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Parkinson’s & Sleep: How to Get Some Damn Rest · Living with Parkinson’s | Bryce Perry

• 0:01
  They told him he had five good years left.
• 0:04
  That was 15 years ago. He's still standing, still
• 0:08
  speaking, still living. This is living with Parkinson's,
• 0:12
  The good, the bad, and the reality.
• 0:15
  A podcast about what happens when life throws you something
• 0:18
  incurable and you fight back anyway.
• 0:21
  Hosted by Bryce Perry, diagnosed at 4015.
• 0:25
  Years into the battle, This is the truth behind the tremor.
• 0:29
  Let's begin. You know what's wild?
• 0:34
  They say that sleep is the best medicine, but clearly
• 0:36
  Parkinson's did not get that memo.
• 0:39
  Falling asleep hard. Staying asleep?
• 0:41
  Forget it. And don't even get me started on
• 0:44
  3:00 AM bathroom breaks, cramping legs, and dreams that
• 0:48
  feel like action movies. Well, if you've ever just stared
• 0:51
  at the ceiling at 3:00 in the morning thinking what the hell
• 0:53
  is going on with my body, well, guess what?
• 0:56
  You're not alone. And that's what we're going to
• 0:57
  talk about today. So let's get into this right
• 0:59
  now. Hey friends, welcome back to
• 1:02
  Living with Parkinson's, The good, the bad, and the reality.
• 1:05
  I'm Bryce, and today we're diving into something that
• 1:07
  affects just about every single one of us, and that's sleep.
• 1:10
  Or actually the lack of it. Now, listen, before Parkinson's,
• 1:14
  I never gave much. Like I didn't give much thought
• 1:16
  to sleep. I really didn't.
• 1:18
  I'd crash at the end of the day and that was that.
• 1:20
  But now, getting a solid night's sleep feels like trying to win
• 1:23
  the lottery while being a Oh my God, I just thought it was my
• 1:27
  head. Oh, my, that's just crazy.
• 1:30
  Anyway, But now getting a good night's sleep tonight, it's like
• 1:33
  winning the lottery and being chased by raccoons in my
• 1:35
  pyjamas. And I'm laughing because that
• 1:38
  was actually a dream I had. So anyway, so I want to share
• 1:41
  with, I want to share with you what I've learned along the way,
• 1:43
  what's messed up my sleep and what's actually helped me rest,
• 1:47
  and the one surprising ship that changed everything for me.
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  And yeah, I'll tell you what didn't work too, because let's
• 1:52
  be honest, there's a lot of advice out there that sounds
• 1:55
  good, but it actually does nothing.
• 1:57
  So let's get right in here and I'm gonna talk about this.
• 2:00
  Like, why is sleep so hard? Like really why?
• 2:02
  And I asked myself, like, I literally some mornings I wake
• 2:04
  up and I'm going, why is this so hard?
• 2:06
  This is ridiculous. Well, let's look at things.
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  Let's look at this. Let's break it down.
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  First things first, why is sleep such a struggle with
• 2:14
  Parkinson's? OK, for me, it's a combo
• 2:16
  platter, right? Stiffness kicks in at night.
• 2:20
  OK, I'm gonna set that really slow just so maybe I'm gonna
• 2:23
  make it sound like I did it on purpose.
• 2:24
  Stiffness kicks in at night, right?
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  My legs do this little twitchy dance like they're trying to
• 2:29
  audition for Cirque du Soleil, right?
• 2:31
  And then there's this splatter like clockwork, middle of night,
• 2:34
  every night. It's like, huh, I guess I got to
• 2:37
  get up. And then if that doesn't happen,
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  you know, sometimes I just wake up drenched in sweat, other
• 2:43
  times acting out dreams, like I'm in some bizarre action
• 2:46
  sequence. And this is the mental side,
• 2:49
  right? Racing thoughts, worries, random
• 2:51
  to do lists. And you know that just show up
• 2:53
  uninvited in my brain, right? It's like my body's tired, but
• 2:56
  my mind just won't shut up. Does that sound familiar?
• 2:58
  Any of that sound familiar? Well, let me share what's helped
• 3:01
  me get to at least, you know, a decent amount of rest.
• 3:05
  And, and I, I premise this by saying this that, you know, I've
• 3:07
  been diagnosed again for over 15 years.
• 3:09
  And if you're new to the channel, welcome.
• 3:11
  Thank you or thanks for joining us.
• 3:12
  Something that's just happening. We're just exploding here.
• 3:15
  Just started not that long ago and so welcome.
• 3:18
  So let me share a little bit about my journey.
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  And I won't share a lot because there's a lot of videos and you
• 3:23
  can go catch up and let's let's catch up so we can go together
• 3:26
  this way. But I've been diagnosed for
• 3:28
  almost 15 years. And when I first I would say
• 3:31
  like the first 5 or maybe the five, five or six years I would,
• 3:36
  there's probably like every couple of months I would have
• 3:39
  this day that I was so tired that I was so, so tired.
• 3:41
  But then I couldn't sleep. And it's such a weird type of I
• 3:45
  can't sleep, right. It's not like I think anybody
• 3:48
  would understand. I think that if and I think
• 3:50
  that's probably an issue, like you probably maybe have somebody
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  in your life, if you do, who's saying, you know, just try to
• 3:55
  sleep or try this or try that or, you know, just, you know,
• 3:58
  count to count sheep or, you know, count to 99 backwards.
• 4:01
  And I don't think they, they don't, if, if you don't go
• 4:03
  through what we're go, what we go through, then you'd really
• 4:05
  don't just, it's just, I can't explain it, but it's like, I'm
• 4:10
  just awake. It's like the daytime for me.
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  There's, there's not even a closeness like I'm, I am not
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  going to sleep, but I know it. And it's, it's crazy.
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  And so anyway, I used to have those like maybe once or twice a
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  month, maybe in the beginning, maybe a month, once a month in
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  the beginning. And as it progressed, you know,
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  a couple times a month and, or if I was extremely tired, I
• 4:27
  travelled a lot in with my, my, my, my job back in the, in the
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  1st 5 to 10 years of my diagnosis.
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  And I, if I travelled a lot, I would, I would just be
• 4:36
  completely exhausted. And I would be so exhausted, I'd
• 4:39
  fall asleep for a little bit, maybe a quick nap.
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  And then I'd get to bed and I'd just lie there cursing at the
• 4:45
  ceiling, 'cause I'm just staring at the ceiling.
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  And I'm thinking, well, I can't get out of bed.
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  So if I get out of bed, it's going to make it worse.
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  If I move around, it's going to be worse.
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  And you know, eventually I just kind of ended up just getting
• 4:54
  out of bed because there's might as well work or do something
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  productive because I'm just lying here staring at a blank
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  ceiling. But as time progressed, I
• 5:03
  started getting them maybe once a week.
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  And there are weeks now that when I'm not really on my game
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  and I'm not really, you know, doing a lot of self-care and you
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  know, let's be honest, we can all get there.
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  Sometimes I can go 2 nights in a row, three nights in a row a
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  week of just not sleeping. So it's really important to get
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  our sleep and, and I know that you're watching this, you're
• 5:21
  probably thinking you have me too, or you have me too, or, and
• 5:23
  if you're sitting here going, hey, never ever even worried
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  about this. Well, then don't, don't go away
• 5:28
  because again, partisans, unfortunately is a progressive
• 5:31
  disease. And so if you're not dealing
• 5:33
  with this now, you might have to deal with it later or you
• 5:35
  probably will have to deal with it later.
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  So you might as well get some tips now.
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  And what I've learned, what I've learned with my journey.
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  And again, just remember they're, they're my tips.
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  It's what works for me. But hopefully you can get
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  something, maybe one or two tips or and maybe they all work and
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  maybe they don't. You know, again, we're all
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  snowflakes, right? We're all a little bit different
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  and what works for me and might not work for you, but but I'll
• 5:55
  tell you this, everybody that I've talked to that I've kind of
• 5:57
  shared some, they can always get something and that something
• 5:59
  will help. So if you like that, hit the
• 6:02
  like button like that. I'm like a YouTube now anyway,
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  Anyway, again, thanks. So let me share what's helped
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  for me, right? And at least give me some decent
• 6:11
  sleep, some decent rest. The thing that I had to learn
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  first of all was routine. Now I'm not a routine based
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  person, you know, I'm just not like I know I know and boring.
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  But sticking to the same bedtime and wake up time has helped more
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  than anything else. Like it sounds so boring, like a
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  routine. Oh God, here we go again.
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  You know, it's routine, but it is, it really is.
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  If you have, if you try your very, very best to get up at the
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  same time everyday and go to bed at the same time every night.
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  And when that's weekend during the week, it doesn't matter.
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  Do it right and try to get into that schedule, right.
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  And that, that's a huge part. It's helped me enormously.
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  And I'm not saying it's easy. I, I, I struggle with that or
• 6:49
  there's an event going on or, and whatnot.
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  So no one's perfect at it and nor will you be, but to the best
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  of your ability, right? And then the other part of that
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  too is I try to wind down. Like I have to wind down.
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  So a lot of us get into bed and part of our wind down is laying
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  there trying to sleep. And that, that's not conducive
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  to your brain. So try to wind down.
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  And when I say that, I mean without screens, I mean without
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  like your little phone going or your, or your iPad or your app
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  and, or whatever your app, your iPad or your phone or whatever
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  it is, your, the television, you know, on the like, you know, on
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  the wall in the bedroom or wherever you are.
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  And, and if you're watching this trying to sleep, just bear with
• 7:28
  me a few minutes and, and then we'll, we'll don't turn it off
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  yet, but then we'll let you go and, and hopefully get a good
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  night rest after this. But wind down without screens,
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  right? And then maybe do a stretcher a
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  little like just a little bit of stretching, like, and I mean, I
• 7:41
  don't mean anything rigorous, but you know, just like I
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  stretch out. Those muscles are stiff, they're
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  sore. It's been a long day store.
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  They're sore and it's been a long day.
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  So stretch them out a bit and then do some breathing.
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  Let's lie in bed and just do some, some pattern reading where
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  it's like that deep breath in, you know, inhale with your nose
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  and exhale with your, your, your mouth, right?
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  Inhale with your nose, exhale with your, with your mouth,
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  right? Nothing fancy, but just
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  consistent. OK, nothing fancy, but
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  consistent. So again, get that routine in
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  order Plan this into your routine.
• 8:10
  Just a couple little things stretch it out.
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  You're doing a little mind relaxing If you don't realize
• 8:14
  what you're doing. A little mind relaxing, a little
• 8:16
  body relaxing, right? Keep the room cooled and dark
• 8:21
  right? And you know, some of you might
• 8:22
  need some white noise. I have a fan that goes off makes
• 8:25
  this weird noise and irritates me during the day and somehow
• 8:30
  kind of helps me at night. So for me anyway, a cool room
• 8:33
  because I'm again, I'm profusely sweat at night.
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  So the cooler I keep it even some cool sheets and if you
• 8:40
  don't know what cool sheets and cool bedding are with a link in
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  the description below, you can check that out, but they work.
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  They work really, really well and again, dark, dark space turn
• 8:49
  the television off, turn the lights off and get going.
• 8:52
  But these three things are magic, right?
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  I use the fan not for breeze, but for the sound.
• 8:57
  And it helps keep it helps quiet the noise in my head, right?
• 9:00
  The light stretching before the bed.
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  It's been great for my legs. And it's not about becoming a
• 9:04
  Yogi. It's not about becoming a Yogi,
• 9:06
  just enough to tell my body, hey, we're done for the day.
• 9:08
  What you're really doing, It's like, have you ever heard the
• 9:10
  Pavlobs? You know, you ring the bell, the
• 9:12
  dog eats, eat, ring the bell, the dog eats, ring the bell, the
• 9:14
  dog eats. You're trying to get your body
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  into like you're setting off signals to your body that you're
• 9:19
  going to bed, right signals your body so that little stretch
• 9:22
  before bed just to do it the same every night the same and
• 9:25
  try to do at the same time. And really what you're telling
• 9:28
  your body is I'm getting ready for bed.
• 9:29
  Those deep breathing, I'm getting ready for bed right.
• 9:32
  That it it's amazing what it does and then what I do as well.
• 9:36
  Just some added stuff. And you can see that in the
• 9:38
  video. I think it was the last video we
• 9:40
  just did or the video before I do the, the, the spray, I do the
• 9:44
  whatever spray on my, on my feet.
• 9:46
  Again, all the links are in the description.
• 9:47
  Check it out. And it's what works for me.
• 9:49
  And you also check out that video about what works for me
• 9:52
  the best. And that's one of the things
• 9:53
  it's the magnesium spray that my, I thought my wife was nuts
• 9:57
  when she bought it for me and now I'm so thankful for it.
• 10:00
  And then melatonin, right? Sometimes helpful, sometimes
• 10:02
  not, doesn't work for me. But talk to your doctor if you
• 10:05
  think about using it. And that's a big thing.
• 10:08
  I would try it. It doesn't hurt to try it again
• 10:10
  just for me. It made me groggy in the
• 10:11
  morning, but maybe it's worth a while to give it a shot.
• 10:15
  So to get that routine in order, try to keep your routine
• 10:18
  consistent. The other thing you want to do
• 10:19
  is I, I time my meds better, right?
• 10:21
  And you might have to, you might have to look at that as well as
• 10:23
  timing those meds better, right? That can be a total game
• 10:26
  changer. Once I figured out how my
• 10:28
  evening dose lined up my sleep window, things got way better
• 10:32
  for me, like way better for me. And now the other thing I do and
• 10:35
  I, and I, I kind of, I didn't, I didn't share this on my
• 10:38
  medication video like the first to five to 10 to 15 years, but
• 10:42
  I'm taking a, a slow release cap levanopa at night.
• 10:46
  And, and the reason why I didn't bring it up yet.
• 10:47
  And I'm not really going to bring it up that much right now.
• 10:49
  It's just, I'm just trying it out.
• 10:50
  So I, I want to try it first, see how it works for me so that
• 10:54
  I can guide you. Oops, because I can guide you
• 10:56
  better and give you some, some answers on that.
• 10:58
  So I am trying that as well. So again, hit that magnesium
• 11:01
  spray, try the melatonin, but again, get that routine in
• 11:04
  order. OK, well, here's something that
• 11:06
  that didn't work for me, right? This.
• 11:08
  I'll tell you some stuff that didn't work.
• 11:09
  I might as well be honest. And then here's that honesty
• 11:12
  part. Like I've tried some stuff that
• 11:14
  sounded amazing, but it totally flopped for me.
• 11:16
  One would be CBD oil. You know, everybody was talking
• 11:19
  about it. Everybody.
• 11:19
  Like you got to try it, you got to try it.
• 11:20
  My kids are like, you got to try it.
• 11:21
  Everybody's like you got to. Try it.
• 11:23
  It's not, you know this, it's not you know what it it's not
• 11:25
  the whatever you call that, but you have to do it.
• 11:28
  So it's it'll be a game. It'll just going to change your
• 11:30
  life. And I tried it and nothing
• 11:32
  happened like it nothing changed.
• 11:34
  And maybe it works for some, but not from not for this guy
• 11:37
  anyway, not for this guy, but it maybe it works for you.
• 11:39
  I don't know. Maybe in the comments.
• 11:41
  Let me know what's working for you.
• 11:42
  Is it have you tried CBD oil? Does it work?
• 11:44
  Does it not work? Maybe I tried the wrong stuff.
• 11:46
  I don't know. I asked the guy and and he gave
• 11:49
  me the what he said was for Parkinson.
• 11:51
  And all I know is it just there was AI dripped into my mouth.
• 11:55
  I could with a like a thing and I might as well have just
• 11:59
  dripped water in there just did nothing for me.
• 12:01
  But anyway, it might be working for you.
• 12:04
  The other thing I tried that I didn't like and I didn't like at
• 12:06
  all was a weighted blanket. And because people were telling
• 12:09
  me try to get a weighted blanket, try the weighted
• 12:10
  blanket. Well, I did, I try, I try
• 12:12
  everything like my, my philosophy in life is you might
• 12:14
  as well try, right? You might as well try.
• 12:16
  And they always, you know, they always say, you know, reach for
• 12:18
  the stars and if you if you miss it, maybe just get to the moon.
• 12:21
  But I always going to give something a shot if it's healthy
• 12:24
  and safe and my doctor says it's good to go, I'll try it.
• 12:26
  So the weighted blanket for me, it felt like I was being pinned
• 12:29
  down by like a like when I was like a young dad, like by my
• 12:32
  stubborn toddlers, like it was, it was just crazy.
• 12:34
  I was just felt pinned down and I get claustrophobic and Oh my
• 12:37
  God, I was like losing, I was almost losing my mind.
• 12:39
  I was like, I why did I even do this?
• 12:41
  I'm going nuts. I couldn't move my wiggle my
• 12:42
  toes and Oh my God, it was awful.
• 12:45
  So that didn't work. So that at all.
• 12:46
  And the other thing that people tried to tell me to use was
• 12:49
  sleep teas, like the, the teas like teas that are with the that
• 12:53
  are supposed to make help you sleep.
• 12:56
  That to me just tastes like hot disappointment, right?
• 12:58
  I just, I still woke up five times that night and then I had
• 13:01
  to pee three more times. So obviously it didn't work that
• 13:04
  well for me, but again, those may work for you, but they just
• 13:07
  didn't work for me. And for me they just weren't
• 13:09
  worth the hype. So if you want to try and try
• 13:11
  them and I'd really like, I'd really don't know if you are
• 13:13
  using those things that I just talked about and they are
• 13:16
  working for you, then please put it in the comments because I
• 13:18
  don't want to leave anybody straight it what it might work.
• 13:20
  Just again, this was the what work didn't work for me at all.
• 13:24
  But I want to tell you like the one thing that actually helped
• 13:26
  me the most, right? You know what it was you ready
• 13:30
  for this? And there's no link in the
• 13:31
  description below on this one. It was acceptance.
• 13:35
  What helped me the most, the game changer for me was it was
• 13:38
  acceptance. Not giving up, just letting go
• 13:42
  of that pressure to sleep perfectly.
• 13:44
  You know, I, I, I stopped beating myself up for waking up,
• 13:47
  right? I stopped lying there feeling
• 13:50
  tense and frustrated, you know? And now if I'm up, I just get
• 13:54
  up. I read, I write, I journal, I
• 13:56
  breathe. And weirdly enough, once I
• 13:59
  stopped fighting it so hard, I started sleeping better.
• 14:02
  It was like the craziest dichotomy.
• 14:04
  The minute I I like literally have you ever heard that anxiety
• 14:07
  leads to anxiety, right? You know, it's like someone
• 14:10
  starts thinking about they don't want to have a panic attack or
• 14:12
  they think something might give a panic attack and they start
• 14:14
  thinking about the panic attack and then they have a panic
• 14:16
  attack. The more you lie there thinking
• 14:19
  about not sleeping and, and, and almost getting upset.
• 14:22
  Why me? Why can't I sleep?
• 14:24
  This sucks. I'm tired.
• 14:25
  I'm going to be a grumpy tomorrow, you know, no one's
• 14:28
  going to like me tomorrow, that type of thing.
• 14:30
  And if you just accept the fact that it's not going to happen
• 14:35
  like this is the way it is. I've tried.
• 14:36
  I've got my things in place. I did what I need to do.
• 14:39
  You know, I tried these things. I got my routine in order.
• 14:40
  I'm doing the things I need to do, and it's not working.
• 14:44
  All right. OK, OK, then just get up.
• 14:49
  Get up and do something productive.
• 14:51
  Do up, get up and write your doctor journal.
• 14:53
  You know, your diary, your journal, whatever it might be,
• 14:55
  but you just accept it. And that to me is just
• 14:59
  radically, radically, radically changed my mind or my
• 15:03
  chronically changed my attitude towards it.
• 15:06
  And it radically actually started helping me sleep.
• 15:08
  It was crazy. Anyway, like that.
• 15:10
  So yeah, like, that's, that's sleep.
• 15:11
  And Parkinson's, it's not exactly our best friend, but
• 15:15
  they don't have to be our enemy either.
• 15:17
  The there are certainly things you can try and there are
• 15:20
  patterns you can learn. And there is hope because
• 15:22
  getting some rest is always better than none.
• 15:26
  So here's my challenge to you. Drop a comment and tell me what
• 15:28
  helps you sleep. Let's Crowdsource this things
• 15:31
  for some real life advice for the rest of the community.
• 15:34
  You never know, your tip might change someone else's night.
• 15:37
  Listen, thanks for hanging out for me.
• 15:39
  Hanging out with me. I love the love, love where
• 15:42
  we're going. I love the community we're
• 15:44
  building. I'm glad you're here and I'll
• 15:46
  see you next time. Because you know what?
• 15:48
  There's hope. Here's hoping tonight that we
• 15:51
  all get some damn rest. Parkinson's may be part of your
• 16:02
  life, but it doesn't get to define it.
• 16:05
  Thanks for listening to Living with Parkinson's, the good, the
• 16:08
  bad, and the reality. If this episode moved you,
• 16:12
  helped you, or reminded you you're not alone.
• 16:15
  Share it with someone who needs to hear it.
• 16:17
  Want to go deeper? The Inner Circle is waiting.
• 16:20
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 16:24
  Bryce. You'll find the link in the show
• 16:26
  notes. Until next time, keep showing up
• 16:30
  and keep doing life today.