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Living with Parkinson's: The Emotional Battle · Living with Parkinson’s | Bryce Perry

• 0:01
  They told him he had five good years left.
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  That was 15 years ago. He's still standing, still
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  speaking, still living. This is living with Parkinson's,
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  The good, the bad, and the reality.
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  A podcast about what happens when life throws you something
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  incurable and you fight back anyway.
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  Hosted by Bryce Perry, diagnosed at 4015.
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  Years into the battle, This is the truth behind the tremor.
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  Let's begin. Hey everyone, welcome back to
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  Living with Parkinson's, The good, the bad and the Reality.
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  And I'm Bryce. And today we're talking about
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  something that so many people experience, but they don't
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  always talk about. And that's the emotional side of
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  Parkinson's. You know, we spent a lot of time
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  talking about the physical symptoms, you know, the tremors,
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  the, the stiffness, the medication.
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  But what about the mental and emotional toll?
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  And what about the guilt? What about the guilt of needing
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  help for things that you used to do yourself, or the frustration
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  of feeling like your body just won't cooperate?
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  Or how about that awful feeling of being a burden to your
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  family, your friends, and even at work?
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  Can you relate? I sure can.
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  Because if you ever felt like this, I want you to know that
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  you're not alone. That this is something I
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  struggled with too. And today I want to open up
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  about it. I want to share some of my own
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  experiences, and I want to talk about ways to shift your
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  mindset. And I just want to get right
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  into this because it's that important, You know, you don't
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  realize how much you take, how much you take independence for
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  granted until Parkinson's starts making everyday, like everyday
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  tasks harder. Like everything you do is just
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  harder, harder and slower. I remember the first time that I
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  had to ask for help tying my shoes.
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  It was such a simple thing, but suddenly my hands weren't
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  working the way they used to. And I was like, really
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  embarrassed. I felt super embarrassed and in
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  my head I kept thinking to myself, I should be doing this.
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  Like why can't I do this? I should be doing this.
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  It was absolutely, it was an awful, awful experience at the
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  time. It was just, I was like, I was
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  mortified. I was actually mortified, you
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  know, and I'm sure you, if you know you have Parkinson's, where
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  your loved ones have Parkinson's, I'm sure you're
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  experiencing this. So if you ever had that moment,
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  that moment where you like, hesitate to ask for help just
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  because you don't want to bother someone, and then why do we do
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  that? You know, there's a lot of
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  reasons why, you know, or actually before we get to why do
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  we do that? What about some examples?
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  Have you ever had to ask somebody to open up a jar for
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  you? Like a pickle jar or a jar, just
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  a jar, like ask your spouse or, or what not?
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  I mean, I was the jar guy. I mean, when I had young kids in
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  the house, it was always take the jar to daddy and daddy will
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  open it up. So that first time I had to ask
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  for that, it was awful. It was ridiculous.
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  Or how about relying on someone else to drive because you can't
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  anymore? And I'm saying that because I
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  can still drive. I'm happy.
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  I'm happy, happy, happy for that.
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  I'm really excited. I can still drive.
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  But I do know that my my, my reflexes aren't as fast.
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  I know that, you know, I go a lot slower than I used to go.
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  I don't think that's not pretty sure that's on purpose.
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  And I'm pretty sure many other people glad that I don't go as
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  fast, especially my mother and my father.
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  I'm glad that I don't drive the way I used to drive, but I know
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  that day's going to come and I know that I'm going to feel this
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  way again, right? How about this?
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  Have you ever had to like change plans at the last minute because
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  you're having an off day? Have you gone through that?
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  That's weird, right? And especially if it's something
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  really important, like if you're going to a birthday party or an
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  anniversary party or something, something big and you just know
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  you can't do it. And I don't mean you can't do it
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  because you're feeling like, you know, just not up to it or you
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  feeling kind of you don't really want to go.
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  I mean, where you're really having an off day and there's no
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  way, like you would never miss this opportunity to be at this
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  place, but you just can't do it. It's awful.
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  And then if there's other people involved, like if you're going
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  with your spouse or friends or your family, how guilty do you
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  feel like that guilt just creeps in because you don't want to
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  feel like a burden. You don't want people to think
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  you're helpless. But let me tell you something,
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  needing help doesn't make you weak.
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  And I had to really learn that. And let me say that again,
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  needing help does not make you weak.
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  You know, the people who love you, they want to help, you
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  know, they don't see you as a burden.
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  They see you as family, they see you as a friend.
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  They see you, they see you as somebody that they care about.
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  And I get it, I get it, I get it.
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  Sometimes the hardest part is just convincing yourself of
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  that. And I get it because I've been
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  there and I've done that. And I still do that in certain
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  instances. And sometimes even when I think
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  that I've conquered this and I'm, I've got the right mindset
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  and I've, I've, you know, mastered everything, something
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  will happen. It'll creep up, right?
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  And it's that frustration. And let's talk about that.
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  You know, let's be honest, sometimes Parkinson's, is this
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  really damn frustrating? I almost said the F word there
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  might have scared some of you away, but it's really damn
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  frustrating. You know, your mind is sharp,
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  but your body won't cooperate. You want to move fast, but
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  stiffness slows you down. You know what you wanted to say,
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  but your voice doesn't always come out that way.
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  Oh my gosh, it doesn't come out the way it used to come out.
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  And, and that's me. I, I, that video 2 times ago or
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  two, two times ago, 2 episodes, I think it was 2 episodes
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  before. I mean, literally sitting here
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  saying that somebody wanted me to get a second and a third and
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  a fourth and I stalled. Like after diagnosis, they
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  didn't believe I had Parkinson's.
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  They wanted me to get a second, a third and a fourth.
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  And I, I finally gave up and it was almost mortifying because I
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  these are like live to tape, so I have to go with it.
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  And I'm like, how, what's the word?
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  So I actually said said, you know, hey, if you know the word,
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  help me out, put in the in the comments.
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  And I think a couple of people got it.
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  They're like opinion, second and third, fourth opinion.
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  I'm like opinion, like opinion. I can see the word opinion.
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  I know the word opinion. I've said the word opinion a
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  million times and I just couldn't get my mouth to say it.
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  And those times really, really frustrate me, like really do.
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  And I think the other thing that would frustrate me as well is,
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  is the mornings like, and I've said this before, in the
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  mornings are my hardest time. Like I wake up, I'm stiff, I'm
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  slow, I'm foggy, and it takes my meds to kick in like 30 minutes
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  or something. And during that time, I, I, the
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  best way to describe it is while I'm waiting for meds to kick in,
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  I'm lying in bed. I just feel stuck.
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  I feel stuck. And I've, I've said, you know, I
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  feel like the tin man from Wizard of Oz, you know, just,
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  you know, I need to get some oil before he gets going.
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  And that's me. I'm just laying there waiting
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  for this Levitt open to kick in so that I can get moving again
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  and slowly but surely. And it's very frustrating
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  waiting for your body to catch up to your, to your mind.
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  And that's something so new, right?
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  Your body catching up to your mind.
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  Usually my body is like go, go, go.
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  My mind's like stop, stop, stop, you know, like it's like crazy
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  stuff. Like my body's like a rebel or
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  used to be. Actually it's, it's an
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  interesting point there. I think my body used to be a
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  rebel in my mind was like, or was it my mind was the rebel.
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  My body was unwilling. But you know what, Maybe they
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  did always argue with each other.
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  I don't know, just get some self therapy here.
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  But it's just very frustrating to me when my mind wants to do
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  something or know something and my body again, it just doesn't
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  cooperate and it pretends like it doesn't know what the heck's
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  going on. That's when I get into those why
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  me moments. Have you had those?
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  Have you had those whiny moments?
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  You know, those times when you think, I didn't ask for this, I
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  didn't do anything to deserve this.
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  This isn't fair. You know what?
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  Here's the truth. You know what?
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  You're right. You're absolutely 100% right.
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  It is not fair. But here's the one thing that we
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  we don't get to choose our circumstances, do we?
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  We don't, we don't get to choose our circumstances, but we do get
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  to choose how we react. We do get to choose how to react
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  to them, don't we? And that's what I try to remind
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  myself when that frustration kicks in.
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  I've got it. This is happening to me, right?
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  It's happening to me. I can choose to be pissed off
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  and grumpy and mad, or I can be like, huh, OK, I don't want
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  this. I just remind myself that this
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  is just trying to frustrate me. Think about it that way.
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  This Parkinson's is trying to frustrate me and the less
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  frustrated that I get with, with myself and with my body, it's
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  sort of like the better I feel. It's like, again, I'm winning.
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  It's like this fight. It's like, it's like we're
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  having this fight against Parkinson's And, and if you have
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  Parkinson's, you know what I'm talking about.
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  You really know what I'm talking about.
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  And if you don't, if you're a loved one or you, you know, a
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  loved one or loved somebody who's has Parkinson's, hopefully
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  I may be described in a way that makes a bit bit of sense, right?
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  It's like it's just very, very frustrating.
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  So there has to be some patience if you're a caregiver out there.
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  Sometimes there's patience needed, patience needed.
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  And and Speaking of caregivers, that's one of the hardest things
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  about Parkinson's is that you feel like you're holding people
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  back. You really do you start
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  wondering like, is my spouse getting tired of taking care of
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  me? You know, are my, are my kids
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  missing out of things because of me?
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  Do my Co workers wish they didn't have to accommodate me?
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  You know that it's overwhelming. The feelings can be just
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  completely overwhelming. But I want to tell you something
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  really important and and again, you know, listen to me please.
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  You are not a burden. You're not a burden.
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  The people in your life don't love you because of what you can
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  do or you can't do. They love you because of who you
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  are. And yes, Parkinson's does change
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  some things, but it doesn't take away from who you are.
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  It doesn't take away your worth. It's not, it doesn't, it doesn't
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  diminish why they fell in love with you in the 1st place or why
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  they want to be with you through this.
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  So if you're struggling with this, you need to start talking
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  to people. You have to.
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  I'm promising. If you're watching this right
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  now and you're going, Oh my God, that's me.
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  You need to start talking. You need to be open about how
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  you feel. Most of the time the fear of
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  being a burden isn't, is, is it's just in our heads, right?
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  It's not actually how others see us.
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  So the longer we don't talk about, we just feel bad, we feel
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  guilty, we feel grumpy, we feel cranky, we're frustrated.
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  We're, we're just feeling like I'm a burden.
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  They don't, they don't need to live like this.
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  You know, have you ever said that they don't need to be lived
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  like this. This is the, the retirement they
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  thought they were going to have. This isn't the, the life they
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  thought they were going to have. They have to have their own
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  like, you know, that type of thing.
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  That's when you need to stop and you need to talk and you need to
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  tell that person or those people who you're feeling that way
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  about. And you need to tell them
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  exactly how you're feeling. Because I promise you right now,
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  I promise you if they love you and I know they do because
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  they're with you and they're seeing this through and they're
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  walking this journey with you. As someone said in the said,
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  someone said a couple comments ago that it's, it's our journey.
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  We were diagnosed, right? Because we're in this together.
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  I guarantee you that person, that person in your life does
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  not feel like you're a burden. And guess what, If there is
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  somebody in your life that feel that's make you feel like a
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  burden. I had somebody in my life
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  previous years ago that made me feel like I was a burden, then
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  guess what? That's on them.
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  That's on them. That's not on you.
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  And you know what, if you do have people like that around,
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  you need to get away from them. I don't care what it takes you
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  get away from those negative people and people that don't,
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  don't, don't have the best for you and don't want you to be
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  your best and, and think that you're a burden.
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  You need to get around, get away from them and get around people
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  and surround you, surround yourself with people who lift
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  you up and not tear you down. And that could be that could be
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  you, might not, that could be for anybody.
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  That's just a Parkinson's thing. You need to get away from people
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  that tear you down, people that that speak poorly of you, people
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  that make fun of you, people that don't don't, you know, make
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  you feel less than. And, and there's a big
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  distinction here. And I want you to be really,
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  really careful what I say here. You would say, well, this person
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  makes me feel like I'm a burden. This person makes me feel like
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  it, like I'm less than. OK.
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  And then I would ask you if you were, if I, you and I were
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  sitting, I was coaching you right now, I'd say, OK.
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  And what did they say when you told them that?
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  And they like, I didn't tell them I just left, Huh.
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  Well, you know what? A lot of times, as I said
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  earlier, it's in our head. You think they think that, you
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  think they feel that way. You know what they have?
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  That people that are, are your loved ones that are caring for
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  you and around you. They have bad days too.
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  They have grumpy days too. They have frustrated days too.
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  And they, they are allowed to be frustrated too.
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  Gonna get an Amen to that Amen. As all the caregivers said Amen.
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  Anyway, that was that was hilarious.
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  That was actually funny. But that's what I mean.
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  So you have to give each other a grace.
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  You have to give each other a spot.
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  But you have to talk about that. And I promise you if you're
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  feeling like that person over there thinks I'm a burden.
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  OK and and and and I'll give you all the permission in the whole
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  world. If they say yes, you're a
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  burden. Yes.
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  I don't like this. Yes, I don't want to be part of
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  this. Then leave.
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  Then get out. Pack it up.
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  Let's go. Let's finish this out.
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  Let's figure this out today because I only have I have I
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  have some good years left of me and I'm not going to waste them
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  trying to prove myself that I'm good to somebody else.
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  So that's your your ticket. But I promise you the the real
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  people, the people that really love you the people that really
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  care for you are not going to tell you that you're a burden.
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  You're they're not. And at least now they know and
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  they know how you're feeling and they might be able to even
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  empathize with you even better. That's pretty heavy stuff.
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  That's why I'm talking to myself right here.
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  It's amazing. But I guess that's the thing.
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  And how do you deal with that? How.
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  Do you deal with these feelings. How do we stop how do we stop
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  this guilt this frustration. The self doubt from taking over.
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  OK, well, I'm going to tell you what helps me, OK, Number one, I
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  said it already. I always give my stuff up before
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  I get there. But you've got to give yourself
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  grace. You have to give yourself grace.
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  You didn't choose this and it's OK to need help and you need to
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  find ways to stay involved. Even if you need to adjust how
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  you do things, you still bring value to what you do.
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  Even if you have to adjust, even if they're slower, you still
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  bring value to the things that you do.
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  You bring value to your family, you bring value to your
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  friendships. You bring value to work.
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  I promise you, you do or or you wouldn't be there.
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  OK, And again, as I said, you need to talk about it.
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  Keeping these things, feels, these feelings bottled up only
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  makes them worse. It really does.
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  It makes them worse. You're going to find yourself in
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  a funk. Funks.
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  Leave the depression and you again the lag, and remember,
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  this is huge. This is the big one.
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  You need to write this one down. You are not a burden.
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  You are still you. That's the bottom line.
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  You're not a burden. You're you and you're awesome
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  and you're fantastic. You know what?
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  You're an awesome person that just happens to have Parkinson's
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  and that's it. So don't let Parkinson's define
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  you. Don't let it do that.
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  You take control of Parkinson's. Make fun of it like you don't
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  tell it. Tell it off, tell it off.
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  I tell my Parkinson's off all the time.
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  One way, you silly little buggerhead, and you stop shaking
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  right now, you goofball. You know it's not me, the
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  Parkinson's, right? And that's what I want you to
• 14:24
  remember anything today. You remember you are not a
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  burden. Now, if that resonates with you,
• 14:29
  give me like a thumbs up in the comments.
• 14:31
  You don't have to say anything, just a thumbs up just like Bam,
• 14:33
  if you want. I mean, I'd love it and I'd love
• 14:35
  to see lots of thumbs up because I want people to know.
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  I want you to know. I want your loved ones to know.
• 14:39
  I want you to tell somebody. I want you to share this with
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  somebody. They're not a burden.
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  You're not. Get that mindset out of your
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  head. I promise you your life's about
• 14:47
  to change if you can do that. It really did.
• 14:51
  So have you struggled with these feelings?
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  How do you cope? Is this something different than
• 14:55
  me? I'm not the BLM doll.
• 14:56
  You got some great ideas. This community has great ideas.
• 14:59
  I want you to be part of this community.
• 15:00
  If you're just starting first time here, you know, say hi in
• 15:03
  the comments, right? Be part of this community.
• 15:05
  I want to hear how others deal with this.
• 15:07
  How do you do it? How do you cope with those
• 15:09
  feelings of, of, of feeling like a burden or feeling guilty?
• 15:12
  I'd really, really like to know now next time on the next
• 15:16
  podcast, we're going to dive into how Parkinson's effects our
• 15:18
  relationships. So families, friendships, social
• 15:21
  life. So make sure if you're not
• 15:22
  subscribed, make sure you subscribe.
• 15:24
  And if you click the little after you subscribe, if you
• 15:26
  click the little bell, that'll give you notifications the next
• 15:29
  time that I'm live or the next time the next podcast comes out.
• 15:31
  So you'll be the first to see it.
• 15:33
  Anyway, thanks for being here and I'll see you in the next
• 15:36
  episode. Parkinson's may be part of your
• 15:41
  life, but it doesn't get to define it.
• 15:44
  Thanks for listening to Living with Parkinson's, the good, the
• 15:47
  bad, and the reality. If this episode moved you,
• 15:51
  helped you, or reminded you you're not alone.
• 15:54
  Share it with someone who needs to hear it.
• 15:56
  Want to go deeper? The Inner Circle is waiting.
• 15:59
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 16:03
  Bryce. You'll find the link in the show
• 16:05
  notes. Until next time, keep showing up
• 16:09
  and keep doing life today.