Latest / Living with Parkinson’s | Bryce Perry / 5 Real Parkinson’s Questions From My Community Part 1

Transcript

5 Real Parkinson’s Questions From My Community Part 1 · Living with Parkinson’s | Bryce Perry

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  Have you ever wondered how much bacon a person with Parkinson's
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  can give up before life loses all meaning?
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  Or maybe how to deal with stiffness that just won't let
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  go? Well, you're in the right place,
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  because today we're dealing with something that I love.
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  I love answering your real questions straight from the
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  comments, and trust me, some of these are going to surprise you.
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  But stick around to the very end, because I've got a Bryce
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  ISM that you don't want to miss. Welcome to Living with
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  Parkinson's, the good, the bad, and the reality.
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  Real talk, real life, real community with Bryce Perry.
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  Let's begin. All right, well, welcome to the
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  channel. I want to thank my loyal viewers
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  for always coming back and sticking with me.
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  And if you're new here, my name is Bryce, and this is living
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  with Parkinson's. The good, the bad, and the
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  reality. Now, this channel is all about
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  providing strength, hope, and support to individuals living
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  with Parkinson's and their caregivers.
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  And we share motivational stories, tips and insights to
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  help you navigate life with Parkinson's.
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  If you're looking for this type of content, make sure to
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  subscribe. And guess what today's program
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  is your questions, my answers, real Parkinson's Q&A, and I want
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  to dive right in. I love this episode.
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  We do this once a month. And these questions are taken
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  right from the last four weeks since the last last time we did
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  this in the right from the comments in YouTube and offer
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  podcasts. So anyway, let's kick things off
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  with a gem. And this is from Mary Kane 5668,
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  who wrote You gave up bacon? Are you serious?
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  Well, Mary, great question. And let me clear this up right
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  away. I didn't actually give up bacon.
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  If Parkinson's ever tries to take my bacon away, we're going
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  to have a real fight on our hands.
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  But here's the truth. All of us have that one thing
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  that we don't want to give up, don't we?
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  You know, for some it's bacon and for some it's coffee.
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  For some it's chocolate or wine. Parkinson's is really is already
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  stealing enough from us. So I'm a believer in holding on
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  to those little joys that keep life delicious, like peanut
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  M&M's. Moderation.
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  Sure. Total sacrifice.
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  Not if I can help it. Hey, how about this in the
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  comments? What's one thing that you would
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  never give up? Never.
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  OK, here's a bright season for that one with Parkinson's.
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  If you have to choose between joy and perfection, choose joy.
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  Perfection won't keep you warm at night, but joy just might.
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  OK, great question. Moving on.
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  This one comes from Jimmy Guyton.
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  Jimmy Guyton, 7882. And he asked this, what is the
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  worst stiffness that you've had? Your leg, you had in your legs
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  and your feet. OK, well, thanks for this one,
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  Jimmy. Well, see, stiffness is my
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  biggest symptom, so I feel you on this one.
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  The worst I've had, honestly, it was one night.
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  I think I woke up about two or 3:00 in the morning and it felt
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  like my calves were made of concrete.
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  I remember I swung my legs out of bed and they just didn't
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  move. And here's the funny part, I
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  actually tried negotiating with them.
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  I'm sitting there in the dark whispering come on guys, just 10
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  steps to the bathroom. It didn't work.
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  But here's one that does help me.
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  Stretching before bed, a warm shower and some magnesium spray
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  on the legs. That combo at least makes me
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  feel like I'm have a fighting chance.
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  So that was an excellent question.
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  Here's a racism with that one. With Parkinson's, sometimes you
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  have to sweet talk your own legs just to get them on your side.
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  Been there, done that. How about me in the comments, if
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  that's been you, me in the comments.
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  All right, moving right along. This next question comes from
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  Susan M444 and she asked this. Do you ever feel like your meds
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  wear off at the worst possible times, Susan?
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  Absolutely. And I swear Parkinson's has a
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  sense of humor about it. Right.
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  My meds never went off when I'm just alone watching TV.
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  No, no, no, no, no. They wait until I'm in a grocery
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  store line or sitting in a meeting.
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  I remember one time I was at a birthday party, and just as
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  everybody was singing, like, just like, you know, happy
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  birthday, my body froze up like a statue.
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  You know, there I was looking like this wax figure while
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  people are all belting out happy birthday.
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  But what helps me is keeping a rescue dose handy and always
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  being honest with people. Rescue dose of what you ask?
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  Well, of my levodopa and my pills.
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  So I always have some in almost every pocket just in case.
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  And you know, and again, being honest with people, sometimes
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  I'll say, hey, meds were meds just wore off.
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  Give me a second. And guess what?
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  Those people that matter, they'll understand that.
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  Don't be afraid to speak up and tell people what's going on.
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  I promise you they will surprise you.
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  OK? I'm racism for that one.
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  OK, Parkinson's has terrible timing, but you get to decide if
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  it ruins the moment. Parkinson's has terrible timing,
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  but you get to decide if it ruins the moment.
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  All right, that was a really, really great question.
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  And let's wrap up this first episode with one more.
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  And this one is from Clive Adams 4538.
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  And he asked this, do you ever get embarrassed by the facial
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  masking? Well, Clive, I always love your
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  questions in the comments and thank you for being so real
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  about, about everything. But yes, truthfully, it's one of
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  the hardest things for me, right?
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  I, in Group photos, I look like I, I look back at these photos,
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  right? And I see myself with like no
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  expression. My mouth's half open and well,
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  everybody else is smiling. I'm just sitting there and I'm
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  just like that. And you know, I don't know, I
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  talk to people about it and they say, I don't see it.
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  You know, I'll say, you know, I'm looking at these pictures
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  and oh, please don't take a picture.
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  And you know, if you got any pictures, go back and look at
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  them again, because I, I just don't like, you know, these
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  group shots and, and they always tell me they don't see it.
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  And I don't know if that's true or not because I then I see it.
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  Don't you like, if you, when you start getting that facial
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  masking and you know, you know, how about in the comments, if
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  you do you see it or do other people say they don't see it?
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  I because I do. And it does bother me.
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  It really absolutely bothers me. It's one of those things, I
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  don't know if I'm vain, maybe I'm a little vain.
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  Maybe I'm a little, you know, maybe some people are saying it
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  really doesn't matter to them. And and that's great.
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  I hope. I wish I felt that way and I
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  don't. I know I see it and it bothers
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  me and that's the bottom line. And, you know, it's tough
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  sometimes. But here's the thing that I've
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  learned. OK, so people who love you, they
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  don't need your face to tell them how you feel.
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  OK, so I'm almost kind of worrying like, what do people
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  think? What are they thinking of?
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  What do they feel that I'm thinking right now?
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  But people that love you don't need your face to tell you how
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  you feel. They already know it.
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  And if I remind myself that even if Parkinson's takes away my
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  smile, it can't take away my joy unless I let it, right?
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  Parkinson's cannot take your joy unless you let it take your joy.
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  And you have to change that mindset.
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  And do I have a Parkinson's for that one?
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  Well, guess what? I kind of do.
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  And this is a tough one for me again.
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  But this is after much contemplation.
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  This is what I came up with with Parkinson's, sometimes your face
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  forgets to smile, but that just means that your heart has to
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  smile louder. I think that's a pretty good
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  one. And I think that's a good place
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  to pause, right? We've got, I've got way more
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  questions. I mean, I had to pick the best
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  10, but I've got way more real questions lined up for Part 2.
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  That one really hit me actually. And so I appreciate that.
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  But you know, I'm going to give you 1.
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  There's there that included. There's one coming up in Part 2
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  and it's going to come right up after this.
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  So don't you know, keep hang on here.
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  But it made me laugh out loud the first time I read it so
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  much. So you don't want to miss that
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  one. But before you go, if you've got
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  a burning question about Parkinson's or about me, drop it
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  in the comments. And who knows, it might show up
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  on the next month's Q&A. But guess what?
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  I want to thank you so much for watching.
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  And don't forget to subscribe. And I'll see you in Part 2.
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  And I think you can probably see it if Parkinson's or sorry,
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  Parkinson's, if YouTube's doing its thing, I think you can
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  probably see it right about here or here.
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  One of these two. Just click there.
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  Come on with me. Let's go to Part 2.
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  Parkinson's may be part of your life, but it doesn't get to
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  define it. Thanks for listening to Living
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  with Parkinson's, the good, the bad, and the reality.
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  If this episode moved you, helped you, or reminded you
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  you're not alone. Share it with someone who needs
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  to hear it. Want to go deeper?
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  The Inner Circle is waiting. Monthly Zoom calls, 24/7
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  community, and a Direct Line to Bryce.
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  You'll find the link in the show notes.
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  Until next time, keep showing up and keep doing life today.