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  You know it. You know when to start feeling
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  it. But on the days they skip
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  breakfast, nothing happened till 9:20 and they're standing there
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  thinking, are my meds broken today?
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  No, it's just that your stomach and your digestion were saying
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  like, Hey, you changed the plan. So I changed the plan the the
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  timing. Now can that happen?
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  Absolutely it happens. Talk to your neighbor, talk to
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  your neighbor, talk to somebody, put it in the comments and at
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  breakfast, if you all of a sudden are starting to realize
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  when you look at this, if your meds are affected differently
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  when you have around breakfast time, just like breakfast in the
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  comments, you'll be shocked by how many people say yes or like
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  it because breakfast can mess with your levidopa.
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  OK, Now once you notice that you start discovering other things,
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  OK, like this here, here's another example and this one
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  hits a lot of people. OK, I call it the the 3:00 PM
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  crash OK right around 3:00 PM for a lot of people, things drop
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  the fog, the heaviness, the Why do my my legs weigh 80 lbs
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  feeling. Most people assume that their
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  meds are just wearing off early. But when you start to track it
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  for a few days, you see it's usually sleep.
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  Parkinson's sleep is rough, right?
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  It's like pretending to rest while your brain is hosting A
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  rave. It's crazy.
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  So in that situation, it's not the meds failing.
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  It's a tired brain dragging everything down.
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  And by 3:00, your brains like, I am so tired because we didn't
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  sleep last night that I'm going to just stop working.
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  So there, if you're if you're a 3:00 PM crasher, hit that like
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  button so I don't feel alone. And as another example, OK, and
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  this one shows up in tracking all the time.
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  And I call this one the the weekend Miracle.
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  OK so here's a fun one. Someone's meds last 2 1/2 hours
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  on Monday to Friday. OK so they take their meds and
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  about they you know when they start they're all kicking in
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  till when they start kicking out like 2 1/2 hours.
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  OK Monday to Friday. But suddenly on Saturday boom
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  they're lasting 3 1/2 hours and they're thinking, did I
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  magically get cured for the weekend?
• 8:09
  Well no, it's stress relief. Your nervous system relaxes and
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  your meds go further. Weekend dopamine is undefeated.
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  Did you know that? So that that stress, that stress
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  relief, it's just things loosen up and they just can get there.
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  And so how about, you know, if your weekends feel easier for
• 8:28
  you, tell me the comments, tell everybody in the comments.
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  Yeah, weekends. Like I noticed that.
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  I can see that. But you'll don't start really
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  seeing this until you start writing it down and tracking it.
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  That's the important part. If you can start circling,
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  circling things like, hey, it happened again.
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  Hey, it happened again and hey, it happened again.
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  And they can start you start putting the pieces together of
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  this puzzle. OK.
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  And that actually leads me to today's solo spotlight.
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  You know, for the people doing this entirely on their own, no
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  care partner, no second set of eyes, just you, you know,
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  learning your symptoms and taking control of your day.
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  And listen, you're stronger than you think.
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  So here's a tip that's going to make tracking easier for you.
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  Use your phone to mark the moment that your symptoms
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  change. A quick voice memo, a timestamp,
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  right? Even a simple note button.
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  Because the hardest part of tracking alone is remembering
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  exactly when the shift happened. And that one habit keeps your
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  data honest, right? And it takes all the pressure
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  off your memory. True story.
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  So. And if you're tracking solo,
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  give me a solo in the comments just so I can cheer you on
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  because I love cheering you on. Now let's shift over to
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  something really important and something that everybody's
• 9:44
  starting to love around here. It's Carmen's care partner
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  Corner, and this is written in her words, and I'm going to read
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  it exactly the way she wrote it. And here's what she had to say
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  to this. When Bryce started tracking his
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  symptoms, it didn't just help him, it helped me understand
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  him. Before tracking, I only saw the
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  outside. I saw the moments he slowed down
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  or looked uncomfortable, but I didn't always understand why.
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  Once he started writing down his on times and his off times and
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  the patterns in between, it gave me what I call a map to his day.
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  And suddenly I could see which moments were part of the
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  disease, not personal or emotional.
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  Tracking doesn't just change the experience for the person with
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  Parkinson's, it changes it for the people who love them too.
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  Thank you Carmen. So let's wrap this up a little
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  bit here. You know now how to find your on
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  time and you know how to find your off time.
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  And if you're still struggling or you're still kind of
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  confused, go back and re watch that first part again.
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  Just calculate your on time and your off time.
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  OK, That's that's really, really important.
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  And you know now how to see why your meds work the way they do.
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  OK, and you're starting to spot the patterns that shape your
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  day. You start seeing things that
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  start to all of a sudden get the aha moments.
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  And what I would love, I'd love to know the number one thing
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  that you learned from tracking this week.
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  OK, So if you've learned something already, let me know
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  in the comments. Just say, hey, I saw something
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  that was similar from this day and this day.
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  And I'm telling you, the more you do this, the easier it's
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  going to get and the more consistent you're going to be.
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  And I would love you to tell me in the comments, if you were
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  able today, tomorrow or yesterday, calculate how much on
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  time and off time you had because that would be cool.
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  So in the comments, it's been like, you know, whatever, I'm
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  just throwing numbers out there, 5 on time hours and six off time
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  hours, whatever it is. It'd be interesting to see, you
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  know, what you're dealing with and what other people are
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  dealing with and how some are so much different than than ours
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  because this is a community, you know, it's not just about me
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  just spewing stuff. We need to make a conversation
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  about this. We need to talk about this and
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  we need to help each other through this.
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  And in the comments, if you don't understand, if you're
• 12:01
  struggling to understand it, please ask.
• 12:03
  And you know what? If you understand it and you see
• 12:05
  a comment, jump in there. Help them.
• 12:07
  It's not just about Bryce. OK, you know what is just about
• 12:12
  Bryce, though? The Bryceism of the episode.
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  And here it is with Parkinson's tracking is like turning on
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  subtitles for your body. It shows you what's happening,
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  even when the plot makes no sense.
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  And the twist? Some days my subtitles pop up
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  and just say Nope. Oh, yeah, yeah.
• 12:36
  All right. Well, if this helps you hit that
• 12:37
  like button and if it really helps the channel when you do
• 12:40
  that. So share this with somebody who
• 12:41
  needs it and make sure that you don't, that you're subscribed so
• 12:44
  you don't miss episode 3 because I'm going to give you my exact
• 12:48
  script that I use with my neurologist.
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  And I finally started getting results, right?
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  And I took it right out of my tracking.
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  There you go. So until next time, I thank you
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  so much for being here, thank you for being a part of this
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  channel, thank you for being a part of my life, and I'm happy
• 13:05
  that you're letting me into yours.
• 13:06
  Until next time, keep showing up, you keep being real, you
• 13:09
  keep tracking and you keep doing LIFE Today and I'll see you in
• 13:14
  the 3rd episode. Parkinson's may be part of your
• 13:19
  life, but it doesn't get to define it.
• 13:22
  Thanks for listening to Living with Parkinson's, The Good, the
• 13:25
  Bad, and the Reality. If this episode moved you,
• 13:29
  helped you, or reminded you you're not alone, share it with
• 13:32
  someone who needs to hear it. Want to go deeper?
• 13:36
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 13:39
  community, and a Direct Line to Bryce.
• 13:42
  You'll find the link in the show notes.
• 13:44
  Until next time, keep showing up and keep doing life today.