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Transcript

Parkinson’s Sleep: Why You Keep Waking Up at 3AM (And What Helps) · Living with Parkinson’s | Bryce Perry

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  You ever had one of those nights where you're lying there, it's
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  pitch black, it's dead quiet, and your brain suddenly decides
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  now is the perfect time to talk about everything that's ever
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  gone wrong in your entire life? Yeah, well, that's me.
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  And it's pretty much every night around 3:00 AM, You know, your
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  body's begging for sleep, but your brains like, hey, remember
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  that awkward thing you said three years ago?
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  Let's replay that in high def. Well, welcome to the 3:00 AM
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  club. And trust me, it's not the kind
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  of club with music and dancing. It's more like your brain runs
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  the place, the lights never go out, and the only thing on the
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  menu is overthinking with a sign of regret.
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  Now, if that sounds familiar, stay with me because we're about
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  to laugh about it. We're about to learn why it
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  happens. And I promise by the end, you'll
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  see that you're not the only one who's wide awake at that time.
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  Welcome to Living with Parkinson's, The Good, the Bad,
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  and the Reality. Real talk, real life, real
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  community with Bryce Perry. Let's begin.
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  Hey, it's Bryce, thanks for being here.
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  This is living with Parkinson's, the good, the bad and the
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  reality. It's where we talk about
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  everything from symptoms to Silver Linings, with plenty of
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  humor in between. And if you like real talk and
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  honest stories and a few laughs about life with Parkinson's and
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  hit that subscribe button right now.
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  That way you'll never miss another episode.
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  OK, today's topic, the 3:00 AM club.
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  That's special time when Parkinson's stress and
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  imagination team up to make sure that you'll never, ever need an
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  alarm clock again. And you know the feeling when
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  your brains digging through old thoughts at 3:00 AM like a like
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  a raccoon in a garbage can? Yeah, that pretty much.
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  That's pretty much me. Most nice and just just a little
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  less fur and a lot more frustration.
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  So let's talk about why it happens and what might actually
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  be going on in our brains and what helps me keep my sanity
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  when it does. OK, now picture this.
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  I'm finally asleep. I may be dreaming about fishing
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  or baking or maybe Carmen. You know that my eyes are wide
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  open 3:00 in the morning. No sound, no reason, just ping
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  my brains awake. And right on cue, the announcer
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  in my head goes. Good evening ladies and
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  gentlemen, and welcome to another episode of Overthinking
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  Live. You know tonight's guest.
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  Did you take your meds? Right?
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  And why does your left knee hurt now when it didn't hurt
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  yesterday? Followed by our musical guests,
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  Restless Leg Rhythm and the Cramps.
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  And stay tuned for tomorrow night's rerun.
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  Did you say something weird to your doctor last visit?
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  You know, I swear my brain has better programming than Netflix.
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  And, you know, no commercials. I guess Netflix doesn't have
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  commercials either. Anyway, now we can laugh about
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  it. But here's the things.
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  Here's where things get interesting.
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  It turns out there's a real reason that this keeps
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  happening. And, you know, once I understood
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  it, it made those nights a lot less scary.
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  Now, here's what I want you to think of it.
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  Think of your brain like a nightclub.
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  During the day. It's bright, loud, people
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  everywhere, thoughts, movement, emotion.
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  Everything's bumping along. At night, dopamine is supposed
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  to step in, like the DJ who slowly fades the light, slows
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  the beat and shuts down the place just so you can drift off.
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  But with Parkinson's, that DJ is unreliable.
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  You know, some nights he leaves early and he keeps the beat
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  pounding, right? It just pounds and pounds.
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  And other nights he shows up late, hits the wrong button, and
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  he loops the same song until sunrise.
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  And when the rhythm gets messed up, the whole club, meaning your
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  brain stays lit up And in late medication, you know, adding
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  some late medication, a little stress or caffeine, and suddenly
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  it's 3:00 AM and you're the only one in the club left dancing.
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  You know, knowing that sort of changed everything for me
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  because you can't argue with chemistry, but you can learn to
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  work with it. For me, the first step was to
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  stop fighting it. I used to get angry.
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  I'd roll around. I'd check the clock.
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  I'd count the hours of sleep that I was losing.
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  You know, now when I wake up, I just accept it.
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  I stretch, I take a sip of water, and I tell myself, all
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  right, 3:00 AM. You win tonight.
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  You know, that tiny bit of acceptance takes the pressure
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  off of it. And weirdly enough, half the
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  time I fall back asleep before I even realize it.
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  You know, a lot of us, and you probably have done this before
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  you're going to you start worrying like, Oh my gosh, if I
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  don't sleep tonight, I'm going to be so tired tomorrow, right?
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  And that just starts that cycle again.
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  Oh, how am I going to do this? And how am I going to do that?
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  And how is it, you know, without any sleep?
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  Once you get in that vicious cycle, you're never going
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  anywhere. Trust me.
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  You know, And those are the nights that I call like my brain
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  just won't stop talking to me back.
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  And on those nights, I accept it, You know what?
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  I'll reach over, I'll grab my phone, maybe not to scroll, but
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  to talk, to talk into it. I hit record, and I just spill
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  whatever is bouncing around in my head.
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  Call the pharmacy, You know, film tomorrow's episode.
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  Why is cold pizza better than hot pizza?
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  Like, just random, But that's what's in my head at 3:00 AM.
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  Sometimes it's deep, sometimes it's ridiculous, but it gets the
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  thoughts out so my brain stops juggling them by morning.
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  Most of us, most of it makes no sense, but it works.
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  It's actually makes for some really crazy morning coffee
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  discussions with your partner or with yourself to say, this is
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  what I was thinking about last night, right.
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  It's like cleaning the browser, clearing the browser tabs in
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  your head. Just get it out, write it down.
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  If you're not talking the phone person, write it down.
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  But just say them out loud, write them down, speak them out
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  loud. It'll make them go away.
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  And hey, I'd love to hear what works for you.
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  If you got any tips or any tricks or any nighttime hacks
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  that would help, that helps calm your brain, then drop them in
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  the comments because I'm always looking for new ideas and
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  everybody, trust me, people read the comments and it might, you
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  never know who you might help. OK, this brings us up to
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  Carmen's care partner Corner. Now I asked her what those
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  nights are like from her side of the bed, and she gave me
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  something really good to share with all the care partners out
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  there. Here's what she'd say.
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  When Bryce wakes up, I can tell immediately the cover shift,
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  then that long sigh. You know the one.
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  But you know, at first I'd lie there hoping he'd settle, but
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  eventually I realized I can't control his Parkinson's, but I
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  can control my response. So my care partner tip is this.
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  Build a little empathy routine. When your partner wakes, check
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  in softly. Are you OK?
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  Sometimes I hand him his phone so he can record what's on his
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  mind, and sometimes I just breathe slow so he matches my
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  breath. We.
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  And we laugh because if we don't, we'll both cry from the
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  exhaustion. And what I wish someone had told
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  me early on is that the 3:00 AM club isn't just for people with
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  Parkinson's. It's for us, too.
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  We're awake, we're thinking, and sometimes we just need to know
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  that someone else gets it. She's right, you know.
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  And for the record, she's officially the VP of Night
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  Operations around this house. And if you're watching this and
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  you're part of the 3:00 AM club too, let me know in the
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  comments. Just write hashtag 3:00 AM club
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  so we know that you're part of the night crew and you've been
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  there and been there and done it.
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  You'd be amazed at how many of us are awake at the same time
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  doing the exact same thing. And isn't that exciting?
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  Isn't that interesting? We sometimes lie there thinking,
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  why me? Why am I lying here?
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  Everybody, the world's asleep and I'm staring at my ceiling
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  fan. Could you imagine?
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  When you start thinking about it all millions of people with
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  Parkinson's around the world are all up staring at the ceiling
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  fan. You know, crazy.
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  And you know what? For Carmen and I, humor helps us
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  more than melatonin ever could. Because when you can laugh about
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  it, it loses its power. And when it loses its power, you
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  get a little bit of peace back. And here's one more thing that
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  helps me. Deliberate breathing, right?
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  Talked about in a couple episodes ago.
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  You know, inhale for four, exhale for six.
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  Picture each breath dimming, one more light in the mental
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  nightclub until it finally closes.
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  And instead of saying, I can't sleep, I do this.
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  Tell yourself I'm resting. It's a tiny mindset shift, but
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  it changes the entire experience.
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  Your body listens, your jaw relaxes, your shoulders drop.
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  And sometimes, if you're lucky, you'll just drift off without
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  even realizing it. And really, if you don't, that's
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  OK too. You're still giving your body
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  what it needs. Calm, not chaos.
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  And that's progress. OK, before we wrap up, let me
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  say this. If you ever find yourself awake
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  again, whether it's tonight or another night at 3:00 AM, no,
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  you're not alone. You know, we even started a
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  three M3M channel group inside three M group inside the inner
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  circle. And it's a place for all those
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  late night thoughts and the I Can't Sleep moments.
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  People, you know, they can share stories, they can share jokes,
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  survival tips, and you know what?
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  There's always someone awake. It's comforting and honestly a
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  little terrifying to know that you're never the only one
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  staring at the ceiling. The links in the description
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  below if you want to join us. Pajamas are welcome.
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  Free trials on no harm, no harm, no fowl.
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  Come on in, check it out. All right, time for the Brycism
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  of the episode. And if you're ready, I think
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  it's a good one. So get ready, Here it is.
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  Parkinson's and sleep have trust issues.
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  Some nights. I make it work for a while, and
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  then, right when I start to believe in us again, sleep
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  ghosts me. Now, if that sounds familiar,
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  you're in good company. So the next time you're lying
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  there at 3:00 AM, remember this. You're not alone.
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  And it's OK to laugh about it. Because even when Parkinson's
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  won't let you rest, you can still rest in the fact that
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  we're all in this together. Now, if this episode gave you a
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  laugh or helped you in any way or helped you breathe, maybe hit
• 10:21
  subscribe. Trust me, you don't want to miss
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  what's coming up. And if you want to hang out with
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  the rest of us night owls, come join the three M club inside the
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  inner circle. The link is in the description
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  below. Free trials on.
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  And until next time, keep showing up.
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  You keep laughing and above all else, you keep doing life today.
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  We'll see you next time. Parkinson's may be part of your
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  life, but it doesn't get to define it.
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  Thanks for listening to Living with Parkinson's, the good, the
• 10:50
  bad, and the reality. If this episode moved you and
• 10:54
  helped you or reminded you you're not alone.
• 10:57
  Share it with someone who needs to hear it.
• 10:59
  Want to go deeper? The Inner Circle is waiting.
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  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 11:06
  Bryce. You'll find the link in the show
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  notes. Until next time, keep showing up
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  and keep doing life today.