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Transcript

Parkinson’s Morning Routine: What Changed Everything (And What Was Making It Worse) · Living with Parkinson’s | Bryce Perry

• 0:01
  My mornings start out like a weird dream sequence out of a
• 0:04
  cowboy movie. I'm lying there, frozen, telling
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  Carmen to saddle the horses because in my head we're
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  escaping. In reality, I'm stuck in a bed
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  waiting for my first Parkinson's pill to kick in.
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  And sometimes it's not a cowboy dream.
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  Sometimes it's darker. I think Carmen's a nurse trying
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  to poison me with medication. And I'll and I'll tell her in a
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  slurred, half asleep whisper that they're trying to get us,
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  don't let them. And she'll just calmly say sure
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  thing, partner, Now let's go make some coffee.
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  And that's how my day starts. Not with energy or motivation.
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  With confusion, stiffness and a voice that sounds like I just
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  stumbled out of a bar at 10 AM. My toes are curled, my hands are
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  clenched, and I'm And for about 30 minutes I can barely move.
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  But here's the twist. That half hour I used to hate?
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  It's now the most important part of my day.
• 1:00
  Welcome to Living with Parkinson's, The Good, the Bad,
• 1:04
  and the Reality. Real talk, real life, real
• 1:08
  community with Bryce Perry. Let's begin.
• 1:13
  Hey everyone, I'm Bryce and welcome back to Living with
• 1:16
  Parkinson's, The good, the bad and the Reality.
• 1:18
  And I'm so glad you're here. And if you're new, welcome.
• 1:21
  Seriously, you're part of something growing fast.
• 1:24
  It's just the last. In just over the last month,
• 1:27
  over 1700 new people have joined the community.
• 1:30
  And it just blows me away. It tells me that we're doing
• 1:32
  something that matters. And what is that?
• 1:35
  What are we doing that matters? We're talking.
• 1:36
  We're talking about real life, not the polished brochure
• 1:39
  version of Parkinson's. So thank you for showing up.
• 1:42
  And if you haven't yet, hit that subscribe button so you don't
• 1:44
  miss what's coming next. Because this space isn't just
• 1:47
  about Parkinson's. It's about living with it and
• 1:50
  still finding moments of joy, laughter and purpose.
• 1:54
  OK, let's talk mornings. If you live with Parkinson's,
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  you already know that mornings can be brutal.
• 2:04
  Your body feels like it's made of concrete, your voice doesn't
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  sound like you, and your brains wide awake while your muscles
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  are still on strike. For years, I hated mornings.
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  I wake up stiff, frustrated, and angry at myself.
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  At myself before the day even started.
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  I stare at the ceiling thinking this is how it's going to be
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  forever. And honestly, that mindset made
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  everything worse. Then one morning, I realized
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  something. What if I stop fighting those 30
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  minutes? What if, instead of hating them,
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  I use them? Because I can't control when my
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  pills start working, but I can control what I do while I wait.
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  And here's how my mornings look now.
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  I keep my pills, my water, right beside my bed.
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  The moment my alarm goes off. Normally, Carmen gives me my
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  pills. If she's not there, I take them,
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  and I take that first dose. And then nothing happens.
• 3:00
  Not right away. You know that it takes time.
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  So instead of lying there frustrated, I start small.
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  I wiggle my toes. I roll my ankles.
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  I move my fingers. It's not exercise.
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  It's more like letting my body know, hey, we're still in the
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  game here. Then I do some gratitude
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  practice and listen. Some days it's deep.
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  I'm grateful for another day with Cartman.
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  Other days it's grateful for coffee.
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  Whatever works, it gets my brain focused on something positive
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  instead of spiraling into stress before I even get out of bed.
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  And Speaking of coffee, that's the Holy Grail of my morning.
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  As soon as I can move enough to get up, I head for it.
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  Right for it. But there's something that's
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  changed how I approached the whole start of my day.
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  I actually plan it. I used to just wing it right.
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  I used to take my meds at random times, eat whenever and wonder
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  why some mornings were good and others were disasters.
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  Once I started tracking my meds and my routines, everything
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  changed and I could see when my off periods hit and I could
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  adjust. Now, if you haven't done that
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  yet, try it. Write down when you take your
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  meds, when you eat, and how you feel.
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  It's simple, but it gives you control.
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  In fact, we're just about to release a new Parkinson's
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  medication tracker and it's going to make it easy.
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  You can log your meds, you know, note your on and off periods and
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  print it off to show your doctor.
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  It's totally going to be free. You'll find the link in the
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  description soon, hopefully maybe even today.
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  But it's the exact tool I wish that I had years ago.
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  Now I want to talk to you about something else.
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  What happens in those frozen 30 minutes?
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  Because I bet I'm not the only one.
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  That strange dream state when your body's stuck and your
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  brains running lapse. You know, 1 morning I was
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  convinced I was hosting a dinner party for my old Co workers in
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  bed. I kept asking Carmen where the
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  advertisers were. She said right here, chef.
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  And she handed me the pills and I said, those are not on the
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  menu. And that's the kind of stuff
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  that Parkinson's throws at you. And when and and we can either
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  get mad about it or we can laugh about it.
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  It's your choice. It's our choice.
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  But here's your first take away for the day.
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  Humor helps more than you think. You can't always move your body
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  first thing, but you can shift your mindset.
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  If you can laugh even for a second, you take back some of
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  the power that this disease tries to steal.
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  And with that, that leads me right into Carmen's corner or
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  Carmen's care partner corner, Sorry.
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  And she said this to her. You did this for you today.
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  Hi everyone, It's Carmen. Mornings in our house are never
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  boring. Sometimes, Bryce.
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  Sometimes Bryce wakes up in a cowboy mode, and sometimes he's
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  convinced I'm plotting against him.
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  And other days he just lies there, stiff as a board, trying
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  to pretend he's meditating. Well, really, he's only just
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  waiting for me to go get the coffee.
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  How'd she know that? Here's what I've learned.
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  Patience is everything. I used to try to rush him,
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  thinking if I got him moving faster, he'd feel better faster.
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  But that's not how it works. Now I take those 30 minutes as
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  my time to. I breathe, I plan, I take care
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  of myself because you can't pour from an empty cup, as I always
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  say. So if you're a care partner
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  watching this, remember, your job isn't to fix it or to fix
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  them. It's the support.
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  And that includes taking care of you.
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  Well, thank you, Carmen. And you know what?
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  She's right. Mornings are tough for both of
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  us because you know, they're tough, but we're also that's
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  also taught us teamwork. You know, if you're living with
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  Parkinson's, drop still waking up, still waking up in the
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  comments. And if you're care, partner, why
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  don't you drop this team caffeine?
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  Because let's be honest, some days coffee is the glue holding
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  this relationship together. Now let's talk about how you can
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  reclaim your mornings. OK, so take take take some note
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  of this. OK, so here's tip number one.
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  Stop fighting the slowness. The more you fight it, the worse
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  it always gets. Give yourself permission to warm
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  up. You're not lazy.
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  You're letting your body recalibrate.
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  OK, it's not lazy. You just have to recalibrate.
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  All right, here's tip #2. Prep the night before.
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  Set out your meds, set out your water, set your clothes, your
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  coffee mug, everything. Parkinson's already gives you
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  enough surprises. Future you will think past you.
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  And here's tip #3 sunlight. As soon as you can move, open
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  the blinds or step outside. Natural light helps reset your,
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  your, your, your rhythm and boost dopamine.
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  And let's face it, we could all use a dopamine bump.
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  And if you not sunny out, you live in a dark place like I'm
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  about to go into in the middle of Canada as we move in towards
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  the winter months and it's dark here like all the time.
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  I got myself 1 of this alarm clock light.
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  It's like light comes on, it slowly comes on like a like a
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  sun rising and it lights up the side of my face.
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  And I'll tell you what it is really cool.
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  I wake up feeling better. I wake up feeling more refreshed
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  with it. It's really neat.
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  I'll put a link in the description flow if you want to
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  take a look at it. They're not expensive, but
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  they're they're really cool. OK tip #4 hydrate early.
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  I know coffee feels urgent, but water comes first.
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  Dehydration makes stiffness worse, so start your day with a
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  glass of water before your first cup of coffee.
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  Did you know that I, you know I have, I, I say this like I'm so
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  confident, but you know, I got to try better at that one.
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  And tip #5 find one small win. You know, some mornings my win
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  is getting my socks on without wrestling, without a wrestling
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  match, and other days it's being ready for a meeting by 9:00 AM.
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  It doesn't matter how small it is that that one win sets the
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  tone for the rest of your day. Because here's the truth.
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  Parkinson's might decide how your day starts, but you get to
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  decide how it goes. Now, I want you to think about,
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  I want you to think about this. What's one thing that you can do
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  tomorrow morning that would make your day a little bit easier?
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  It could be prepping your pills. It could be stretching before
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  you get out of bed, could be setting an alarm or having some
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  gratitude time. Tell me in the comments what
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  your morning win will be, and then let's see how it goes.
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  OK. And while you're down there, why
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  don't you subscribe? Because when you do, you're
• 9:30
  joining a movement of people who are done just coping.
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  We're learning to live all over again.
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  And if you want more tools like the Med tracker, that's coming
• 9:40
  up here, a boot camp for Parkinson's, for newly diagnosed
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  folks, the links are in the description.
• 9:45
  And if you want to go deeper, join the inner circle.
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  It's our community where we share, we laugh, we vent, and we
• 9:51
  keep each other going. It's awesome.
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  And with that, you've unlocked today's racism.
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  Here it is with Parkinson's. You can't always control how
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  your day begins, but you can control the story you tell about
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  it. I like that.
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  So until next time, I'll tell you what.
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  I want you to keep waking up. I want you to keep laughing and
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  I want you to keep doing life today.