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Parkinson’s Medication Timing: 5 Mistakes That Make Your Symptoms Worse · Living with Parkinson’s | Bryce Perry

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  You know that feeling when you think you've finally nailed your
• 0:03
  medication schedule only to realize that Parkinson's had
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  other plans? Yeah, I've been there.
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  And what no one told me early on is that levodopa isn't a long
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  term roommate. It's more like a short term
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  guest. It comes in, it does the job,
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  and then it leaves before dinner.
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  So today I'm going to share the five biggest medication timing
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  mistakes that I've made and what I do now to make sure my meds
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  actually work for me instead of against me.
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  And stick around till the end. Because once you understand how
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  to keep this short term guest happy, your whole day will start
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  to feel oh so much smoother. 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, welcome back to
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  the channel. I'm Bryce and I was diagnosed
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  with Parkinson's at the age of 40 and I'm still doing life
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  today, 15 years later. So if you're new here, this
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  channel is all about the good, the bad and the reality of
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  Parkinson's, hopefully with a little bit of humor and a lot of
• 1:10
  heart. So hit that subscribe button and
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  let's start by looking at what really goes on inside your body
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  every time you take that little yellow pill.
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  And if you have the Parkinson's or love someone that does, you
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  know what I mean by the little yellow pill?
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  Anyway, here's the science. Here's the deal.
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  When you take levodopa, your body starts converting it into
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  dopamine, right? But that process is fast.
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  Within about 90 minutes, half of it's already gone.
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  And by the 3 1/2 to 4 hour mark, you're usually running on empty.
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  Think of it like your phone battery.
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  No matter how good your charger is, by mid afternoon you're back
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  in low power mode. Now if you add an inhibitor to
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  it like Primiprixal, make that battery last a bit longer.
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  But most of us are living on short charge cycles, which means
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  your timing isn't about guessing, it's about charging
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  before it dies. OK now, so now that you know how
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  short that battery life really is, let's talk about what drains
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  it faster, what slows it down, and how you can find your sweet
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  spot. OK, so if you've ever felt your
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  meds running out of steam before your next dose, hit that like
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  button and know that you're definitely not alone.
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  So let's talk about the first mistake.
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  And I call this one chasing the dose.
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  OK, chasing the dose. This one got me for years.
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  You know, you feel your meds wearing off.
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  You know, maybe the stiffness, fatigue, or the mental fog or
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  your symptoms, whatever the symptom is starts to come back
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  and you grab your next pill early, totally by instinct,
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  almost right? The problem is your body hasn't
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  processed the last dose yet. So when you start to stack your
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  pills, you're flooding your system, which leads to spikes,
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  crashes, and actually irritability.
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  So here's what I finally figured out.
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  Instead of reacting, I started tracking patterns.
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  I realized my off times hit at almost the same point every day.
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  So now I take my, my next full dose about 20 minutes before
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  that crash, not early out of panic, but early on purpose.
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  And that's the difference. Not early out of panic, but
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  early out of purpose. OK, That's why you track your
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  Mets. Now, when I say about stacking
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  them, you're going to find yourself in trouble.
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  It's when you're kind of like popping one in between and then
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  keeping that regular cadence going, right?
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  So you're kind of overdoing it. So instead of overdoing it, find
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  that rhythm and adjust. And of course, when I give you
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  when I give these types of tips, always check with your doctor
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  1st and your health, you know, whoever would be your
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  neurologist or your movement disorder specialist and, and
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  make sure that you kind of go with it with them.
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  OK, Now do it a little bit different today.
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  Carmen's corner right now coming right up, Carmen's care partner
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  corner, she is going to make a comment about all these
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  different tips. OK.
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  And so here's what Carmen has to say about care partners in this.
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  She said that she used to call those those panic pills, and now
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  she says you're finally driving the bus instead of running
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  behind it. And it's true.
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  Once I stopped chasing and started anticipating, my whole
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  day smoothed out. Now see, when you stack your
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  doses, dopamine spikes too quickly and the brain's
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  receptors, they they down regulate, meaning you get a
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  shorter relief the next time. But when you pace it evenly,
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  your brain finds the rhythm. It's not magic, it's chemistry,
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  and if you're solo, you live in the solo.
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  Don't have a care partner. If you live alone, use your
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  phone and note exactly when your meds were off for a few days and
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  when you see the pattern, that's when you try shifting your next
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  dose just 15 to 20 minutes earlier.
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  It's a game changer, I'm telling you.
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  How about this comment #chaser? If you've ever found yourself
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  topping up too early, because we've all been there.
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  There's no shame in that. Trust me.
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  When you're experimenting, it happens a lot.
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  OK, let's move on to mistake #2 I call this one burning through
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  your dopamine too fast. So if you ever had one of those
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  days where you're on fire, right?
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  You're working in the yard, you're cleaning the house,
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  you're fixing everything, right? That, that everything that's
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  been sitting there for months and then you crash like a brick
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  by mid afternoon. Been there too.
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  I've been there many times. So what's happening is you're
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  burning through dopamine faster. Physical activity, stress,
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  caffeine, even excitement, they all hit the gas pedal on your
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  dopamine usage. So here's the science behind
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  that. Your brain uses dopamine to
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  coordinate movement. So the more you move, the faster
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  you drain your supply. Now you add coffee or tea or and
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  then you accelerate the absorption absorption, which you
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  also then shorten the effect. Same with splitting or crushing
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  pills. They kick in faster but they
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  fade sooner. Even fizzy water can speed up
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  the process because it dissolves the pill, the pill faster in
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  your stomach. So again, think about what I
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  just said there, caffeine, fizzy water breaking up the pill.
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  So if you need to get some dopamine into your system
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  quicker, they all help you get it in quicker.
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  But again, there's no, that little yellow pill doesn't know
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  that's like, hey, I'm going in a little bit soon, so I'm going to
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  last longer. No, it still lasts what it's
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  going to last. So the quicker it gets absorbed
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  in your system, the quicker you're going to be out of it.
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  So you have to remember all that stuff when you're taking your
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  meds. So here's what I do now if I
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  know I've got a busy day, right, like say like home repairs or
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  travel, I shorten my window. And I used to start doing that.
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  I, when I started my medication, I was going in 4 hour doses,
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  right? Take my meds every four hours.
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  Well, when I had those busy days or I was really heavy travel
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  day, I would cut it down about 3 1/2 hours and sometimes three,
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  depends on how much I was going to do.
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  And and I hydrate like it's my job.
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  So really, really, really experiment and figure out what's
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  going on and drink lots of water.
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  And what is Carmen, the care partner corner expert have to
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  say about this? Well, she jokes that she can
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  tell when I've gone full handyman mode, right?
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  She'll say like, you're burning hot today, better top up the
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  tank. And she's usually right.
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  And if you live alone, plan your doses around your activity days.
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  You can't always avoid burning through dopamine, but you can
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  time your pills. You can time your refills
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  better. OK, so how about this drop out
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  an emoji wrench? If that sounds familiar, or if
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  caffeine has ever betrayed you before lunch.
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  You know, that's one thing. That's just caffeine.
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  I love, I love my coffee, but I just have to be careful and
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  watch how I'm doing. Now, be careful.
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  Sorry. Let me back up.
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  I'm going to say that I want to say that, right?
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  I want you to understand what I'm saying.
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  I don't have to be careful, right?
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  I listen. Parkinson's makes you do a lot
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  of things. It makes you study.
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  You do a lot of things. It makes you go tracking things
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  and everything else. So I the last thing I'm going to
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  do is try to figure out, oh, I can't have a coffee now because
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  I have meds coming up. No, that's why I don't plan
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  myself around. I just plan it around, OK?
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  And I understand when I understand what I'm doing and
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  how much I'm going to use and how it affects me and then I
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  adjust accordingly. OK.
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  Again, all with the under the guise of my doctor having been
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  having the ability to experiment with that.
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  OK, how about this mistake #3 and I call this one slowing your
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  system down. Now let's flip it.
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  Just like some things make your meds hit harder and faster,
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  other things put the brakes on it, and not in a good way.
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  Big, heavy meals, especially with protein or fat, they slow
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  down your stomach. Dehydration, same thing.
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  Your meds take the sites, the scenic route instead of the
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  express lane. OK, let's talk about
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  Constipation. Nobody loves it, but it matters,
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  you know, if your gut isn't if your gut isn't moving, your meds
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  aren't either. It's like sending a delivery
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  truck into rush hour traffic. It's plugged jammed.
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  Anyway, here's that. This is a see, levodopa is
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  absorbed in your small intestine.
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  If your food or let's be honest, your plumbing is backed up, your
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  medication literally can't get where it needs to get to on
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  time. So here's what helps me.
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  I never take my meds right after a big meal.
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  I stay hydrated. I, I, I eat lighter during the
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  day and I take my pills with water, sometimes even sparkling
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  water if I want to get that faster kick in.
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  And Carmen says that I that I finally drink like a responsible
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  adult. And she's not wrong.
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  I used to skip water and then wonder why my meds took forever
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  to work again. The more hydrated you are, the
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  better your meds are going to respond.
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  So here's another tip. Keep that bottle of water beside
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  your meds. It's simple, but it works.
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  And if you struggle with Constipation, you need to talk
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  to your doctor. Solving that can feel like
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  upgrading your entire medication plan.
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  It really can. And there is meds to help you.
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  So how about this? Hit that, hit that like if
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  you've ever had your meds take forever to kick in.
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  And tell me in the comments what you've found help speed things
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  up. I'd really like to know that as
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  we move on to mistake #4 inconsistent timing.
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  Parkinson's loves routine. I've told you this and your meds
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  love it too. Missing a dose by even 20 or 30
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  minutes doesn't seem like a big deal.
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  Until it is. And that's when you get those
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  weird midday dips, the unpredictable mood swings, and
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  that awkward. Why am I off already feeling?
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  You see when you delay doses, dopamine levels crash before the
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  next dose hits. Those drops trigger stress
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  hormones like cortisol and which which can make fatigue, anxiety
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  and tremors way worse. So now I keep what I call a
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  metromone timing like every 3 1/2 hours.
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  Well it used to be every 3 1/2 hours.
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  Now it's every two hours and 45 minutes give or take 10 minutes.
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  I dose up and when I do my whole day staying steadier and when
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  the closer I get to that exact time, the better it is.
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  Okay. And from the Carmen Care partner
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  corner, she says this. She says Bryce is more reliable
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  when our oven timer is more reliable than our oven timer
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  now. And that's a compliment, I
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  think. I think that is, yeah.
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  Anyway, she likes it. She likes the reliability,
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  right, Because for her as a care partner, it's a heck of a lot
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  easier to kind of help me right when I'm steady.
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  You know how that goes. Think about, like the think
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  about, you know, you know, if you're when your your children
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  or your grandchildren and when, when they're up and down, up and
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  down, like what they got sugar rush.
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  It's like a sugar rush with kids.
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  Like they go wild and you're like, Oh my God, just like take
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  a pill, like chill out, you know, just for a little bit, you
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  know, and then and then or if they're too down, right, you
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  have to, you're like, oh, what's wrong?
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  What's going on? So you're having to go over care
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  for them, right, and try to figure out what's going on.
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  That's like us, we're like little kids on sugar.
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  Okay. So from a care partners
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  perspective, the more level we are, the easier it is for them
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  to help take care of us. And again, so I hope that was a
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  compliment. Now here's a tip, if alarms
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  drive you nuts, then label your bodies or your bodies label your
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  bottles right with actual times to have like a little scratch
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  pen with a piece of tape, you know, 6301011130.
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  Whatever time you do, it's visual accountability.
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  But I'm telling you that if you haven't heard of this tip
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  before, and I'll tell you again, the pill cap timer, $6 at
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  Amazon, it's a lifesaver. You get 2 in a pack.
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  It's so cheap. Look in the description, you'll
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  see, you'll see a link for it. The one that I use, it's like 6
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  bucks. And I'm telling you, man, I use
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  that thing like it's going out of style and I know exactly when
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  I took my meds last. OK, comment, Metromome.
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  If you've ever missed it, I'm going to tell you how to spell
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  it. If you've ever missed a dose and
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  you instantly regretted it, metromome.
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  All right, let's move on to tip #5 this is huge.
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  Ignoring gut health and hydration.
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  Now, this one doesn't get talked about enough.
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  Your gut is your first pharmacy. If it's not happy, your meds
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  aren't going to be happy either. Again, Constipation,
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  dehydration, or even certain supplements can all affect
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  absorption. I used to think it didn't
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  matter. Then I fixed it and my meds
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  started kicking in faster and lasting longer and I'm like, my
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  God, this works. So what's that science behind
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  that? Well, hydration keeps your
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  stomach empty normally, fiber keeps your intestines moving,
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  and both make levodopa more predictable.
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  The gut and the brain are in constant conversation, and
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  Parkinson's makes that line glitchy.
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  So supporting your gut is supporting your brain.
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  And Carmen says she can tell. When I haven't had enough water
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  because my meds take forever to kick in and work, I get cranky.
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  OK, fair enough. Here's a tip.
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  Add electrolytes or lemon to your water to make it easier to
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  drink. A hydrated brain is a happy
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  brain, and a happy brain use dopamine better.
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  All right, if you needed this reminder, go grab a glass of
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  water right now. Seriously.
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  I'll wait. I'm just kidding.
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  I don't know what I'm doing. OK, So what actually works?
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  Well, here's my rhythm today. OK, I usually take my first dose
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  about 6:30 AM. That's usually what time I get
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  out. And then every two hours and 45
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  minutes, like clockwork, I take my next dose.
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  I shift a bit based on my day, shorter if I'm active, right,
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  normal if I'm if I'm normal, right?
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  And I keep an eye on what speed things up and what slows them
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  down. It's not perfect, but it is
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  actually predictable. Now here's some more science for
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  you. You have to come to realize
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  this, that levodopa, it's it doesn't have a long life, OK?
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  And that's why consistency wins, because steady timing keeps your
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  brain from swinging between feast and famine.
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  Think of it like keeping your phone on a on a slow, constant
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  charge instead of letting it die and sprinting for the charger.
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  Wouldn't that be would not be a change, right?
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  I mean, I'm the worst at that. I am so bad at keep my my phone
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  charged. It's crazy.
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  But one more thing. I want you to realize that
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  Levodopa's peak time after you take it is around 90 minutes,
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  OK, to two hours. That is like the middle, that's
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  the middle. So when you start realizing
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  that, that two hours after you, about two hours and 15 minutes
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  after you take that levodopa, it's already starting to
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  dissipate on your system. You know the these are averages,
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  but the average is for assumption after you take it 20
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  to 30 minutes before it kicks in because it's starting to, it has
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  to get up and going, right? It has to get in there and get
• 15:39
  in there. OK.
• 15:40
  And then you realize that an hour later it's already starting
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  to decline down. That's why I, I urge you that
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  you know, if you're, you know, in this journey and you're,
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  you're not taking them, you're not taking your meds, your
• 15:53
  levodopa based on a time period. If it's just like, hey, one in
• 15:56
  the morning, 1:00 at night or 1:00 in the afternoon, I'd urge
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  you to talk to your doctor about getting on a regular rhythm
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  because that's where you want to keep yourself.
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  And again, it's better for your brain, it's better for your
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  body. Like I just told you to keep
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  that rhythm. OK, Wow, you're getting
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  technical today, aren't we? Well, if you made it this far, I
• 16:17
  do have today's Bryces for you. And, and here you go.
• 16:20
  And I hope you like this one. And this is it with Parkinson's,
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  Your meds are like coffee. It's not about how strong it is.
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  It's about when you drink it. So there you go.
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  Those are the five medication timing mistakes that that can
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  make your Parkinson's worse and more importantly, how to fix
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  them. And remember, Parkinson's might
• 16:42
  be unpredictable, but your patterns aren't.
• 16:46
  Learn them, work with them, and life starts to feel a little
• 16:51
  smoother there. There you go.
• 16:53
  So hit subscribe. Hey, if you're if you're still
• 16:54
  watching, you haven't subscribed, you might as well,
• 16:57
  you know, this gave you something new to try.
• 16:59
  Drop a comment which one of these hit home and I'd love to
• 17:03
  share that with me. And if you know somebody that
• 17:05
  might have needed this video, please share it with them.
• 17:09
  That would be amazing. I love you.
• 17:11
  I love what's going on here. I love this movement we're on.
• 17:14
  I love everybody else and you know, right now as it from last
• 17:19
  week, we've had so many new subscribers again, we're
• 17:22
  averaging almost 2000 subscribers a month.
• 17:24
  Like we haven't been going long. So if you're new here, welcome,
• 17:27
  welcome to the welcome to the community and be a part of it.
• 17:30
  Come join us, OK? And until next time, I want you
• 17:33
  to keep showing up. I want you to keep laughing and
• 17:36
  I'd love you to keep doing life today and we'll see you.
• 17:42
  Parkinson's may be part of your life that doesn't get to define
• 17:46
  it. Thanks for listening to Living
• 17:48
  with Parkinson's, the good, the bad, and the Reality.
• 17:52
  If this episode moved you and helped you or reminded you
• 17:55
  you're not alone, share it with someone who needs to hear it.
• 17:59
  Want to go deeper? The Inner Circle is waiting.
• 18:02
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• 18:06
  Bryce. You'll find the link in the show
• 18:08
  notes. Until next time, keep showing up
• 18:11
  and keep doing life today.