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Transcript

My 15-Year Parkinson’s Medication Timeline: What to Expect · Living with Parkinson’s | Bryce Perry

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  When I was diagnosed with Parkinson's, I thought
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  medication would be simple. You take a pill, it helps.
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  And the story, Well, 15 years later and I know it's anything
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  but. This is my 15 year Parkinson
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  medication timeline, the lessons I've learned and how my dosing
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  schedules changed. And at the very end you've been
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  asking for it so I'll share it. My exact updated medication
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  regime today. 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, welcome back to the
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  podcast. If you're new here, I'm Bryce,
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  and this is Living with Parkinson's, The Good, the Bad
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  and the Reality. And a big welcome to all my
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  inner circle and long time subscribers, You know, already
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  know you're the heartbeat of this community.
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  This isn't a channel, this isn't a podcast.
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  This is a community. And I'm so grateful for you.
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  So here on this channel, this community, I share real life,
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  the real life side of Parkinson's, the raw, the funny,
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  the frustrating, and the hacks that actually help.
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  So if that's the kind of support you're looking for, hit the
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  subscribe button. And you know what?
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  You don't have to do Parkinson's alone anymore.
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  OK, let's rewind back to year one of my diagnosis some 15
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  years ago. My first script was 1100 by 25,
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  Levodopa, cordopa pill every four hours.
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  That was it. And I'll be honest, I thought,
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  hey, simple, this will fix me. It's all good.
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  But right away I started learning some really hard
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  lessons and I'm going to share those with you now.
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  So the first lesson, medication changes take time, you see.
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  I expect the results overnight. And when it didn't happen, I got
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  really frustrated. What I didn't know then is that
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  Parkinson's medication is more like tuning a guitar.
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  You can't tune it all at once and expect it to stay perfect
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  forever. It's an ongoing process.
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  You know, I remember once sitting there, I was frustrated
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  out of my mind. I was telling Carmen this pills
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  must be sugar because it's not doing a thing.
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  She laughed and I think she said like, well, at least it's not
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  calories. Well, OK, if you've ever had
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  that same impatience, or is it just me, I hope it's not just
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  me. If you've had that, hit the like
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  button right now so I know I'm not alone here, Please.
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  OK, let's go into lesson #2 because this one lesson two hit
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  me a few years in and here it is.
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  What works in year 1 is not going to work in Year 5.
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  Parkinson's is progressive and your treatment plan has to
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  progress with it. You know, for me it meant adding
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  new meds, changing doses, changing my times, and
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  rethinking how I managed my day. And I want to pause here and ask
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  you something. If you've been diagnosed, what
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  was your very first Parkinson's script?
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  Mine was one pill every four hours.
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  Yours. Or if you're a care partner,
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  what was your loved ones first prescribed?
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  Drop it in the comments below because you know what?
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  I read every single one and I think it would be amazing to see
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  the range of experiences that we've all had in this community.
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  OK, lesson #3 timing is everything.
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  I can't stress this enough. Men's on time every time.
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  It's not just what you take, it's when you take it.
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  I learned that the hard way. If I eat a big protein meal
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  right when I needed my meds to kick in, I was done for the next
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  few hours. So again, look back at my other
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  videos. I tell you I don't plan my my
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  meds around my meals or my meals around my meds.
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  I literally just, if I'm, you know, I'm having high protein,
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  I'll add a half a pill or take half a pill before or after.
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  So it makes sense and it may works for me now.
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  One little slip and the whole day can spiral, though.
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  It really can't. That's how much food, that's how
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  much protein can do. One slip, the whole day's gone.
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  So one time, I'll tell you the story.
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  One time I thought I could just say cheat, right?
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  And I thought I could have all this protein, a big giant steak.
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  I didn't have any extra meds. I was right before a dose and it
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  was early on. And let's just say the steak 1.
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  And I didn't move much for the rest of the night.
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  If that happens and if that resonates with you, take a
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  second and subscribe right now because I share a lot more of
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  these hard earned lessons every week.
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  And that brings me up to lesson #4 side effects are real, but
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  they're manageable. At one point I was thinking, you
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  know, is this medication actually helping me or is it
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  making me worse? You know, I dealt with nausea,
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  sleeplessness, and even some impulse control issues along the
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  way. And you know what, being open
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  with my doctor and not hiding those side effects was a game
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  changer for me. We tweaked, we adjusted and we
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  worked together. You know, I still remember
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  waking up 1 morning after an adjustment and I was telling
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  Carmen, I said I think I just dreamed of like I think I just
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  dreamt that I bought a boat. And she please, she said, please
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  tell me that's not a side effect.
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  Luckily it was just a dream. She was worried.
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  I went out and actually bought a boat.
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  You know, if you've ever had a side effect surprise, let me
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  know in the comments because I think that's something most of
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  us aren't warned about too early enough as well.
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  And I have bought some things. I've bought some things Anyway,
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  those are some of the really big lessons that I picked up along
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  the way. Now let's talk about how
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  medication, my medication journey actually unfolded.
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  OK, the year 1, like I said, start out one levodopa every
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  four hours and those are the 100 by 20 fives, OK.
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  And that kept me going for a while, but within that second
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  year ish, it wasn't cutting anymore.
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  And that's when my doctor added pramaprexole.
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  At first it was just a half a milligram taken with my first 3
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  doses of levodopa. And later on, you know,
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  actually, I think it was like last year, we bumped it up to
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  now to 1 milligram. And that's where I am as of
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  today. And before I share where things
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  are today, let me give you the science in a nutshell, OK?
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  Dopamine doesn't just control movement, right?
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  It also plays a role in how the brain processes pain, timing,
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  even focus. And when your dopamine is low,
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  it's like someone turned up the difficulty dial on everything.
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  Add in stress, poor sleep, or even meals being heavy in
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  protein, and it can crank the dial even higher.
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  And that's why timing, side effect management, and even
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  things like adaptive tools are so important.
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  They're not just tricks, they're a way of lowering the load on a
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  system that's already overworked.
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  And yeah, you know another thing too, though, these, the cost of
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  all these meds, they can add up. And that's something I wish I'd
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  been worried about early on because for many of us, the
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  insurance and affordability are a part of the struggle too.
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  And if you run into that, I get it.
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  And you're not alone. OK, here's the part I teased
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  about in the beginning, my 2025 update.
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  OK, so today my schedule looks like this. 311 dopa cardopa 100
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  by 25 every 2 1/2 every two hours and 45 minutes start.
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  I start the minute I wake up and I keep going every two hours and
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  45 minutes until I go to sleep. OK Pramaprexole I take 1
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  milligram on my first 3 doses of levodopa of the day.
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  So 3 primaprexole, 1 milligram a day on my very first 3 doses.
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  I've also now added in a slow release levodopa cardopa, the
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  200 by 50 pill that night before bed.
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  And I judge that 1 based on where my pills are at.
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  If I've just take my medication or just about take my medication
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  and I'm falling asleep, I take one.
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  I take my 3 levodopa cardopa, my regular regular yellows, right?
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  I call them regular yellows and I throw, I add in one of the
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  slow release. If I'm halfway through my, my,
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  my since my last dose, an hour over an hour into my last dose.
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  Then I take 2 and I go to sleep or I try to sleep anyway.
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  And you know, without that one or two at night, I would wake up
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  stiff and miserable every day. And with it now I can at least
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  get through the night. That's the cocktail that's
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  working for me right now and it's working well.
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  So if you take anything away from this, let it be This
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  Parkinson's medication is not a one and done.
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  It's a moving target and it requires patience, it requires
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  flexibility, and it requires A willingness to keep learning.
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  And if you've made it this far, here is today's Bryce ISM with
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  Parkinson's. The disease is progressive, so
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  your medication and your treatment plan have to progress
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  with it. Now I want to hear from you.
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  What's been the biggest surprise in your medication journey?
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  Was it your first script, a side effect you didn't expect, or how
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  much timing really matters? Dro it in the comments right
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  now. Your story could help somebody
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  else figure out their next step. And if you want to go deeper, if
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  you really want to actually troubleshoot this stuff with
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  people who live it every day, check out the inner circle.
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  You know what we meet live every month and we keep the
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  conversation going daily. And it's become one of the best
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  parts of my Parkinson's journey. And the link is in the
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  description below. And remember, it's a private
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  community, so we can talk meds in there.
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  So if you want to come, come on in, come join the community.
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  It's, it's that simple. Links in the description below.
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  And that's my 15 year Parkinson's medication timeline
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  from one pill every 4 hours to adding a Primaprixole to today's
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  updated schedule of those 3 pills every two hours and 45
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  minutes plus that night time slow release.
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  And it's been a trial and error. It's been frustrating, but it's
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  also given me hope and control back.
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  And if you're in a spot in your life right now where you don't
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  know if your medication is really working, if your
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  medication is not making it all the way to your next dose, if
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  you're feeling off more than you're feeling on, if you're not
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  feeling well with them, then I'm going to tell you right now, you
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  do not have to live that way. Phone your doctor, call your
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  doctor right now and get in and see them and tell them exactly
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  what's going on and tell them you want to either increase or
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  decrease or change your timing or whatever it might be.
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  Take take control of your healthcare journey.
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  Take control of your health today.
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  We can. OK, You're in control of you.
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  That's the bottom line. Until next time, I really hope
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  you enjoyed this. If you did, please subscribe.
• 10:47
  Please like this video and you know what, please share it.
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  I know these these podcasts are being shared in in support
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  groups all around the world right now.
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  And so if you know a support group that might need to help or
• 10:58
  if you know somebody that might need to hear this, share it with
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  them. And I really appreciate you.
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  I love you. Until next time, keep showing
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  up, keep being real, and you keep doing life today.
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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
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  with Parkinson's, the good, the bad, and the reality.
• 11:22
  If this episode moved you, helped you, or reminded you
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  you're not alone. Share it with someone who needs
• 11:28
  to hear it. Want to go deeper?
• 11:30
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
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  community, and a Direct Line to Bryce.
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  You'll find the link in the show notes.
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  Until next time, keep showing up and keep doing life today.