Latest / Living with Parkinson’s | Bryce Perry / How to Explain Parkinson’s Fatigue to Friends & Family

Transcript

How to Explain Parkinson’s Fatigue to Friends & Family · Living with Parkinson’s | Bryce Perry

• 0:00
  Have you ever tried to explain Parkinson's fatigue and they
• 0:03
  look at you like you just said you're tired from, I don't know,
• 0:06
  a Netflix binge? If only were that simple.
• 0:09
  This isn't the I stayed up too late kind of tired.
• 0:12
  This is my body battery is stuck at 3% and never fully charges
• 0:17
  tired. Well, today I'll show you
• 0:18
  exactly how to explain it to friends and family so they
• 0:21
  finally get it without you feeling guilty or misunderstood.
• 0:25
  And make sure to stick around to the end because I've got a Bryce
• 0:27
  ISM. That's the perfect one liner for
• 0:29
  the next person who says to you, you just need more sleep.
• 0:33
  Welcome to Living with Parkinson's, The Good, the Bad,
• 0:37
  and the Reality. Real talk, real life, real
• 0:41
  community with Bryce Perry. Let's begin.
• 0:45
  Well, welcome to the broadcast. I want to thank my loyal viewers
• 0:48
  for always coming back and sticking with me.
• 0:51
  And if you're new here, my name is Bryce and this is Living with
• 0:53
  Parkinson's, The good, the bad, the reality.
• 0:55
  And this podcast is all about providing strength and hope and
• 0:58
  support to individuals living with Parkinson's and their
• 1:01
  caregivers. I share motivational stories,
• 1:04
  tips, and insights to help you navigate life with Parkinson's.
• 1:07
  And if you're looking for that type of contact, make sure to
• 1:09
  subscribe. OK, today's program is how to
• 1:13
  explain Parkinson's fatigue to friends and family and anybody
• 1:16
  else for that matter. And let's dive in.
• 1:19
  You know what Parkinson's fatigue really is.
• 1:21
  So first of all, Parkinson's fatigue is not the same as being
• 1:25
  tired. Being tired is like your phone
• 1:28
  battery running low at the end of the day.
• 1:30
  Fatigue is like having a phone that never charges past 30% no
• 1:35
  matter how long you have it plugged in.
• 1:37
  You know, some days I wake up feeling like I've already done a
• 1:40
  full day's work before I even had breakfast.
• 1:42
  And no, a nap doesn't magically fix it.
• 1:46
  It's not just it's not just physical either.
• 1:49
  It's mental. That brain fog where even a
• 1:51
  simple decisions feel like they're solving a complicated
• 1:54
  puzzle. You know, I'll never forget a
• 1:58
  friend inviting me to a barbecue and me just saying, you know, I
• 2:01
  can't, I'm too exhausted. And he said back, well, you can
• 2:05
  just sit while you're there. You don't have to do anything.
• 2:07
  I laughed because I laughed because not because it was
• 2:12
  funny, but because it showed how little people understand sitting
• 2:16
  down doesn't fit fix fatigue. It's not about what you're
• 2:20
  doing. It's about the energy that your
• 2:22
  body has to begin with. So I went anyways, right?
• 2:27
  But I spent most of the time leaning against the patio
• 2:29
  railing, pretending I was just enjoying the fresh air inside.
• 2:33
  I felt like I'd run a marathon in wet jeans.
• 2:37
  So how about some practical scripts that you can that you
• 2:41
  can use when someone is saying this?
• 2:43
  And here's how I explain it now. And you can steal these.
• 2:46
  You can steal these one liners. Seems like a script for you.
• 2:48
  OK, foam battery. Imagine your foam battery only
• 2:51
  charges to 30% no matter what. Well, that's me most days,
• 2:55
  right? You can say that to to kind of
• 2:57
  kind of get people to understand and realize, OK, here's another
• 3:01
  thing you could say. And again, I'm just throwing
• 3:02
  things out that you can use. Here's here's another thing I
• 3:05
  say. I talk about the gas tank,
• 3:06
  right? I start with a half a tank and
• 3:10
  every little thing drains it, even getting dressed.
• 3:13
  Imagine that. So imagine somebody says, well,
• 3:16
  just come, just come and sit down.
• 3:18
  You don't have to do anything. You just have to be there.
• 3:19
  And it's like, OK, but let me explain.
• 3:21
  I'm like a gas tank, you know, and again, if you want to save
• 3:25
  this video and you can come back and look at these things or stop
• 3:27
  and pause and write them down. OK, Sometimes I I use this one
• 3:31
  here and this is like an old elevator one.
• 3:33
  OK, so my body is like an old elevator.
• 3:36
  It still works, but it's slow and sometimes it stops between
• 3:39
  floors. And usually when I say things
• 3:42
  like that, they kind of go, ah, I get it, right?
• 3:46
  I get it. How about you?
• 3:47
  Is that something that you say? Do you have one of these one
• 3:50
  liners that you use to try to kind of bridge that gap?
• 3:53
  And if you do put them in the comments, let me know.
• 3:55
  I'd love to hear what you have to say and start a conversation,
• 3:58
  right? But here's some things I want
• 4:00
  some things not to say. Here's what you don't say #1 I'm
• 4:06
  just tired. You tend to say I'm tired.
• 4:09
  Don't you say I'm tired? Because they'll think it's
• 4:11
  fixable with a nap. Have a nap once you lay down for
• 4:14
  a little bit and then we'll do it right or or whatever.
• 4:18
  It doesn't work. They don't, it's not, you're
• 4:20
  not, you're not explaining it right.
• 4:22
  You're just kind of saying it and they don't quite get it.
• 4:24
  You know, somebody doesn't walk in the shoes that you walk in.
• 4:28
  They don't understand it. So you have to have that
• 4:30
  patience to explain it to them. How about this another thing,
• 4:33
  Don't just say I didn't sleep well, right?
• 4:36
  Because if you just say I didn't sleep well, they'll think it's a
• 4:38
  one off, right? It's just a one time thing.
• 4:40
  Well, OK, get better sleep then instead, give them a picture
• 4:44
  that they can that they can't Unsee.
• 4:47
  Give them a picture that they can't Unsee.
• 4:50
  You know, in just a minute, I'll give you that Brycism that's
• 4:52
  perfectly sums up Parkinson's fatigue.
• 4:54
  It's short, it's true, and it might just save you a very long
• 4:58
  explanation. But how about this?
• 5:01
  Let's talk about a common myth about fatigue.
• 5:04
  And I want to bust. I want to bust a few myths right
• 5:06
  now. Myth #1A nap will fix it.
• 5:09
  Nope. To be honest, sometimes it makes
• 5:11
  it worse. Sometimes that nap makes it
• 5:14
  worse. Sometimes you get a little bit
• 5:15
  of rest and your body's like, oh, I love that.
• 5:18
  And he wants more. And you feel even more tired.
• 5:21
  OK, how about another myth? Here's another myth.
• 5:23
  Let's bust this out right now. Myth #2 If you exercise more,
• 5:28
  you'll have more energy. OK, now exercise is great for
• 5:33
  Parkinson's, but it's not the magical fatigue cure, OK, It's
• 5:38
  just not. Here's another myth.
• 5:41
  Myth #3 Well, you don't look tired.
• 5:46
  Well, I love that one, you know? Well, my face didn't get the
• 5:49
  memo, but my body sure did. So, you know, I maybe not look
• 5:53
  tired, but do you think I'm lying to you?
• 5:55
  Do you think I'm just making something up, right?
• 5:57
  Have you heard any of these things like that?
• 5:59
  Drop them in the comments. Let's build a list of the most
• 6:01
  frustrating or the funniest things that people say to you
• 6:04
  about this, because I think it's really important to kind of sit
• 6:07
  on that and look at it. You know, I remember this this
• 6:10
  time and again. And here's how you know that you
• 6:13
  have to kind of give more of an explanation.
• 6:15
  OK, I said it was, it was actually, I'm not going to throw
• 6:18
  them under the bus. It's somebody that I'm related
• 6:20
  to. And, and they were kind of going
• 6:23
  like, look, and, and what's funny about it is these are
• 6:26
  people that tell me, hey, don't you know, take your time, you
• 6:28
  know, take your time. I know, you know, things are
• 6:30
  different for you. I know you've got this thing.
• 6:33
  But I remember them saying, you know, I, I, they wanted me to
• 6:36
  come out for dinner and I, I just, I was, couldn't, I was
• 6:39
  too, I was exhausted. I was tired.
• 6:41
  And I remember them saying, well, can you just come for
• 6:43
  dinner? And I'm like, well, no, I'm,
• 6:44
  I'm, I'm, I just can't today. I'm just really exhausted.
• 6:47
  And they go, why? Why are you so tired?
• 6:51
  You know, I don't know. I just didn't get a good sleep
• 6:53
  because, you know, you think you just want to give him that quick
• 6:54
  one answer. I just didn't get a good sleep.
• 6:57
  OK, well, you know, well, that's OK.
• 6:58
  Then you'll come tomorrow and I'm like, well, we'll see how I
• 7:00
  feel tomorrow. We'll get a good sleep.
• 7:02
  And I'm like, I wish I could get a good sleep.
• 7:04
  Have you ever had those weird, crazy conversations?
• 7:08
  So instead of going through this entire kind of back and forth,
• 7:12
  back and forth, use one of those analogies.
• 7:15
  So use one of those scripts. You know, I could have had a
• 7:17
  great sleep last night. It doesn't matter how I slept
• 7:20
  last night, good or bad, doesn't matter what I did today.
• 7:23
  I could have moved one of my kids into a new apartment, or I
• 7:26
  could have just laid on the couch.
• 7:28
  But Parkinson's does something to my body that I cannot
• 7:32
  control. And sometimes I don't even know
• 7:35
  if I'm sometimes I'll be driving and it just hits me, right.
• 7:38
  So you just have to explain that and go through it.
• 7:41
  And again, I know sometimes you think it's just easier to say
• 7:43
  I'm tired or I didn't sleep well.
• 7:44
  Don't worry, I'm just didn't sleep well.
• 7:46
  Or, you know, I'll be different tomorrow.
• 7:47
  But again, I think sometimes if you really break that down, a
• 7:50
  lot of times that leads to more discussion.
• 7:53
  OK, so the next time that you have to explain Parkinson's
• 7:57
  fatigue, keep it visual, keep it simple.
• 8:00
  And remember, it's OK if they don't get it right away.
• 8:03
  You're teaching them something that they've never had to think
• 8:06
  about. All right, if you made it this
• 8:08
  far, you've unlocked the price system for the day.
• 8:11
  Here it is. You ready with Parkinson's
• 8:13
  fatigue? It's not about running out of
• 8:14
  energy. It's about never getting a full
• 8:16
  charge to begin with. What's the funniest or the most
• 8:20
  frustrating thing that someone's ever said to you about fatigue?
• 8:23
  Drop it in the comments below and let's build a library of
• 8:26
  wish They understood moments. And remember, you don't have to
• 8:31
  do Parkinson's alone. Join the movement and be a part
• 8:34
  of this community. And it's a community that gets
• 8:37
  it. And until then, I want you to do
• 8:40
  life, and I want you to do it today.
• 8:43
  Parkinson's may be part of your life, but it doesn't get to
• 8:46
  define it. Thanks for listening to Living
• 8:49
  with Parkinson's, the good, the Bad, and the Reality.
• 8:53
  If this episode moved you, helped you, or reminded you
• 8:56
  you're not alone, share it with someone who needs to hear it.
• 9:00
  Want to go deeper? The Inner Circle is waiting.
• 9:03
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 9:06
  Bryce. You'll find the link in the show
• 9:08
  notes. Until next time, keep showing up
• 9:12
  and keep doing life today. Parkinson's may be part of your
• 9:21
  life, but it doesn't get to define it.
• 9:24
  Thanks for listening to Living with Parkinson's, The good, the
• 9:27
  bad, and the reality.