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The Hidden Parkinson’s Pain Nobody Talks About · Living with Parkinson’s | Bryce Perry

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  You ever have that pain that just doesn't make sense?
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  You know, one day it's your back and then it's your calves, and
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  then your hands feel like somebody lit a match under the
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  skin? Well, that's Parkinson's pain.
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  And here's the kicker. My doctor never mentioned it to
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  me. Not once.
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  Hey friends, I'm Bryce, and this is living with Parkinson's.
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  The good, the bad, and the reality.
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  Now, I was diagnosed with Parkinson's at the age of 40.
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  So I've been living with this now for almost 15 years.
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  And so when I talk about the pain, stiffness and all the
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  hidden stuff, I'm not guessing. I'm living it every day.
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  So if you're new here, welcome. And if you're part of the inner
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  circle or a member of the channel, you, you, you already
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  know you are the heartbeat of this community.
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  And I'm so thankful for all of you.
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  Now here on this channel, I share the real life side of
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  Parkinson's, the raw, the funny, the frustrating, and the hacks
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  that actually help. So if you're looking for this
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  kind of content, then hit subscribe because you don't have
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  to do Parkinson's alone and you don't have to do it alone
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  anymore. Now stick with me till the very
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  end of this video because I'm going to share the biggest tip
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  that I used to that I used to deal with pain.
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  It's simple, it's practical, and it saved me more times than I
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  can count. 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. You know, for me, pain often
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  shows up in my hands. For example, if I mow the grass,
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  I know what's coming the next day.
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  My hands feel swollen, they feel like they're burning, they're
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  sore. There's like little fires like
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  are lighting up under my skin. It makes even the simplest
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  things like opening a jar or typing feel impossible.
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  And let me throw this at you. If you've ever had pain like
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  this, let me know in the comments.
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  What's the weirdest, most surprising pain with Parkinson's
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  story you have. I read them all and I'm and it
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  might help somebody else by sharing.
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  Now, that's just one example because Parkinson's pain isn't a
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  single thing. It comes in many different
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  forms. You know, first there's let's
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  talk about the types of different pains, though.
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  First up, there's stiffness pain.
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  You know, this one feels like my muscles are wrapped in duct
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  tape. It's not sharp.
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  It's more of a constant grinding ache and it's relentless.
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  If you suffer on that, let me know that in the comments.
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  And then you know what, there's joint pain because of bad
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  posture and rigidity. My hips, my knees, my shoulders,
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  they all start complaining, right?
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  They they pick up the slack and I'm sure they make me know that
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  they're doing more of the work. How about that you suffer with
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  that, Let me know. And those kind of comments as
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  well. And next is dystonia pain.
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  Now that's the that's when the curls cramp and the curl in
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  directions that they're not meant to.
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  You know, when it happens, I look like I'm doing some new
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  form of interpretive dance, which is only funny if you're
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  watching and not if you're me. I hate that.
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  And I've been dealing with that since before I got diagnosed
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  just before. How about you?
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  Do you suffer from that? Let's let me hear that in the
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  comments as well. And then there's the neuropathic
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  pain. Now this is the burning,
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  tingling, electric shock kind of stuff.
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  Feels like my body just downloaded a virus instead of an
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  update. Totally unpredictable and drives
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  me insane. Drives me crazy.
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  If you deal with that in the comments let me know.
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  And finally, medication related pain.
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  Now when my meds wear off, sometimes the pain comes rushing
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  back like a wave. You know?
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  One minute you're completely fine and the next you're sore
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  from head to toe. So yeah, pain shows up in a lot
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  of ways. But the worst part?
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  Hardly anybody talks about it. You know, doctors are busy
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  juggling tremors, stiffness, medication schedule, side
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  effects, and I believe in the just pain just gets shoved to
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  the bottom of the list. But here's the truth.
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  Some days pain is the most disabling part of Parkinson's.
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  And because it's barely mentioned, it blindsides people.
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  You end up thinking, did I miss the memo?
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  Was there a page in this Parkinson's manual that I didn't
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  get? Did they leave this part out?
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  What's going on here? But here's the good news.
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  While we can't always stop the pain, there are things we can do
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  to manage it better. So let me walk you through a
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  few. Now, these are what I use for my
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  coping strategies. OK.
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  And the first one is this. You have to pace yourself.
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  Parkinson's pain loves to sneak up when I push too hard, so I've
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  learned to build in micro brakes before it hits.
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  For example, if I'm doing yard work, I'll set a timer to stop
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  every 20 minutes. If I wait until my hands are
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  like screaming at me, it's way too late.
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  So think about what you do. What bothers you?
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  Well, if you know what's going to happen, do it in blocks.
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  Break it up. Break it up in blocks and start
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  breaking before it starts hurting.
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  Another big 1 is a gentle massage.
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  Now I don't mean the fancy spa treatment, although that would
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  be cool. But I roll it.
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  I roll a tennis ball around under my hands or or use a
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  stress ball to loosen things up. It hurts a bit while I'm doing
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  it. It's like pushes on it, but but
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  the next day my hand thanks me that I did it before I started.
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  So again, it's like, like they say, stretch before you move,
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  right? Same idea.
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  Whatever it is that you're dealing with where that pain is,
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  If it's a pain in your back, stretch that back up before you
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  do like the housework that's going to hurt or it's in your
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  hands like me. Do some massage it, get it
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  ready. OK, Now the third one is the is
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  the contrast to heat and cold. Now warm water relaxes the
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  muscles and then a quick dip, quick dip in cool water helps
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  with swelling. Now I know it sounds odd, but it
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  works. It's like tricking my nerves
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  into calming down. It's wild.
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  Just try it. Warm them up, cool them down,
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  warm them up, cool them down. It just, it works for me and
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  it's worked for many others that I've talked to.
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  And the fourth thing is breathing.
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  You know, this one might sound soft, but it's real stress
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  cranks up pain if I stop. If I stop and I do so do 5 deep
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  belly breaths, it lowers the tension and the pain feels less
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  sharp. It's kind of like again, hitting
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  that reset button. OK, and finally, here's the one
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  I teased at the start. The biggest tip that helped me
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  with pain, Well, it's using adaptive tools now.
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  I used to think that I just had to push through pain, but I've
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  learned to work smarter. Added gloves for mowing the
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  lawn, right? Irrigamic, Irrigonic.
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  I can never say these words. Irrigonic handles or tools,
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  right? Even swapping regular utensils
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  for thicker grips now. These little changes, they don't
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  cure the pain, but they stop it from getting worse and they keep
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  me moving now. For me, gloves make all the
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  difference. If I do yard work without them,
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  my hands pay for it the next day with them.
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  Pains manageable. It's not glamorous, not sexy,
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  but it keeps me in the game. Now what about the science
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  behind this? Well, here's the science in a
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  nutshell. The dopamine.
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  Dopamine doesn't just control movement and also plays a role
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  in how the brain processes pain. When dopamine is low, it's like
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  someone turned up the pain dial. Add stress and poor sleep and
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  it's cranked even higher. And that's why these little
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  strategies work. They don't fix Parkinson's, but
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  they lower the load on the system that's already
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  overworked. And that leads me directly into
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  today's bright system. With Parkinson's, pain doesn't
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  mean you're weak. It means your body's fighting
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  harder than most people will ever know.
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  And that's how I remind myself on those tough days.
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  Yeah, it hurts. And I'm still here and I'm still
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  fighting, and I'm still doing life today, every day.
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  So that's the hidden Parkinson's pain nobody talks about.
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  It's frustrating. It blindsides you and it hurts,
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  but it doesn't define you. And because we've got
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  strategies, we've got humor, and we've got resilience, we can
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  win. Now I want to hear from you.
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  Have you experienced pain with Parkinson's and how does it show
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  up for you? Drop it in the comments.
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  Remember, I read everyone, I reply to everyone and your story
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  might just help somebody else. And if you want to go deeper
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  beyond these videos, check out the inner circle.
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  We hang out live once a month and we keep the conversation
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  going every single day in there. It's awesome.
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  It's a place for caregivers and you and you deserve to be there.
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  And we're waiting for you. So the links in the description
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  below, no pressure. I love you all and you remember
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  one thing. Until next time.
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  I want you to keep showing up. I want you to keep being real
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  and I want you to keep doing life today.
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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.