Latest / Living with Parkinson’s | Bryce Perry / Why Am I So Exhausted with Parkinson’s?

Transcript

Why Am I So Exhausted with Parkinson’s? · Living with Parkinson’s | Bryce Perry

• 0:01
  There's tired and then there's Parkinson's tired.
• 0:06
  And if you know the difference, you know, you know.
• 0:09
  One time I sat down to tie my shoes and I woke up 45 minutes
• 0:12
  later with one shoe on and a spoon in my hand.
• 0:15
  So if you've been asking yourself, why am I so exhausted
• 0:18
  with Parkinson's, you're not crazy, you're not lazy.
• 0:22
  You're just fighting a battle that no one else can see and
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  stick around to the end because the only are we going to break
• 0:28
  down why this happens? I've also got a tip that's
• 0:31
  helped me the most plus of racism that you'll want to hear.
• 0:36
  Welcome to Living with Parkinson's, The Good, the Bad,
• 0:39
  and the Reality. Real talk, real life, real
• 0:43
  community with Bryce Perry. Let's begin.
• 0:49
  Hey friends, welcome back to the channel.
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  If this is your first time here, I'm Bryce and I've been living
• 0:53
  with Parkinson's now for over 15 years.
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  This channel is all about the good, the bad, and the reality
• 0:58
  of Parkinson's and fatigue. Oh yeah, that's real.
• 1:03
  If you ever felt like your energy's gone before your day
• 1:05
  even starts, or like the simplest task turns into a
• 1:09
  mountain climb, then this one's for you.
• 1:12
  Hit the subscribe button if you haven't yet, and make sure to
• 1:14
  stick around till the end to unlock your braces of the
• 1:17
  episode. It's a good one, I promise you.
• 1:19
  But let's get right into this. Let's clear something up right
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  at the beginning. Fatigue with Parkinson's isn't
• 1:25
  just being a little sleepy. It's like somebody unplugged
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  your life force. No warning, no recharge cord.
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  Some days I wake up more exhausted than when I went to
• 1:35
  bed. It's not fixed by a nap, and
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  it's not about being lazy or being out of shape.
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  It's neurological, it's real, and it can hit anyone with
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  Parkinson's and it can hit at any stage.
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  You could be sitting watching TV and suddenly feel like your
• 1:51
  limbs weigh 1000 lbs. Now it's not always medication,
• 1:56
  but sometimes it is. And that's the weird part.
• 2:00
  Sometimes with fatigue comes with medication and sometimes
• 2:04
  from lack of it. Too much dopamine, you feel
• 2:07
  sluggish. Too little, and guess what?
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  You feel sluggish. It's like walking a tightrope
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  with a fan blowing in your face. I've had days where I look at my
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  meds where I took my meds perfectly on time and still hit
• 2:20
  a wall by noon. So if you're dealing with
• 2:22
  unpredictable exhaustion, talk to your doctor.
• 2:25
  It's not always a dosage, but it's worth looking at.
• 2:29
  So that's one way to look at it. You know, let's look at the
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  difference, though, between fatigue and sleepless and and
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  sleepiness. OK, there's an important
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  distinction. Fatigue is not the same as
• 2:39
  sleepiness. Sleepiness is like, I could nap
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  right now. Fatigue is I'm so wiped I
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  couldn't get out of bed even if I tried.
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  And Parkinson's often gives us both, right.
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  Thanks. Parkinson's.
• 2:54
  You're the gift that keeps on giving, aren't you?
• 2:57
  I fallen asleep at red lights. I fallen asleep on a Zoom call.
• 3:00
  I even fell asleep once tearing a haircut.
• 3:02
  Believe it or not, I woke up with half the haircut and a very
• 3:06
  confused Barber. And wasn't that a fun thing to
• 3:09
  wake up to? And you know what the hardest
• 3:11
  part about this is? It's explaining it to others.
• 3:16
  You say I'm tired, right? And what do people say back?
• 3:19
  Me too. I didn't sleep well either, but
• 3:22
  it's not about sleep. Now listen, it's about your
• 3:26
  brain using 10 times more energy to do what used to be automatic
• 3:32
  walking, thinking, even swallowing. 10 * 1 viewer wrote.
• 3:38
  I feel like I'm dragging an invisible anchor behind me and
• 3:41
  that comment really hit home. I love that comment and if
• 3:45
  you've got your own metaphor for exhaustion, drop it in the
• 3:48
  comments because I love to read them.
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  And you know what? I read, I really do.
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  I read and I reply to every single one.
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  So if you want that, please get it in there.
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  But here's the thing with this exhaustion, and let's be honest,
• 4:03
  there's no magic cure. But here's what made a
• 4:07
  difference for me. I plan my day around my on
• 4:11
  times, not wishful thinking. That's the first thing I do.
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  I plan everything around my on times.
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  I don't just try to hope it happens.
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  I try to make it happen. OK.
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  The second thing I do, I build a recovery time after everything I
• 4:26
  do OK, If I got to cut the grass and we have some somewhere to go
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  and and some and you know, Carmen says, hey, we got an
• 4:32
  hour, we have to be here. How long is it going to take to
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  cut the grass? I know it's going to take me
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  half an hour. I build it in another half an
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  hour for for some recovery time. So it's an hour, so build
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  recovery time into everything you do.
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  That way you get that rest back to you.
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  The third thing I do, same as I always say, I use a pill.
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  The pill cap timer reminder, plus the reminders on my phone,
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  plus on the Alexa, plus on my Siri, plus in my car, plus
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  everywhere, plus some sticky notes.
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  I make sure I know when I'm supposed to take that next pill.
• 5:02
  And I do it religiously. And I'll say it again, I've said
• 5:05
  it a million times. Meds on time, every time.
• 5:10
  OK, what's another thing I do? Well, I say no more than I used
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  to. And I know that's a difficult
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  one for people saying no. You feel weak.
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  You feel like you're making up excuses.
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  You feel like, you know, I should be able to do this.
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  I want to say yes, but sometimes you have to say no.
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  You have to prioritize, prioritize, prioritize what is
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  important to you, What is the most important thing every day?
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  What is the thing that if you don't do this today, you're
• 5:38
  going to be the most disappointed by?
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  And that's your number one thing.
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  So plan around that one and say no to the other things that
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  might come up. Like, in other words, I might
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  say no to house cleaning because I want to make sure I'm feeling
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  good when my daughter gets here. So pick what's most important
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  and plan your day around that. And this is a big one and this
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  is one that most of you don't do and I didn't do for a long time.
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  And this is what you need to start doing right away if you
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  really want to help yourself and, and get to another level
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  and get your mindset around what's going on here is this is
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  this. I stopped apologizing for
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  needing rest. I stopped apologizing for
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  needing rest. And you need to stop doing that.
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  It's not your fault you need rest.
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  It's not your fault you've been diagnosed with a brain disorder,
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  a progressive brain disorder with no cure.
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  Boy, that was heavy, right? We were all welcome to this club
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  that nobody wanted to be a part of.
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  But we're here and we're in the club.
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  So stop apologizing for what you need.
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  It's not you. It's Parkinson's.
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  OK, but here's the biggest change.
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  This is the biggest change that I did.
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  The biggest change I did to help myself was track everything,
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  sleep, food, symptoms, activities, because patterns
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  matter and fatigue loves to hide in patterns.
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  I've even made a tracker for it. I really did.
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  And it hides in there. And I'm I'm, I'm going to give
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  you a link to it, OK? I'm going to try my best and if
• 7:14
  it's not quite there, it should be there.
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  But look in the description below and I'm going to put a
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  tracker in for tracking your fatigue, OK?
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  And do it. It'll help you, trust me, it'll
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  help you. So what about you?
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  It's not just about me. This is a community.
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  It's not about Bryce all the time.
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  So I want to hear from you. How about this?
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  What does Parkinson's fatigue feel like for you?
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  Remember that, that description of being like it was dragging an
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  anchor. What does it feel like to you?
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  Drop that in the comments I read and reply everyone, but it's not
• 7:46
  just for me. I I read so many comments where
• 7:49
  people are saying, Bryce, you and your people, you and your
• 7:53
  group, you and your groupies. So if you're a commenter and
• 7:56
  your father, then I guess you're, we're groupies, we're
• 7:58
  doing this together. But your comments, your what's
• 8:01
  what it feels like to you are it's helping people, it's
• 8:04
  helping thousands of people and does not feel good at the end of
• 8:06
  the day. So again, what does what does
• 8:10
  Parkinson's fatigue feel like for you?
• 8:12
  And what's helped or what hasn't helped?
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  Drop it in the comments. Let's Crowdsource this one
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  'cause you never know who your tip might help.
• 8:20
  And if you're watching this while lying down, half dressed
• 8:23
  and questioning whether cereal counts as dinner, here are my
• 8:27
  people. All right, well, listen, if
• 8:30
  you've made it this far, right, then that means you've unlocked
• 8:35
  the Bryceism of the episode. So here you go.
• 8:38
  With Parkinson's, sometimes getting through the day is the
• 8:41
  victory. Resting isn't quitting its
• 8:43
  strategy. Put that on a sticky note or a
• 8:46
  coffee mug. Or maybe I did.
• 8:49
  Hey, if this video made you feel good, give it a like.
• 8:52
  And if you know somebody who's always tired and always blaming
• 8:56
  themselves, send us their way. And if you want to go deeper,
• 8:59
  you want to talk about this a little bit in more in depth,
• 9:02
  join the inner circle. It's a private group, live
• 9:04
  calls, real talk, real people who get it.
• 9:07
  Come join the community. The link's in the description.
• 9:10
  Don't do it alone. And guess what?
• 9:11
  You're not alone in this. We're figuring it out together,
• 9:15
  one day, one video and one story at a time.
• 9:19
  And until next time, what do you always say?
• 9:21
  Keep doing life, and keep doing it today.
• 9:29
  Parkinson's may be part of your life, but it doesn't get to
• 9:32
  define it. Thanks for listening to Living
• 9:35
  with Parkinson's, the good, the bad, and the reality.
• 9:39
  If this episode moved you, helped you, or reminded you
• 9:42
  you're not alone. Share it with someone who needs
• 9:45
  to hear it. Want to go deeper?
• 9:47
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 9:51
  community, and a Direct Line to Bryce.
• 9:53
  You'll find the link in the show notes.
• 9:55
  Until next time, keep showing up and keep doing life today.