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What My Parkinson's Morning Routine Reveals About Hope · Living with Parkinson’s | Bryce Perry

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  They told him he had five good years left.
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  That was 15 years ago. He's still standing, still
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  speaking, still living. This is living with Parkinson's,
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  The good, the bad, and the reality.
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  A podcast about what happens when life throws you something
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  incurable and you fight back anyway.
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  Hosted by Bryce Perry, diagnosed at 4015.
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  Years into the battle, This is the truth behind the tremor.
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  Let's begin. Ever wonder what a real day
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  looks like when you're living with Parkinson's?
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  And I mean not the polished version, not the list of
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  symptoms in a brochure. I'm talking about the actual
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  messy, sometimes beautiful routine of living life with this
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  thing. Well, today I'm going to pull
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  back the curtain. I'm going to share my real daily
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  routine, the good, the bad, and the reality.
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  Well, welcome to the podcast. I want to thank my loyal
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  listeners and viewers for coming back.
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  And if you're new here, I'm Bryce and this is living with
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  Parkinson's, the good, the bad, and the reality.
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  This channel, this podcast is all about providing strength,
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  hope, and support to individuals living with Parkinson's,
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  Parkinson's and their caregivers.
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  I share motivational stories and tips and insights to help you
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  navigate life with Parkinson's. So if you're looking for that
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  kind of support, hit the subscribe and you went along
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  here. So today's program is my daily
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  routine, right? My daily routine.
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  And I just want to get right into it this morning because
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  this is in such an important topic.
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  And let's be honest, mornings used to be the hardest part of
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  my day. There was a time early on when
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  I'd lie there in bed thinking, do I really have to get up and
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  do this all over again? I'd reach my pills on the night
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  stand and hoping to remember that I refilled them and hoping
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  to remember that I left the the lid not so tight and hoping I
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  remembered that I had water beside me.
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  You know, some mornings I forget are worse.
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  I'd knock over the bottle and I'd have to chase pills all
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  across the floor. Anybody been there?
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  That is the reality of it. Well, now I've created a system
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  that works and I call it the ready for this.
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  The wake take and wait. The wake take and wake number
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  one. I wake up #2 I take my first
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  dose and then I wait 20 minutes before even trying to get out of
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  bed, and that's 20 minutes. That's sacred time.
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  No checking my phone, no rushing, just breathing.
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  Sometimes I just lay there and think about my day, and
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  sometimes I stare at the ceiling and I just let my body reboot.
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  Now, why is that different? The thing is this is that you
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  have to have, you have to have movement before momentum.
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  What does that mean? Well, once I'm up, it's movement
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  first before coffee, before breakfast, before anything.
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  I do a very short stretching routine.
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  Now, I'm not talking about an Instagram yoga here.
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  I mean slow, purposeful, purposeful movement to tell my
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  brain, Hey, we're going to do this today.
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  Now, of course, this is after that 20 minutes when I just kind
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  of meditate and, and I and I think about things and, and
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  again, thinking about positive things, thinking about good
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  things I'm going to do today. Anyway, there's one stretch, I
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  call it the coat hanger. Coat hanger.
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  It's where I raise my, my arms like I'm trying to hang an
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  invisible coat on my shoulders. It's awkward, it's hilarious,
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  but it works for me. And here's a tip, don't skip the
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  small stuff. Brushing your teeth, washing
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  your face, even if it takes longer, these things signal your
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  brain and your body that this day is starting.
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  That's an easier way to kind of get your body and your brain to
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  go, OK, man, we're into this. It's a day.
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  Here we go. See routine.
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  I always thought routine was constrictive, but now I find
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  that routine is freedom. Even when your body doesn't want
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  to cooperate, it's complete freedom.
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  And then let's talk about breakfast.
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  I don't eat right away. I give my meds about 30 to 45
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  minutes Head start, right? Some days I have eggs, some days
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  toast. And but I always, always, always
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  before any of that. Water first.
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  Water first. It helps the meds kick in better
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  and faster. So funny story, funny story.
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  Early on, I didn't know that protein could interfere with
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  your medication absorption, right?
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  So I'd slam a protein shake and I'd wonder why I felt like I was
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  freezing up. And now, now I know better.
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  Right now, I plan my protein around my bed.
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  It's not the other way around. Like little things that make a
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  massive difference, just little tricks and tips.
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  And, you know, when something's not working, that's that signal
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  to say maybe I should try something different.
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  And yeah, you know, if you've listened to the podcast or
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  watched the podcast for for some time now, and if you haven't,
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  what's the matter? Get get back in the playlist and
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  start from the beginning to catch up to where I am.
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  Because the one thing that I do, the one thing I advocate for and
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  one thing I'm going to push you to do is to try different
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  things. Don't put up with the standard
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  like it's not working. Oh well, no, if something's not
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  working, try something different.
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  So I'm going to encourage you today to do that.
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  And you know, if you're you're here and if you're watching this
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  on YouTube or wherever you are, say hi in the comments.
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  I'd love you to say hi. And if so far so good, I'd love
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  you to like this comment or like this this episode and and share
• 5:21
  it with somebody who you might need it.
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  You know, the more you like, the more you comment, the more you
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  engage with the episode. All these algorithms, wherever,
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  wherever you're listening or watching this on they go, huh?
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  People are engaging. It must be OK.
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  And then they put it out to more people that specifically are
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  looking for this type of programming.
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  So if we want to reach the masses and help other people, if
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  you wouldn't give us a like or share or a quick comment, say
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  hi. I'd love it.
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  OK, now, now we move into the midday.
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  So midday management, right? So midday is all about energy
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  pacing. For me.
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  This isn't a Sprint. It's like carefully balancing
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  the and it's a careful balancing act between movement and rest.
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  So I used to try to cram all my, what would you call like
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  productive hours into one big push and then I'd crash.
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  Now I build in rest periods. Yeah, I actually build in rest
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  periods. About 15 minutes, you know, on
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  the couch or just sitting, meditating or listening to music
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  even. Just like, just like silently
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  sitting here. But I don't, I do it without a
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  screen, right? So I'm not just taking 15
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  minutes on my phone or taking 15 minutes to scroll around or, or
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  whatever. I mean literally 15 minutes
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  where I can either. I literally kind of what I
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  literally do is there's like a couch back here.
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  I would literally just kind of like put some my Airpods on and
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  I'll listen to some music and I'll just lay there for 15
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  minutes. I'll just like zone out, excuse
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  me. And, and, and those, those 15
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  mirror those 15 minutes, right? It's not about laziness.
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  This is an actual strategy, you know, my work day, my crane of
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  time, it all lives in blocks, right?
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  My my medication on a three hour blocks, right.
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  So I need to reboot that time. I need to take advantage of it.
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  And you know, sometimes and I was going to think about this
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  and I was going to say sometimes I take a nap.
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  I mean, I try and just I'm not a napper and I'm so tired, you
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  know, based on lack of sleep. But even those 50 minutes of
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  just shutting it down, closing my eyes for a minute, just
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  meditating, listening to music, read a book, whatever it is that
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  you find. Maybe you like to walk, go for a
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  walk, but just no, actually, what am I saying?
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  You need to rest. You need to schedule that other
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  stuff in alter. And here's the thing.
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  There's no guilt in this, right? This is smart.
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  Build in that 15 minutes stop time and rest time so that you
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  don't have the crash time and waste a whole bunch more time,
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  right? And here's the other thing too,
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  is, and here we go again, exercise.
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  I know, I know, I know, I know everyone says it, but here's the
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  truth. I don't always feel like
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  exercising. There's days I literally have to
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  bargain with myself, like OK Bryce, just do 5 minutes and
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  then you can quit. But sometimes, you know, what
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  happens is, you know, I, I bargain, I bargain at 5 minutes
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  and then I almost like always just keep going.
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  It's always over 5 minutes. So whether it's just going for a
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  walk, whether it's, you know, boxing and you know, doing a
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  little workout, whether it's doing some yoga, whatever it
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  might be, or even you know what, literally just standing up and
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  stretching and marching in place.
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  Sometimes motion is medicine. It helps with the stiffness,
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  mood, energy and sleep. You name it, it does a lot.
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  So this is crazy. I can't even believe I'm
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  admitting this, but one of my favorite hacks is like dancing
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  now. No audience, thank God, right?
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  No judgement, just me, the music and a body that still wants to
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  fight for its rhythm. It's just something like that
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  thing where you just want to let loose and let go and and just
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  take that 50 minutes and just kind of move.
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  And it's really empowering. And I'm telling you, it'll make
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  Yeah, make your time. So.
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  So what did I just say? I live my life in times block
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  times, right? So I take my meds every three
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  hours. So I live in a three hour block.
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  Well, that means that I'm scheduling 15 minutes of rest
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  and 1515 minutes of rest an hour or sorry in that block and 15
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  minutes of exercise. So just put it in and I schedule
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  it. I mean, it's crazy, but I do, I
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  journal it and schedule it and then we move on to the evening.
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  So the evenings are a totally different beast, right?
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  That's when fatigue usually hits me the hardest.
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  And I'm sure most people, you know, one of the, there's some
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  different little tricks you can do, like dim the lights early,
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  right? Take my last or not my last
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  level, but take that, that, that dose around dinnertime, right?
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  Have dinner and then I typically and, and purposely start slowing
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  my brain down, OK, not just my body.
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  So right after dinner, that's when my brain I'm just starting
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  to slow it down. And that means like no heavy
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  decision making after 8:00 PM. That's a tough one for me
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  because you know, that's when you know, it may be time and
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  time to catch up with my spouse or having time to, you know,
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  whatever. And I got to be, I got to know
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  this, that that's not the time for me to make decisions
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  mornings, you know, that mid morning time is my decision
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  making time. So no heavy decisions after 8
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  for me, right? I'll journal, I'll listen to
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  that calming music again. Sometimes I'll even just sit in
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  silence with my wife. Like we'll literally kind of
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  just prop the bed, one of those beds that move up and and so we
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  kind of like prop the bed up and just we just chill, we hang out,
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  you know, trying to take my face off the screen, not scrolling.
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  It's sacred time. And then as I'm getting ready
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  for bed and, and again, I've told you this before, one of my
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  personal favorites and me and my wife, kudos on this again, but
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  it's that magnesium spray, that magnesium spray link in the
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  description if you want try it. But it's funny, it's a few
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  people have commented it on other videos where they've tried
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  it and they're like, it's working, right?
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  It's working for me. It helps me sleep.
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  And you know what, it could be a placebo, it could be just
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  totally in my mind, but I don't care.
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  It's real to me. And either way it works.
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  It completely works for me. So that's that evening strategy
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  evening is that calm down time. It's coming down, coming down,
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  coming down because again, that leads to night time.
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  So last thing, night time meds, right?
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  I am now taking a controlled release levodopa before bed.
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  You know, it doesn't stop all my symptoms through the night, but
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  it smooths them out. It seems to smooth them out had
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  enough to sleep. So I would suggest that if
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  you're is having issues and sleep, especially with like, you
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  know, restless leg syndrome where you're moving around or
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  things are happening and if you wake up in the morning, like I
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  do like you feel like you're, you know, 200 years old and it's
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  crazy to get going. I'm trying it.
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  I just started not that long ago, maybe three months ago and
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  so far so good. So maybe talk to your doctor.
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  I'd encourage you to talk to your doctor and maybe that's an
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  option that might work for you. Now, a couple of things.
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  I keep water by my bed, right? And I set reminders right?
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  And I even I even have that. I've heard that's not me, but
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  I've heard some people even have glow in the dark pill caps.
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  You know, I used to wake up panicking, thinking that I
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  forgot something. And now I just trust that
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  routine and I sleep better because of it.
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  So literally I'd be going to bed and I'd be worrying about, OK,
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  did you know I got to make sure that my caps off, my water's
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  ready. This this is ready.
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  That's ready. Everything's ready and I'd
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  stress and worry so much about everything being ready for the
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  morning that I'd have trouble sleeping.
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  And so I've learned to trust myself, right?
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  Learned to just do this routine. And luckily for me, and I'm
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  hoping you are in the same boat, but I have a pretty amazing care
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  partner with me who takes care of a lot of that stuff for me
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  and making sure that everything's laid out.
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  But it's something even when I travel and I'm on my own, I got
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  to make sure in my hotel room that I have the water ready with
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  a maybe a water bottle with a cap half loose because I can't
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  really open it in the morning. I have to, you know, make sure
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  my pills are laid out for me so I don't have to go struggling
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  with pill bottles. And, and I know there's other
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  hacks for that in opening things, but for me, it's my
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  motor skills are so infinite are so fine in infinite.
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  Is that the right word? They're so fine in the morning
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  that I literally have to be able to slide my pills into my palm
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  on my head because I can't pick them.
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  I can't pick them up. So anyway, that's my day.
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  That's how it works. It's not perfect and it's not
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  always pretty, but it's mine. And I've learned that owning
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  your routine, no matter how simple or strange it can be, can
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  make this journey a little less overwhelming.
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  And what about you? What's something that's helped
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  you and your routine? You know, dropping the comments.
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  I read every comment and I respond to everyone.
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  And if you want to go deeper and I'm just going to, I know I
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  don't want to make it sound like I'm just trying to sell things
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  all the time because this is, I just believe in this so much.
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  And that's why I want to offer it to you.
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  And it's, if you want to go deeper with me, right?
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  And others who really get it, consider joining the inner
• 13:44
  circle, right? It's going to do live zoom
• 13:46
  calls. We share tips, tricks, tips and
• 13:48
  tricks and, and we support each other.
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  It's, there's no judgement and there's no, you know,
• 13:53
  expectation. It's just if you want to go a
• 13:56
  little bit deeper, if you want to live life and sort of do
• 13:58
  life, you want to do it with me, join my inner circle.
• 14:01
  There's a link in the, I think in the first comment and also in
• 14:04
  the description. But I want to thank you.
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  Thank you for watching, Thank you for showing up and thank you
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  for doing life with me today. You have a great day.
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  Parkinson's may be part of your life, but it doesn't get to
• 14:23
  define it. Thanks for listening to Living
• 14:26
  with Parkinson's, the good, the bad, and the reality.
• 14:30
  If this episode moved you, helped you, or reminded you
• 14:33
  you're not alone. Share it with someone who needs
• 14:36
  to hear it. Want to go deeper?
• 14:38
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 14:42
  community, and a Direct Line to Bryce.
• 14:44
  You'll find the link in the show notes.
• 14:46
  Until next time, keep showing up and keep doing life today.