Latest / Living with Parkinson’s | Bryce Perry / The Parkinson’s Symptom That Comes and Goes (And Drives Everyone Crazy)

Transcript

The Parkinson’s Symptom That Comes and Goes (And Drives Everyone Crazy) · 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.
• 0:25
  Years into the battle, This is the truth behind the tremor.
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  Let's begin. Good morning and I'm fine.
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  Good afternoon and I need help walking.
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  Well, welcome to Parkinson's, where everyday feels like a
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  brand new game show called What's Your symptom?
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  Do you ever feel like you're stuck in a game of like symptom
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  hide and seek? You know, one hour you're moving
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  fine, the next your leg feels like it's made of concrete or
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  your hands doing the cha cha. That's the thing about
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  Parkinson's. The symptoms that come and go
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  are enough to make anyone crazy. Hey, I'm Bryce, and this is
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  living with Parkinson's. The good, the bad, and the
• 1:02
  reality. And if you're looking for real
• 1:04
  talk, hope in a community that actually gets what you're going
• 1:07
  through, hit subscribe because this channel is for you.
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  All right, off the top, let's make this real.
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  What's the one symptom that comes and goes for you or just
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  drives you or your family nuts? Drop it in the comments below.
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  You know what I read and I reply to every single one.
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  And your story helps more than you know.
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  OK, well let's get into today's topic.
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  And let's just be honest, this is one of the wildest, most
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  madding parts of Parkinson's for me.
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  The symptoms, the symptom that comes and goes is like a moving
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  target. Sometimes it's stiffness.
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  Like I wake up and I feel almost normal, then the hallway, then,
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  and then halfway through the morning my left leg decides
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  Nope, Nope, not today. And suddenly I'm dragging it
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  around like it weighs £50. You know, I've learned not to
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  fight off moments. And this is the tip for you.
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  I've learned not to fight off moments.
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  If my body's telling me it's time to take a break, then I try
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  to give myself a few minutes to sit, stretch or just breathe.
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  And sometimes that short pause is all I need to get moving
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  again. You know, a while back I had
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  plans to meet up with a friend and I felt great, right?
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  I was getting ready, I felt great.
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  I could showered, addressed. I even managed to make myself
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  look presentable, which as you know me, is an achievement on
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  its own, you know? But as soon as I got to the
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  restaurant and I stood up to greet him, it was like my body
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  just quit cooperating, you know, my foot wouldn't move and I
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  found myself clinging to the back of a chair like it was a
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  life raft. And here's another tip.
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  When when this happens, I've learned to not panic, right?
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  I just let the people around me know what's up.
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  Sometimes a quick explanation like, hey, I'm having an off
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  moment. I just need a second.
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  Can take the stress and the embarrassment out of it
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  completely. Or the hand tremor, you know,
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  sometimes it disappears for days and I start thinking maybe today
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  is the day it's gone for good. And then just as I'm pouring my
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  coffee, my hand decides it's going to do its best impression
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  of the maraca, right? And now I'm just wearing half of
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  my my coffee. So another kind of tip here,
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  like if you struggle with a tremor, try using cups with
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  lids, right? Trust me, less coffee on your
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  shirt is more coffee in your mouth.
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  And I normally I've, I've got like these, like I, I pick up or
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  I get, or I give or sometimes I'm given or I buy, you know,
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  even like McDonald's cups with the lids or if you're in Canada,
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  Tim horton's cups with the lids. And I, when I make my coffee in
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  the morning, I literally pour it into one of those cups with the
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  lids. And it just makes it so much
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  easier. And I felt more like I'm an
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  adult. You know, my wife, she was like
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  going to give me like a sippy cup almost, you know, like a, I
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  don't know, like a plastic sippy cup thing.
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  Just, you know, in the for my first coffee in the morning
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  because I'm typically was spilling it all over myself.
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  And I don't know, it just didn't feel adult enough.
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  So I kind of feel it's kind of cool if I have a coffee take out
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  mug instead and it kind of looks or coffee take out cup and it
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  looks, you know, like I bought it.
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  But regardless, you know, do the things that are going to help
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  you, right? Do those things because you
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  never know when those symptoms are going to come up and they
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  are frustrating. They just come out of the blue,
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  right? One day drinking my coffee fine,
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  the next day I can. The next day I drink my coffee
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  fine. The next day I can.
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  And I can go through three of those days in a row or three off
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  days in a row like that. And it just becomes it is what
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  it is, right? It just becomes one of those
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  things. But you know what?
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  One thing that really drives me crazy and, and you might be the
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  same way, and maybe you are. And if you are, let me know.
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  You know, if I had a dime for every time someone said, but you
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  seemed fine this morning, you know, if I had a dime for that,
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  I'd be making YouTube videos from a yacht.
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  It's confusing for family and friends.
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  I get it. I remember planning a family
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  outing one time and, you know, not, not not some epic
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  adventure, just, you know, going out for groceries.
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  And I was steady and I was moving well at home.
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  And by the time we reached the parking lot, my muscles
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  tightened up. I needed help just to get inside
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  the store. The looks I got, you know, some
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  worried, you know, some confused, made me want to, you
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  know, hand out a business card or something that said like
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  today's symptoms brought to you by Parkinson's, you know, now
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  you see them, now you don't. That's pretty cool.
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  That actually makes some good swag, like AT shirt, right?
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  You know, right, Today's symptoms brought to you by
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  Parkinson's, now you see them, now you don't.
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  Crazy, but frustrating. But you know, here's the thing.
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  I've started giving my family and my friends a quick heads up
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  before I even go out, right? Sometimes I'm like, hey, I'm
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  having a really good morning and I look great and everything's
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  going well, but things can change, right?
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  So if you see me slowing down, yeah, I might need a hand.
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  It's not a big deal, but I might need a hand.
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  And you know, again, just prepping them up, it takes the
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  pressure off me and it helps them know what to expect.
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  And it also helps them to know what I expect, right?
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  So I'm like, hey, everything looks great.
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  We're gonna have a great day today.
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  We're gonna have a great day today regardless.
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  But if all of a sudden a symptom comes in and you see me freeze
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  or I'm kind of, I can't grab something or I can't pick
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  something up, you know, I might need your help.
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  So I'm basically telling them I'm giving them permission at
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  that moment if they do see me struggling or they see something
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  going different to help me. And they just again, just
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  setting the stage makes the day easier.
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  Because you know what, it's really exhausting to have to
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  explain over and over again that, you know, Parkinson's
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  systems symptoms can switch on and off like like a light bulb,
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  right? We don't have that on and off
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  button, no warning and definitely don't, we don't have
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  a user manual, but we work just the same.
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  We're on, we're off and sometimes we don't even know
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  when that's going to happen. So it's just like I'm tired of
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  explaining it. So instead I just kind of
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  precursor it because you know what, the explaining gets old.
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  You know, honestly, there's days when I just want to put up a
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  sign and I just want to say, yes, I was fine earlier.
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  No, I don't know what happened. Yes, it could change me again in
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  10 minutes, right? There's this mix of
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  embarrassment and guilt and a a weird kind of anger, you know,
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  not at anybody, but just at the situation.
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  I remember one time I was at a family dinner and I felt so
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  awkward because I needed help getting up.
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  You know, I could see the worry on everybody's face.
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  But what do you do? What do you do?
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  I don't know, Laugh when you can and just keep moving forward.
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  That's all I can do. I can see that like, oh, boy.
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  And this is this like my parents look at me or, or my, you know,
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  my family, my kids look at me like, yeah, yeah, Dad, you know,
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  it's like, you know, hey, come on, don't worry about it, right?
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  Laugh when you can and you just keep moving forward.
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  But don't miss the moments because you're afraid of it.
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  Because at the end of the day, who cares?
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  Who really cares if it took me longer to get up from a table,
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  right? I'm not going to miss that time
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  with my family just because it's going to take me longer.
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  So, you know, think about that and you know, and, and saying
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  that though, here's another tip for you.
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  You have to give yourself grace, right?
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  I used to beat myself up for needing help, but now I try to
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  treat myself like I would a friend with patience, with a
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  sense of humor and and a reminder that nobody's perfect,
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  not even close, right? Let me say that to you one more
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  time. Nobody's perfect, not even you,
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  not even close, right? So give yourself some grace if
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  you've ever thought why boys are going out, if I just have to
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  explain myself again again, I hear you.
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  This is Parkinson's. I'm sorry I didn't sign up for
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  it. You didn't sign ever up for it.
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  Nobody signed up for this right? But we're here, right?
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  And we're figuring out together. So again, take what I can take.
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  And if if this sounds like you or maybe you've got your maybe
• 8:22
  you've got your own. My symptoms did what moment?
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  Share it in the comments and then hit subscribe too.
• 8:27
  If you haven't subscribed, come on, this channel's for you.
• 8:29
  You know what, come on, join us for this ride.
• 8:31
  You never know who might be who's going to who's joining.
• 8:34
  Thousands. We have thousands.
• 8:35
  We had 1000 people join this channel and this podcast last
• 8:38
  month. So come on for the ride.
• 8:40
  It's going to be fun. And and again in the comments,
• 8:42
  you just never know who you might help by telling your
• 8:46
  story. OK, All right, I put a call out
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  to some of my friends. OK.
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  And I asked them a little bit about this.
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  And this is what I got. And it was really cool.
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  They they delivered. So thank you to to my friends.
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  So Susan, Susan told me about making it through an entire
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  dinner party just fine, only to freeze completely in the doorway
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  while saying goodbye. Right.
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  So the whole night, I'm out, I'm finished.
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  I did it right. And then in the doorway out on
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  their way out, she froze, you know, And of course, she said
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  that's when everybody was watching, right?
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  So I asked her for a tip. Here's Susan's tip.
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  She said she always scans for sturdy chairs and walls so she
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  can use support just in case, right?
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  So when she's going to a dinner party, she always looks for the
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  the chair that's going to fit her best and maybe a wall that's
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  right near beside so she can grab onto it or, or use it for
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  help. So that was a really good tip.
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  So thanks to Susan for that. Rick.
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  Rick said he was on, he was on for a big work meeting, right?
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  But the minute that he got into the elevator to go home, he went
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  off and he could barely press the button.
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  Right? Here's his tip.
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  He got a card. He he's got a card in his wallet
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  that explains he has Parkinson's and might need help.
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  He says it saved him from a few awkward elevator moments.
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  So again, if he's kind of stuck and he's has trouble talking, he
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  just hands him the card and it says hey, and it's cool.
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  So that's kind of cool. Again, just little tips from
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  from people. And you know what, maybe you
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  have a tip. If you had a tip or something
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  you do in the comments, let's make a conversation about this.
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  Let's either help each other or help, you know, help one
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  another. And I'd love just to hear those
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  tips and what you do. Another friend of mine, Janelle,
• 10:24
  Janelle, told me that she made it to her granddaughter's dance
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  recital, sat through the whole show, and then she got stuck,
• 10:30
  literally stuck trying to stand up and leave, right?
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  And she said all all that clapping, but I couldn't even
• 10:36
  get out of my seat. You know, frustrating, right?
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  She's there, she's enjoying the moment, Everything's great.
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  She's thinking to herself, I did it.
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  She's clapping and then she couldn't get up.
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  So here's her tip. She always gives herself extra
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  time to stand up and lets her, her family know that she'll need
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  a little help even before the show ends.
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  So again, precursoring, right, Precursor in the event, hey,
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  this might happen. And if it doesn't, cool, right,
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  you know, yay celebration time. But if it does, at least they
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  know it's coming. And at least they know, hey,
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  it's OK, it's going to give a bit more time.
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  So if you recognize yourself in these stories, trust me, you're
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  not alone. You're just not.
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  And here's a bracism. So we heard from Rick and
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  Janelle and, and, but here's here's a bracism.
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  This is, you know what you keep. Everybody's asking for bracism
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  at all times. So here it is with Parkinson's.
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  The only thing predictable is that it's unpredictable.
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  The trick is learning to laugh when you can, ask for help when
• 11:27
  you need it. And remember, you're doing
• 11:30
  better than you actually think you are.
• 11:32
  So what symptom keeps you guessing?
• 11:35
  Drop in the comments because we're all in this together.
• 11:38
  And if you found this helpful, relatable or you just or Oh my
• 11:43
  God, that's so funny. I sort of was thinking of the
• 11:46
  story in my head. But if you found this helpful,
• 11:47
  relatable, or you want more real talk, hit the subscribe button.
• 11:51
  And if you want even more support and your laughs and go
• 11:53
  deeper, check out the inner circle.
• 11:56
  There's always room for one more and you can find links in the
• 11:58
  description to that. But here's one final tip for
• 12:00
  you. If your symptoms come and go and
• 12:03
  it feels like nobody gets it, keep a journal of your good
• 12:06
  right and your off times. It's helped me in spot patterns,
• 12:10
  help me spot patterns, adjust my routine, and even explain things
• 12:13
  better to my doctor and family. Remember this, if your symptoms
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  come and go and it feels like nobody gets it, that's not your
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  fault. That's just Parkinson's.
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  Unpredictable. It's frustrating and it's
• 12:24
  absolutely real. But you're not alone.
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  And together, we're stronger. All right.
• 12:29
  Thank you for being here and for showing up and for making this
• 12:31
  community the most supportive place for people living with
• 12:33
  Parkinson's on the Internet. Stay strong, right?
• 12:37
  Stay curious and keep doing life one predictable day at a time.
• 12:47
  Parkinson's may be part of your life, but it doesn't get to
• 12:50
  define it. Thanks for listening to Living
• 12:52
  with Parkinson's, The Good, the Bad, and the Reality.
• 12:57
  If this episode moved you, helped you, or reminded you
• 13:00
  you're not alone, share it with someone who needs to hear it.
• 13:04
  Want to go deeper? The Inner Circle is waiting.
• 13:07
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 13:10
  Bryce. You'll find the link in the show
• 13:12
  notes. Until next time, keep showing up
• 13:16
  and keep doing life today.