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Parkinson’s Medication: 5 Questions Your Doctor Wishes You Would Ask · Living with Parkinson’s | Bryce Perry

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  You ever walk out of your neurologist's office feeling
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  like you nailed it? You sat there nodding, taking it
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  all in, and then 5 minutes later, you're in the parking lot
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  thinking, wait, what just happened in there?
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  Didn't even ask the one question I needed answered.
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  Yeah, I've been there. I did that for three years.
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  And you know what? It cost me hundreds of hours of
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  feeling good that I didn't have to lose.
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  So today we're going to fix that.
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  We're talking about the five medication questions that could
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  totally change your Parkinson's treatment.
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  Because when you ask the right questions, you get better
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  results, better understanding, and better days and stick around
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  till the end. Because I've got 2 braces in
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  this one. One's funny with some science
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  behind it, and the other, well, let's just say it hits you in
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  the heart. 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. Well, welcome back friends.
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  If you're new here, my name is Bryce and this is Living with
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  Parkinson's, The Good, the bad, and the Reality.
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  Now this podcast is all about bringing strength, hope, and
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  community to people living with Parkinson's and their care
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  partners with a mix of real talk, science made simple, and
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  let's be honest, hopefully a few laughs along the way.
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  So if that sounds like something you need, hit that subscribe
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  button and join us. Now before we jump into the
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  questions, let's talk about what what's actually happening inside
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  your body. OK?
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  Levodopa is basically your brains stand in for dopamine.
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  It's the lead singer of the Parkinson's band.
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  The problem is it's it's half life is about 90 minutes,
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  meaning it burns through your system faster than your first
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  cup of coffee on a Monday morning.
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  Your brain converts it into dopamine, but only after it gets
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  through your stomach, your intestines, your blood, and
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  finally crosses that cross crosses the blood brain barrier,
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  which is like airport security for your neurons.
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  And if your stomach's busy digesting breakfast or if you
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  got protein and iron cutting in line, your poor levodopa stuck
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  waiting with his shoes off and a belt in a tray.
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  All right, let's get into the questions that actually matter,
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  the ones your doctors wishes you'd ask.
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  Here's question #1 how do I know if my dose is still right or if
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  my brain is just changing? OK, when I was first diagnosed,
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  I thought, OK, they'll give me a dose and that's my dose forever.
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  Spoiler alert, you know this. Nope.
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  For years I thought my meds had stopped working.
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  My stiffness came back earlier in the day.
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  My tremor crept in mid afternoon and I thought, well, there it
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  is. I'm it's, I'm just getting
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  worse. It's Parkinson's.
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  But I wasn't getting worse. My brain was changing.
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  So here's the science part. As Parkinson's progresses, your
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  brain stores less dopamine. Imagine like a sponge, a sponge
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  that a sponge that used to hold a cup of water, but now it only
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  holds like 1/2 a cup of water. The medicine's the same, the
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  sponge just can't soak up as much.
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  So what used to last five hours now maybe only last three.
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  Now that's not failure, just chemistry.
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  And once I learned that, my doctor and I adjusted the
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  timing. Not more pills, just smaller,
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  smaller spacing. It's like tuning a guitar.
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  Same strings, just a tighter rhythm.
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  And that made all the difference.
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  So if you've been thinking that your meds don't work anymore,
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  don't panic. Ask your doctor.
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  This. Has my brain changed or does my
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  schedule need to? That question can save you a ton
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  of frustration. OK, question #2 could any of my
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  other meds or supplements be messing with my Parkinson's
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  meds? OK, now this one's a game
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  changer, and it's one that hardly anyone asks now.
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  I used to take my levodopa, my iron supplement, and my morning
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  protein shake all at once. Basically, I was throwing AI was
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  like throwing a block party in my stomach and then wondering
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  why nobody was getting through the door.
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  I thought just maybe the bouncers were keeping them out.
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  But here's what's happening. Levodopa has to hitch a ride on
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  the same transport truck as amino acids and the and and iron
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  to get absorbed. So if your breakfast is full of
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  protein or you're taking iron, it's like 15 trucks trying to
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  merge into a one lane highway. Dopamine sitting there in
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  traffic honking like let me, let me go, let me in.
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  Even caffeine can play games with dopamine, with metabolism.
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  It speeds it up, which is why you might burn through your meds
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  faster on those high energy days and high coffee days.
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  And certain antidepressants and blood pressure meds can
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  interfere too. So best advice, just bring your
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  full list of prescriptions, supplements, even over the
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  counter stuff to your neurologist.
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  Don't guess because sometimes it's not that your levodopa is
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  broken, it's just being bullied by your vitamin shelf.
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  And I know I remember this other time.
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  Cough medicine, I don't know if you know this or not, but like
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  there's different anyway. There's different types of
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  things that you need to to to kind of regulate with levodopa.
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  You can take with a lot of things, but there are things
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  that mixing up the timing of it with the other meds can be
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  concerning, not concerning, but just make your levodopa not work
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  as well. So what I do is, you know, if
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  I'm got cough medicine or I've been going through that or if
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  my, my general doctor, my family doctor has prescribed me
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  something, I make sure I take it with me to my appointments every
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  time just so he, my my neurologist can see it, He can
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  go through it, look at it and he can kind of advise me if there's
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  any concerns that or if concerns on timing or anything like that.
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  So that's a big tip. That's a power tip.
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  All right. And if you have ever, ever,
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  ever, ever left a doctor's office and thought, what an
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  idiot, I totally forgot that maybe you're not as hard on
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  yourself as I am. But what a what a silly, what a
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  silly. But you know what?
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  I just can't believe I didn't ask that question.
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  Me too in the comments, please. Yes, you know me.
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  It's all about me making myself feel not so bad.
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  Anyway, let's move on to question #3 what can I do when
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  my meds start wearing off early or are taking longer to kick in?
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  Now this one hit me hard. For years, I'd feel my meds
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  wearing off and I'd immediately pop another pill like I was
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  rebooting a frozen laptop. I didn't even realize there was
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  a better way, you know? And I told you a lot about this
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  in the last episode, but here's the deal.
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  When you start noticing the off periods where the symptoms creep
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  back in before your next dose, and that's your cue to talk to
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  your doctor, it might mean adding adding an inhibitator or
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  enhancer or just in timing or splitting doses.
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  Now here's some science. Wearing off happens because your
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  body clears levodopa faster as dopamine buffering decreases.
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  Think of it like a bathtub that used to hold hot hold water for
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  hours, but now drains faster. You're refilling it more often,
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  not because it's you're broken, it's just because the plumbing's
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  changing. Now the delayed on the delayed
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  on issue, you know, that's usually digestion.
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  If your stomach's busy or you've eaten, eaten a big meal, your
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  pills just sitting there thinking anytime now.
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  And on those days, I'll wait longer after eating or take my
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  meds with fizzy water. Carbonation helps move it along
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  faster or break it up, bunch it up, smash it up.
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  It gets in there quicker. And then there's Carmen.
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  She's turned this whole process into an Olympic sport of
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  coordination. She's got alarms on her phone,
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  backup alarms on mine. And if she's out, I'll get texts
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  all the time saying take your, take your pills now, take your
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  pills now. It's teamwork.
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  And Speaking of that, here's something Carmen wanted me to
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  read to you as part of Carmen's Care Partner Corner.
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  You know, I asked Carmen what she wanted other care partners
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  to know about helping with medications, and she actually
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  wrote this down for me to share with you.
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  When it comes to helping Bryce with his meds, I've learned it's
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  not about being in control, it's about being In Sync.
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  Early on, I thought I could just remind him here and there, but
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  Parkinson's doesn't care about reminders.
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  It's all about rhythm. So now I've got alarms on my
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  phone too when his goes off. Mine does too.
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  And if I'm not at home, I'll send him a quick text.
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  Hey, meds, meds, honey, meds, honey.
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  Sometimes he already has. Sometimes he's about to and
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  sometimes, well, let's just say Parkinson's brain had other
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  plans. The point is, we tag team it.
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  It's not about babysitting. It's about backing each other
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  up. And here's the other part,
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  Grace, so much grace. There are days when the timings
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  off or you forgot or I forget, or we both think the other ones
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  got it covered. You can't get mad at that.
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  It's not, it's, it's not forgetfulness, it's Parkinson's.
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  So if you're a care partner, my advice is this, don't just set
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  reminders, build systems, don't just manage symptoms, build
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  patients and celebrate the winds.
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  If you get, if you both get through a full day of meds on
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  time, that's a high 5 moment. Awesome.
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  Thank you, Carmen. That's Carmen.
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  Practical and funny and somehow always right.
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  All right, here's question #4 how will I know if what I'm
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  feeling is dyskinesia and what can we do about it?
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  Yes, the bonus dance feature. You know, the first time it
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  happened, I thought, well, look at me, I'm getting my cardio in
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  without even leaving the chair. That joke wore off really quick.
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  Here's the science. Dyskinesia isn't your medicine
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  breaking you, it's your brain getting too much dopamine at
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  once. It's like turn, it's like
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  turning up the volume to high. The song is still good, but now
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  the speakers are shaking and distorted.
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  This is where your doctor can smooth it out by splitting
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  doses, adding slower release options, or adjusting timing.
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  That's really important and actually leads me into what I,
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  you know, I have a prices right here.
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  So this is your first prices. You get a bonus 1 today.
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  This is an early one. There's another one coming
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  later, but here it is. Levodopa doesn't cause
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  Parkinson's to progress, but the fear of levodopa can cause your
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  life to stop progressing. That's a shot out to someone
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  who's delaying their medication starting.
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  OK. And that like that one hits me
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  personally, I was scared of dyskinesia.
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  Like when I, when I, when I heard about it, I was like, Oh
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  my gosh, but I'd already started my meds.
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  So I'm like, oh man, what did I do here?
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  Did I start too soon? Did I, did I not start too soon?
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  Oh man, I was freaking out. I was like, what's happening?
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  And when I finally realized that taking my my meds early and
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  right off the bat, I was going to save myself wasting time,
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  wasting good years waiting to feel bad enough to start my
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  meds. So like in everything else, it's
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  time to be proactive, not reactive.
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  Don't wait until you feel you're bad enough to take levodopa at
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  all. So ask your ask your doctor now,
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  not later. How do we know when to adjust
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  for dyskinesia before it gets worse?
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  And I promise you, you'll be glad you did.
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  I'm not even going to answer that.
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  I'm going to let that sit there for your doctor, OK?
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  And question #5 what should I be watching for?
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  That tells us it's time to adjust my whole plan, not just
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  my meds. Now, this one's the most
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  important and the easiest to miss.
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  There was a time when I thought I had everything figured out.
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  Perfect Med schedule, diet, exercise.
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  I was like the model patient. And then I started feeling
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  garbage. Turns out I wasn't sleeping, I
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  was dehydrated, and my stress was through the roof.
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  My meds weren't failing. My maintenance plan was.
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  Here's the thing most of us don't realize, dopamine isn't
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  just movement, it's mood, motivation, and even digestion.
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  And when those systems get off, everything feels off.
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  So if you're on periods are shorter or you're feeling more
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  anxious or fatigued, don't just ask about the pills, ask what
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  else could be throwing my dopamine balance off.
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  Your doctor might look at a sleep hygiene, hydration, gut
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  health, you know, even cortisone levels.
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  It's like fine tuning a whole orchestra now, not just the
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  violin. And for those of you managing
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  the solo, I see you. You're juggling meds.
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  You're juggling meals, life and probably a dozen alarms.
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  And you're still here and you're still showing up.
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  And that takes grit. So here's your challenge this
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  week. At your next appointment, take
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  one of these questions. Just one and ask it, write it
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  down and say, I heard this on a video, on a path, on a podcast
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  and I really want to understand it better.
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  That's one question. That one question could
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  completely train change your treatment journey.
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  So which one of these five questions are you going to ask
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  at your next appointment? Drop number one to five in the
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  comments. And care partners, what's your
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  best system for managing medication chaos?
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  And here we go, you made it. You did it again.
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  Here is your final braces for the day with Parkinson's.
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  Your doctor has half the picture.
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  You hold another half. The goal is to start coloring it
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  in together because Parkinson's might be unpredictable.
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  But how we manage it doesn't have to be all right.
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  You know the drill. Like the video?
• 14:43
  Share it with somebody you think might need this.
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  Thank you for everything you're doing.
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  And if you're new here and you made it this far, you might as
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  well subscribe. You're already one of the crew,
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  all right? And until next time, keep
• 14:55
  showing up, keep being real, keep laughing, and you keep
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  doing life today. Parkinson's may be part of your
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  life, but it doesn't get to define it.
• 15:08
  Thanks for listening to Living with Parkinson's, The Good, the
• 15:11
  Bad, and the Reality. If this episode moved you,
• 15:15
  helped you, or reminded you you're not alone, share it with
• 15:19
  someone who needs to hear it. Want to go deeper?
• 15:22
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 15:25
  community, and a Direct Line to Bryce.
• 15:28
  You'll find the link in the show notes.
• 15:30
  Until next time, keep showing up and keep doing life today.