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Transcript

The Parkinson’s Symptoms Nobody Talks About (But We All Feel) · Living with Parkinson’s | Bryce Perry

• 0:01
  They told him he had five good years left.
• 0:04
  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. Have you ever felt like your
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  body has a mind of its own? Because I have.
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  I remember standing up at a restaurant and suddenly the
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  floor felt far away. I wasn't dizzy.
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  I was unplugged, like someone had hit the reset button on my
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  body and forgot to tell me. Everyone else was living up
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  their coats and chatting about desserts, and I was gripping the
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  table, trying to keep my legs from giving out.
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  I felt embarrassed. I felt confused and mostly I
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  felt alone. That was Parkinson's too, but I
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  didn't know it yet. It's called autonomic
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  dysfunction and it affects more than 80% of us live with
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  Parkinson's and yet no one talks about it.
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  I didn't hear about when I was diagnosed, I didn't read about
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  it, the pamphlets, but it showed up anyway.
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  And these symptoms, they don't shake or shuffle, they whisper,
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  but they mess with your life in big, loud ways, like sudden
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  blood pressure crashes or urgency or bladder accidents,
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  chronic Constipation, dripping sweat while everyone else is
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  freezing or freezing while everyone else wears T-shirts,
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  and yes, even intimacy issues that no one wants to admit.
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  But these symptoms are invisible, but they're very
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  real. So if you've ever found yourself
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  thinking, is this Parkinson's or is it just me, you're really not
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  alone. Share your story below, because
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  today we're shining the light on what's been hiding in the dark.
• 2:00
  Welcome to Living with Parkinson's, The Good, the Bad,
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  and the Reality. Real talk, real life, real
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  community with Bryce Perry. Let's begin.
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  Well, welcome to the channel and a big thanks, a big shout out to
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  my loyal viewers and thanks for coming back.
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  And if you're new here, my name is Bryce and this is Living with
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  Parkinson's, The Good, the Bad, and the Reality.
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  This channel is here to provide strength, hope, and support to
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  people living with Parkinson's and to caregivers who love them.
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  So I share real talk, raw stories, and sometimes a little
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  humor because we need it. And if that sounds like
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  something that kind of community that you're looking for, then
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  hit the subscribe button and come on with us.
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  We've got a lot to talk about today and and in the future.
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  But today we're talking about the Parkinson's symptoms that
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  nobody talks about, but we feel them anyway, right?
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  Autonomic symptoms affect your autonomic nervous system, the
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  part of your body that runs the behind the scenes show.
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  It keeps your heart beating and rhythm.
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  It tells your blood vessels what to do.
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  It manages your digestion, your bladder, your body temperature,
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  and even your sexual response. Basically, it's the stuff that
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  you're not supposed to think about until it stops working,
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  right? When Parkinson's effects this
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  this system, things start to fall out of sync quietly but
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  powerfully. These are the non motor symptoms
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  and they are so often overlooked.
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  For example, the orthostatic hypertension.
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  Like for me, the blood pressure drops were sneaky at first.
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  One day it was light headed, a light headed moment at the
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  grocery store and the next I'm leaning on the soup display.
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  Like I'm deeply moved by tomato bisque.
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  It's a tough one. It sneaks up on you.
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  Then there's Constipation. I spent years blaming food, you
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  know, tried fiber, water, smoothies, you name it.
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  But it wasn't just digestion, it was my, it was a slow down of my
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  entire system. And once I understood it was
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  that it was Parkinson's, then I could stop blaming myself.
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  Then there is bladder issues. Now, when I go anywhere, my
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  internal GPS isn't set to have fun, it's set to the nearest
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  bathroom. And yes, I pretended to be on
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  the phone call on a phone call just to cut in front of the just
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  to cut to the front of the public restroom lines.
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  Desperate times call for desperate measures sometimes.
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  Then there's the excessive sweating.
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  You know, have you ever sweat so much that you wonder if someone
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  will ask you if you're OK? Well, I've had stucks.
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  I have had shirts stuck to my back by 9:30 AM.
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  Meanwhile, Carmen's wrapped up in a cozy sweater, saying it's
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  kind of cold in here. Wild.
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  And then there's sexual dysfunction.
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  You know, let's talk about it because it matters.
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  And not because it's performance, but because it's
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  connection. Now, this disease messes with
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  confidence, desire, physical response.
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  It's hard to talk about it. But you're not the only one
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  navigating this, and you're not alone.
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  And just a heads up, the next episode, yeah, we're going
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  there. We're going deep and we're going
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  there. And I don't want you to miss it.
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  It's going to be one for the ages.
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  So, you know, check that out for sure.
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  Now, these symptoms, they don't just show up in your gate.
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  They don't make your handshake. They're internal, right?
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  Often embarrassing to bring up. So most of us stay silent.
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  Doctors sometimes don't ask, and we end up managing in the dark.
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  But here's the thing. These symptoms matter to your
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  quality of life. They're real, they're common,
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  and they deserve answers. So here are a few questions that
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  you might bring up at your next doctor visit.
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  Could my dizziness? Could my dizziness with standing
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  be Parkinson's related? What about this?
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  What can I do about bladder urgency or accidents?
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  Or I'm having trouble regulating my temperature?
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  Why is it my medication contributing to these symptoms?
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  You know, those are the type of questions.
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  Those are the type of things, if you're dealing with this, that
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  you need to bring up to your doctor.
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  And again, how do you remember everything when you only see
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  them once? It's every six months, if that.
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  Well, I'm glad you asked. Track your symptoms, do them for
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  a week, make sure at least a week, 2 weeks, 3 weeks in a
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  month. Write them down and make sure
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  that you paint a very clear picture of what you're going
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  through, how often you're going through and what it was like.
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  So if you're not sure what to say, you can say stuff like I've
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  been experimenting with, I've been experiencing, sorry, some
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  non motor symptoms and I think they might be connected to
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  Parkinson's. And can we talk about that?
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  That one sentence can open up a whole new level of care.
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  Trust me, you want personalized care.
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  And they, your, your health team, your doctors can't help
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  you unless you really go there. And a lot of times you have to
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  be the one to initiate it and go there.
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  So I'm going to give you a few tools and some tricks that I
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  picked up over the years, OK? Some are from experience and
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  some are just from my amazing community.
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  OK. And here's some things that will
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  help #1 compression socks, you know, they help with dizziness
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  and blood flow. I know, not the sexiest things
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  in the world to wear, but guess what?
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  If you're dealing with dizziness, try it.
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  You got to try it. OK, Another trigger tip, salt or
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  electrolyte boost, you know, with doctor's approval, they can
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  really stabilize the pressure inside, right?
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  Hydration. I know it seems simple, but
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  really it's a game changer. You have to stay hydrated.
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  You have to be that person carrying the water bottle around
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  everywhere you go. I mean it, you'd have to do it
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  and you have to get used to it. Bathroom mapping.
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  OK, so I literally plan outings around bathroom access and
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  there's no shame in that. So make sure if you're going
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  out, if you're in a new place, make sure you check where those
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  bathrooms are so that it just in case if you have to make a run,
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  you know where you're going. So again, plan ahead, think
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  ahead. It'll save those embarrassing
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  moments down the road. Here's another thing, cooling
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  towels or or sweat wicking fabrics, right?
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  They are huge for overheating. So make sure, you know, dress
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  light and and wear things that absorb the heat and the sweat
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  rather than wearing things that are going to make it come out
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  even better or bigger or stronger.
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  OK, so that's very, very important.
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  OK, how about this timed avoiding, right going before you
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  need to can help avoid urgency. OK, so time voiding is what I
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  call it. I don't know if that's a word or
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  racism, but timed voiding. So you know what, just because I
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  don't feel like, especially if I'm like, oh, if I'm travelling,
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  if I'm in the airport and I'm about to get on the plane and
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  I'm like, huh, I don't have to go to the restroom.
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  Guess what? I go to the restroom and 90
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  times out of 10, I can probably get a little out, right?
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  You can make it happen, but make sure you kind of do that go
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  before you need to. And that can help with the
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  urgency, avoiding the urgency. And then, you know, meds, like
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  there's some things like I can't spell, you know, you know me if
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  you're a regular, you know me. I can't, I cannot pronounce
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  these properly. But there's things like I think
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  it's called Loriticone, right? Or, or Amidrin, right?
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  And they can help, but only with the right specialist advice.
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  So you ask your doctor if it's things that you're trying these
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  little hacks and tricks, they're not working.
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  Ask your doctor if there's some than you can take to help with
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  it. Now, you know, these aren't
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  cures, but they do make daily life a bit easier.
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  And you know what? Sometimes that's everything.
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  Aren't we looking for our daily life to get easier?
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  I mean, don't we have enough to deal with?
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  So again, just think this through their small, easy,
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  actual quick stat stat steps, right?
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  But they're important. So important to you, living that
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  best life that you can with Parkinson's right now.
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  You might not, you might not be able to see these symptoms in
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  the mirror, but if they're if they're disrupting your life,
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  then they're worth talking about.
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  And if you've ever felt alone in this part of your Parkinson's
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  journey, I hope today reminded you that you're not.
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  You're not alone. Here's what I want you to do.
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  Comment below. What symptoms surprised you the
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  most? What helps you cope with it?
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  And what do you wish someone would have told you sooner?
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  And if you want a place to have these conversations off of
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  YouTube, right, and a little bit more private, please check out
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  the Inner Circle. It's our private community where
• 10:29
  people with Parkinson's and their caregivers can share,
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  vent, laugh, learn, and belong. It's confidential and it's
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  judgement free. And best of all, it's just real.
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  And if you ABS, you are absolutely welcome there.
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  There's a link in the description below.
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  Now listen, you're not weak for struggling with invisible
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  symptoms. You're not overreacting, you're
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  simply living with Parkinson's and doing the best that you can,
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  right? So let's keep showing up, let's
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  keep talking about the hard stuff, and let's keep doing life
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  today. Parkinson's may be part of your
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  life, but it doesn't get to define it.
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  Thanks for listening to Living with Parkinson's, the good, the
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  Bad, and the Reality. If this episode moved you,
• 11:14
  helped you, or reminded you you're not alone, share it with
• 11:18
  someone who needs to hear it. Want to go deeper?
• 11:21
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 11:25
  community, and a Direct Line to Bryce.
• 11:27
  You'll find the link in the show notes.
• 11:29
  Until next time, keep showing up and keep doing life today.