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Transcript

Parkinson’s Questions: 5 Real Answers That Every Patient Needs to Hear · Living with Parkinson’s | Bryce Perry

• 0:00
  If you've ever been sitting there with your Parkinson's,
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  confused, frustrated, and maybe even scared, just wishing you
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  could ask someone real questions, you know those ones,
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  the ones that keep you up at night, well, you're in the right
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  place. And don't you go anywhere.
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  Because today we are doing the top five questions last month in
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  the comments from YouTube that people in our community were
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  brave enough to ask, and one of them at the end.
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  Honestly, it stopped me in my tracks.
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  It's something almost nobody wants to say out loud, but we
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  all feel it. And if you stay right till the
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  end, I promise you this, at least one of these questions is
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  going to hit so close to home you'll think you asked it
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  yourself. Welcome to Living with
• 0:37
  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. Welcome back everybody, and a
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  special welcome to all the new viewers.
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  Almost 1000 of you joined us last week and 3000 over this
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  month. So I want you to know this is a
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  place where we tell the truth about Parkinson's with a little
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  humor and a whole lot of heart. And just so you know, every
• 1:03
  episode includes 2 things that matter really deeply to me
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  besides just Parkinson's. Obviously that matters a lot to
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  me, but I do a solo spotlight. For those of you doing
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  Parkinson's alone without a care partner, you need to know on
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  this channel you're seeing, you're heard and you matter
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  here. And we also have Carmen's care
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  partner corner now. That's where my wife to my
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  incredible life, she talks to care partners because care
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  partners need a voice too. And hey, before we jump any
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  further into the video, please do me a favor.
• 1:31
  If you haven't subscribed, just subscribe.
• 1:32
  Come with us. We're on a journey to change the
• 1:34
  way the world sees Parkinson's disease.
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  And you know what hit that? Like just smash that like, and
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  let's just let this get video go out to everybody out there.
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  But let's get into the very first question.
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  And here it is. This is from at CW5312.
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  And the question was, how long does levodopa usually take to
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  start working? All right, So CW, that's a great
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  question. We've talked talk a lot about
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  meds and, and leva dopa on this channel.
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  And thank you for trusting this community with your, your very
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  first days after diagnosis. Your comment is, is important to
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  us and it's important to me. And I want to make sure that
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  they get the right answer. And so here's the truth.
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  I love talking about leva Dopa. Here's the truth.
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  When you take levodopa, it has to travel through your stomach,
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  through your small intestine, into your bloodstream, and then
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  finally into the brain. It's kind of like sending a
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  letter through four different post offices.
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  You know, there's a lot of steps before that message can drive
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  all the way to the top. Now, for most people, it kicks
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  in somewhere between 20 minutes and an hour.
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  But you know, usually 30 minutes is a is a sweet spot.
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  But now here's the real life version of what I just said.
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  When you're newly diagnosed, every minute feels like 5.
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  You're watching the clock like it's like a countdown on the
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  microwave and you've got the popcorn on and you're, we want
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  it, right? I remember sitting on my couch
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  when I first started levodopa, stiff as a board, and thinking,
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  OK, is it working? Am I broken?
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  What if it doesn't work for me? And then slowly, and I do mean
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  slowly, things started to loosen.
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  But it's not perfect, It's not magic, but it's enough to let us
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  breathe again. NCWI want you to hear this.
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  Your body is learning something brand new.
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  You're not late, you're not behind, and you're not failing.
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  That's kind of a good place to bring in a bit of a solo
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  spotlight here. You know, those of you doing
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  Parkinson's on your own, this one is for you.
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  When you don't have someone watching your off times or
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  asking, hey, are your meds kicking in yet or did you take
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  your meds? It can feel like the whole load
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  is on your shoulders because it really is.
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  But if you're solo today, I want you to drop a a solo strong into
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  the comments because people need to know that you're doing this
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  and people can do it. That is doable.
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  It's harder, but it's doable. OK, let's move on to one.
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  That's a big myth. A lot of people are confused
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  about this one. This is our question #2 and it
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  came from at Mary Kuhn at 3339. And the question is, is DBS only
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  helpful when your meds stop working?
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  Wow, Mary, that's a great question.
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  Thank you so much for asking. That's a question that a lot of
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  people ask. It's on a lot of people's minds.
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  So here's the truth. DBS is not a last resort.
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  It's not something you wait for until everything else falls
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  apart. And it's definitely not
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  something doctors only use when meds stop working.
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  Think of DBS like noise cancelling headphones for your
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  brain. When your brain circuits are
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  firing too loud or too fast, DBS smooths them out, right?
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  It doesn't add dopamine, but it stabilizes the chaos.
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  And here's the part that most people don't know.
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  DBS actually works best when your meds are still working,
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  right? They just don't work
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  consistently. So that's the sweet spot.
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  Not too early and not too late. And yeah, you know what?
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  Some people think that DBS is like plugging your brain into
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  electrical outlet. If only, right?
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  Hey Carmen, can you charge my tremors up to about 80% before
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  dinner? No, it's not electricity power
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  in your brain. It's actually calming the noise
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  that the disease creates. Now if this myths confused you
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  to drop a drop a hey DBS is confusing in the comments.
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  Just so Mary knows. Mary knows she's not alone.
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  OK, now let's look at a symptom that made me laugh when I first
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  read it, and only because I've asked myself this same thing
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  over and over again. And this came from Splashes and
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  Eight. The question was anybody else
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  getting hives all the time? Is it the meds?
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  Thank you Splash and Eight for your comment that's a good one.
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  Is anybody is everybody getting hives and I love this because
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  every single person with Parkinson's has had that moment
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  where we go is this Parkinson's? Is it aging?
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  Is it my meds? Is it because it because I ate
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  breakfast too late? Did I eat a weird sandwich?
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  What's going on? We've all been there and
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  Parkinson's should honestly come with a like a bingo card right,
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  because you just never know. But let me give you some science
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  in some pure, in some English, hives aren't common, aren't
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  common PD symptom. But your medications, especially
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  new meds or dose changes can trigger allergic reactions.
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  And Parkinson's itself puts your nervous system and your immune
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  system on high alert. Like so sometimes one of them
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  overreacts and the other one goes like, Oh yeah, let me
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  overreact more, you know? And your skin responds like it's
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  like in the middle saying it's like auditioning for a drama
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  series. It's like, oh, you guys are too
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  much. I'm just going to break out in
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  hives right now. You know, I once, I remember I
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  once had this like really weird rash on my arm and I thought, oh
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  great, Parkinson's moved to my elbow.
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  Turns out it was laundry detergent.
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  So if you've ever blamed Parkinson's for something
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  completely unrelated, drop a a smiley emoji in the comments and
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  let Splash Nate know that they don't have to feel alone.
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  But that's definitely a question that we all go through.
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  OK, from hives to bright lights question #4 came from at my
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  PlayStation 1993. And the question was, does light
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  therapy help during off times? Well, my PlayStation 1993, thank
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  you for this one. That's a great question.
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  I love your username, by the way.
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  But light therapy is one of those things that everybody
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  hears about but nobody really understands.
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  Now here's the science. This is the science made Bryce
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  easy version. Light therapy helps regulate
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  your body clock. OK it's called your like your
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  circadian rhythm. Better sleep, more stable mood,
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  more predictable on times. Does it stop an off moment in
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  the middle of it? No, but it can make those off
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  moments less intense over time. And that's that's a positive.
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  I always would take that as a positive.
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  You know, I actually bought one of those light alarm clocks
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  right where the light comes on and it lights up.
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  And at first I'm like, OK, Bryce, are you now?
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  What are you trying to do? You're a houseplant.
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  I'm going to sit there in front of it.
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  It's like I was photosynthesizing myself, you
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  know. But you know what, my sleep did
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  improve And, and when my sleep improves, everything improves.
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  So that's something that I think that, you know, we all need to
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  try and everybody needs to try it out for themselves.
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  It might work for some, it might not work for others, but for me,
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  I do realize I, I, I get a better sleep, I wake up better
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  in a better mood. So that's good enough for me.
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  All right. And now this last question is
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  one that hit me hard. And not because it's
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  complicated, but it's emotional. OK.
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  And question #5 is this. And it came from at Eating for
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  Health XLAPR. And the question was, how can I
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  help someone who won't ask for help?
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  They always say they're just fine.
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  Well, adding at eating health. Thank you for asking this
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  comment or this question. You know, I chose this final
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  question because it's so real. And most people with Parkinson's
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  do not say I'm fine because they're fine.
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  We say it because we're scared of being a burden or we don't
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  want to look weak or we're trying desperately to hold on to
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  a little bit of an independence. And that's why this next part is
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  so important. And that is Carmen's care
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  partner corner. I thought this was right up her
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  alley. I gave her this question and
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  here is what Carmen wrote. My wife wrote for me to say to
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  you, to the care partners or to you.
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  When someone loves you, says I'm fine, it doesn't mean you're not
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  needed. It means they're scared you'll
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  see their struggle they're trying so hard to hide.
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  So instead of asking, do you need help, try offering one
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  small specific thing. Want me to steady your hand?
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  Want me to walk you while you take while your meds kick in?
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  Want me to carry your bag so you can stay balanced?
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  And when we do and when they do accept help, even if it's a tiny
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  bit, celebrate it because that moment is trust.
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  That's a good one, Carmen. That's awesome.
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  And guess what? I almost stumbled there because
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  I saw, you know, something coming up here.
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  But amazing those are so those are the top five questions that
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  we had last month. And they're powerful.
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  They really are. And if you've got your own
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  questions, drop it below because I am looking for questions that
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  I always want to put in to the next ones.
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  And if any of these answers hit home for you today, let let the
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  person know who asked it. Just type in the comments you
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  can ask or you know, put their screen name in there and say,
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  great question, I'm here for you.
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  I thought of that too. It would actually help them feel
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  more inclusive to the to the community and help them when
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  they're needed. But guess what I noticed here?
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  Carmen has a Carmenism for you today.
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  And here is what Carmen's Carmenism of the day is for you.
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  And she says this with Parkinson's.
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  Saying I'm fine is really just code for I'm doing my best not
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  to scare you or myself. That's pretty good.
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  Not bad. But as you know, I'm going to
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  bring the heat. You bring you bring one.
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  I'm bringing the heat. Here we go.
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  This is your. This is your.
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  This is your bracism of the episode with Parkinson's.
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  Half the battle is understanding what's happening.
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  The other half is stopping yourself from Googling it at
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  3:00 AM. And that's the battle, all
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  right, there you go. That is your Bryceism of the
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  day. If you like that one, hammer
• 11:24
  down, give me a heart, give me a like.
• 11:26
  And before you go, if you want deeper support and you want to
• 11:28
  be part of that live virtual studio audience the next couple
• 11:31
  weeks here for the Beach Band interview, come join the inner
• 11:34
  circle. The link is in the description
• 11:36
  below. And if you're newly diagnosed or
• 11:39
  you're feeling overwhelmed, please check out the January
• 11:42
  boot camp. You know, boot camp.
• 11:43
  I put it out a six week boot camp.
• 11:45
  It's everything I wish I had in my first five years after being
• 11:49
  diagnosed. It's a six week boot camp with
• 11:51
  me and we it's open. We're going to start again in
• 11:54
  January. So there is just a so we can get
• 11:56
  involved. Save your seat.
• 11:57
  The last one sold out really fast.
• 11:59
  We had 25 people. They're actually in it right
• 12:01
  now. It's amazing just seeing the
• 12:02
  growth and what's going on in the in those in those boot
• 12:05
  camps. And so come join six weeks with
• 12:07
  me. It's just not it's not too
• 12:08
  intensive. It's, it's, it's, but it's well
• 12:10
  spaced out. But I, I promise you, if you
• 12:12
  have questions, all these questions you're hearing right
• 12:14
  now, I answer them in the boot camp and why?
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  Because I had the same questions.
• 12:18
  So just come hanging with me for a couple weeks to get free inner
• 12:22
  circle entrance. You come in the inner circle,
• 12:24
  come hang out and the boot camp is awesome.
• 12:27
  So we are going to start reserving your seat now.
• 12:30
  And once they're full, they're full.
• 12:32
  And there's just a small deposit you can put down on it today to
• 12:36
  make sure that we get to hang out in January.
• 12:37
  And because you know what, I think January is going to be
• 12:40
  your year. It really is.
• 12:43
  And with that, you know what time it is until next time.
• 12:47
  I want you to keep showing up. I want you to keep being real,
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  keep asking questions. And whatever you do, you just
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  keep doing life and you keep doing it today.
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  And I'll see you on the next episode.
• 13:01
  Parkinson's may be part of your life, but it doesn't get to
• 13:03
  define it. Thanks for listening to Living
• 13:06
  with Parkinson's, the good, the bad, and the reality.
• 13:10
  If this episode moved you, helped you, or reminded you
• 13:14
  you're not alone. Share it with someone who needs
• 13:16
  to hear it. Want to go deeper?
• 13:19
  The inner server was waiting Monthly Zoom calls, 24/7
• 13:22
  community, and a Direct Line to Bryce.
• 13:25
  You'll find the link in the show notes.
• 13:27
  Until next time, keep showing up and keep doing life today.