Latest / Living with Parkinson’s | Bryce Perry / Navigating Parkinson’s: Real Stories, Real Solutions

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Navigating Parkinson’s: Real Stories, Real Solutions · Living with Parkinson’s | Bryce Perry

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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.
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Years into the battle, This is the truth behind the tremor.
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Let's begin you. Ever had one of those days where
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Parkinson's throws you a curveball and the only option is
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to laugh or lose your mind? Well, I sure have, and today I'm
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going to dive into the real raw stories and the creative
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solutions that actually get us through the tough days.
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From the epic fails to the surprising winds, you'll hear
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moments from my own life and from people just like you.
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So stick around because what you hear today could change your
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whole week. Well, welcome back to the
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channel, everyone. I want to thank my loyal viewers
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for coming back. And if you're new here, I'm
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Bryce and this is living with Parkinson's, the good, the bad,
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and the reality. And here it's all about real
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talk, real support, and yes, a good dose of laughter about life
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with Parkinson's. This channel is a place for
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anyone, whether you're living with Parkinson's, you're caring
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for somebody, or you just want to understand what it's really
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like. And remember, your stories are
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the heart of this community. So I just, I encourage you to
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jump in when you can and, and let's just jump into this one
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today. I want to start with a classic
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Parkinson's moment for my own life.
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OK, so picture this. It's a regular morning.
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I'm feeling pretty confident. I got my jacket on, keys in
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hand, and I remembered my phone. Victory music is in my head.
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And then I realized I forgot my wallet.
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So I go to get back. I go back to get it, and as soon
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as I bend down, boom, Tremor City.
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I dropped the wallet, I dropped the keys, and my phone bounces
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under the couch just for good measure.
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And that's when, in my head, I cue the circus music.
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But here's the truth. Five years ago, this would have
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ruined my day. I might have skipped going out.
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And now I just laugh. I snap a mental picture, and I
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keep rolling. Because Parkinson's forces you
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to become a professional at rolling with the punches.
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And who can relate to that, right?
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But honestly, it's not just about the clumsy moments.
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Sometimes Parkinson's delivers little victories that feel huge.
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Like last month, I managed to button a stubborn shirt all by
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myself for the first time in ages.
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It took about four minutes and a fair bit of my of mumbling under
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my breath and a few probably BB beep words, but when I finally
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did it, I practically gave myself a standing ovation.
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It's the little things, right? It's these little things that we
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can, we can kind of celebrate to make ourselves feel better.
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And I'll never forget the time at a grocery store when my hand
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was shaking so much that I could barely hold my debit card and
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the cashier asked if I was nervous.
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And I just smiled and said, Nope, I'm just, Nope.
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Just my Parkinson's getting a head start on the weekend.
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And instead of embarrassment, we had a real conversation about
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the disease. And by the end, the person
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behind me in line said thanks for educating us.
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Sometimes when you're open, you give others permission to be
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open too. And that was a real lesson to
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me. And it was a real, it was a real
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aha moment for me. Now, it's not just my stories
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that matter. Let's hear from some of you.
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So I pulled some of real stories, you know, out of the
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comments and DMS and, and I'm going to share a couple of them
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'cause I think they're, they're amazing.
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So Janet from Ontario shared this.
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Last week. I tried to make tea.
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By the time the kettle boiled, I'd already forgotten why I was
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in the kitchen twice. Eventually I made coffee
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instead. Guess you just go with the flow.
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And you know what, Janet? You nailed it.
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That's Parkinson's humor at the best, and that's probably your
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mantra for a living with Parkinson's.
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Sometimes we just go with the flow or you not just sometimes
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you just have to go with the flow.
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So thanks, Janet, I really appreciate that.
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And how about this one, this one from Sarah in BC?
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My biggest win last week is I made it through a yoga class
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without falling. And when I did wobble, the group
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joined in for balance practice. I've never felt so included.
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I love this. Sometimes it's not just about
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staying upright, right? It's about staying connected.
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And I just love that story. So thank you.
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Thank you, thank you so much. So much There.
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That was that was encouraging to me.
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How about Mike from Iowa? I tried Bryce's sticky note
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hack, but my dog ate three of them and now he's the most
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organized pup in the neighborhood.
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MM. If your dog starts taking your
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meds on time, then you need to let us know.
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Meds on time, every time, even for the dog.
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So thanks, Mike, I got a real kick out of that.
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That was awesome. And you know, here's one from
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Lisa in Florida. My grandkids help me set
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reminders on my phone. Except now.
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Except now my phone tells me to dance like no one's watching at
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3:00 PM every day. Who needs medication when you've
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got grandkids? What an incredible story.
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I mean, it's funny, but that's awesome, right?
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It's just totally awesome. And if you've got a, a story,
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you know, funny, frustrating or inspiring, drop it in the
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comments below. You never know who you're going
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to encourage today. You just never know.
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OK, now let's get practical. Now let's talk practical
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solutions. Like over the years, I've
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collected a whole tool kit, right?
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Some ideas from doctors and some from my friends and some from
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good old fashioned trial and error.
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And let's break it down, OK? And this is just some things
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that that you need to really think about.
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One of the things that I do is #1 this is a sticky note system.
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And we heard about, I think it was Mike, was it Mike's dog
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that, that loves the sticky note system?
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And, and, but let's break what down the sticky breakdown, what
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the sticky system is. And I have more sticky notes
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than a stationary store, to be honest.
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So here's how you use them. Red sticky notes, medication
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reminders always on the fridge or the coffee maker.
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Blue sticky notes appointments or things that I need to tell
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Carmen. And yellow sticky notes are pep
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talks to myself. Like you've got this.
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Or remember, coffee first, question later.
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And if you run out of sticky notes, cereal boxes, napkins,
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and even bathroom mirror will do.
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And I apologize to Carmen in advance for all of those things
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that I write on or do. True story because once Carmen
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found a note on her shampoo bottle.
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Don't forget to hug Bryce today because you know Bryce has
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always got his cuteness rolling in heisting.
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But anyway, and another the other tip of the other set of
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tips and things that I'm going to talk to you about and
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remember is alarms. Alarms for everything, meds,
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stretching, water, you name it. My tip, assign each alarm a
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different sound. So when I have the Tiger plays
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at noon, I know it's time for my midday pill.
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Not a workout for tech folks, tech folks, folks for tech
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folks, you'd like to maybe try the there's an app called
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Metasafe. And this isn't sponsored a video
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or anything, but it tracks doses and it gives nudges if you miss
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and it even lets you, your loved ones know if you forget.
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And you can try that. I'm not into that, but because I
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don't like my loved ones to get nudges every time I miss because
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they're, Oh my God, they think worry too much about it.
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But anyway, if you if you if that's something you need, make
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sure you check it out. And how about for low tech days?
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All right, how about this? Use a cheap digital kitchen
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timer or even a friendly neighbor as a reminder buddy.
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You know, just whatever it is you have or use, just put it to
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your, you know to use it to your advantage, right?
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Cheap little kitchen digital timers, easy, perfect, amazing.
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And then don't forget also the the pill timer cat bottle or
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pill timer bottle cap. I always mess that up.
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And again, I have some links in the descriptions, the
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descriptions below to for all the little things I use and feel
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free to to help yourself and see what I use.
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Anyway, here's a big one, the five minute reset rule.
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OK, so this is what I do when I feel overwhelmed or frustrated
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or like I'm just about to lose it.
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Here's my 51 ready number one. I pause.
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OK, I sit down. I take 5 deep breaths and then I
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remind myself reset is not retreat right?
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It's regroup and get back in the game.
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And sometimes I literally say out loud, OK, body, we're doing
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this together, whether you like it or not, we're doing this
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together. And I just kind of take that
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moment to reset. And that's 5 minute reset rule.
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And it's very important to sit down, pull yourself out of what
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you're into. So, and again, if you're at the
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office or you're somewhere like that, get out of the stressors
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that are around you. So if you have to go sit down in
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the, in the living room because something's going on in the
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bedroom, or if you're at work and you have to go sit down in
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another office or whatever, whatever it is, kind of move
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away from what's stressing you out and what's feeling making
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you feel overwhelmed. And just take that 5 minutes and
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breathe. It's like a meditation, like
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breathe, think it through, you know, remind yourself this is
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just a minute in time. It's not, it's not, it's not the
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end of the world, OK? It's not the end of the world.
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And just try that. So I, I, I challenge you to try
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that 5 minute, that 5 minute, you know, rule.
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OK, here's another thing that I've seen a lot of people use is
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a magnetic whiteboard calendar, right?
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So if sticky notes aren't your thing, a magnetic whiteboard on
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the fridge works wonders, right? I've seen people use it for
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daily routine routines like their meds at 7, three and 11.
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They can write it down and appointments or what's for
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dinner. And I would love that one, you
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know, so I don't have to keep asking Carmen five times or I
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don't have to keep saying over and over again, what's for
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dinner, What's for dinner? And I don't know what I want for
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dinner. Does anybody like that out
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there? I mean, actually, when I took
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speech therapy, you had to come up with 10 statements that you
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would say every day. And I was trying to think of
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these 10, what 10 statements do I say every single day?
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And I was like, I guess I say, I love you, you know, good
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morning, goodnight. And I and I was struggling to
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find 10 and I thought, and then it my, and one popped in my
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head. It was like, I don't know what I
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want for dinner tonight. So I'm like, holy smokes.
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Anyway. But anyway, when you do that
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with that magnet board and then it's visual, it's simple, and
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everyone in the house sees it, so you'll be accountable, right?
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And then there's that accountability buddy system, you
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know, enlist a friend or partner or care partner or a family
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member to check in once a day. And it can be simple as, you
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know, a daily meds check, right text or a funny meme when you
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hit a goal, right. And I, I do that when, when
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Carmen's not around, I'll send her a thing.
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Took my meds, you know, took my meds.
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And so it's sort of, you know, it's just sort of a way to keep
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accountable. And then if they don't hear from
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you that day, they might they're coming back to you.
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Hey, are you on schedule? Are you taking your meds?
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It's just something that that that's a little hack that could
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be easy. And, and here's a shout out to
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my buddy Brian. And he's the king of sending
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reminders disguised at jokes. So hey, Brian, and if you don't
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know about Brian, then you should check out our podcast
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Life in Motion, the Parkinson podcast.
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It's Sundays at noon, noon, Eastern Time, so you can check
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that out. Anyway, how about this?
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Here are some quick fire hacks that we got from viewers because
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these are amazing, right? So here it is.
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Susan puts her pill bottle in her shoe at night because I
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never leave home without my shoes.
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Therefore she never forgets her pill bottle.
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MM tapes reminders to a steering wheel.
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Janet said if she can't find motivation, she borrows someone
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else's for the day. Doug in Winnipeg said set, set
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your hardest task first thing before you have time to talk
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yourself out of it. And I used to have an old saying
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back in the the corporate days was eat that frog, right?
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Eat that frog. So the thing that you want, that
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thing that you are most don't want to do that day, the biggest
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thing, do it first, the hardest task 1st and get it out of the
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way. And therefore you'll actually
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get it done right. Hey, quick pause.
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If you're getting value from these tips and these stories and
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real life hacks, then make sure you hit the subscribe button
11:44
below. That would be cool.
11:46
Then this is what we do every week.
11:47
Real talk, support, some laughs, and the best Crowdsource advice
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you're ever going to find anywhere.
11:53
Plus, you'll be the first to know when there's a new episode
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of Live Q&A or a special guest in the hot seat.
11:57
So hit subscribe and let's keep this community growing.
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OK, now let's answer a couple of the most most asked questions.
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And here's one from a viewer. How do you handle afternoon
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fatigue? And this is a big, big, big
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question. Well, I schedule most of my
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important stuff in the morning. This is how it does.
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I roll. I always keep water close.
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And yes, sometimes I take a power recline after lunch.
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No guilt. If I need to nap, I nap.
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And also if I push too hard and I I pay for it later.
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So I'm learning to listen to my body's early warning signs.
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And I would suggest that you do as well.
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And if you've got a good hack or a good, you know, a good hack or
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a good tool or a good tip, make sure you leave it in the
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comments below. And don't forget I read.
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I read and I respond to every single one.
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So whether it's even a hey or a high, I'm, I'm, I'm, I'm right
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back at you. OK, here's another one that came
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in. How do you keep your spirits up
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on hard days? That's a tough one, right?
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That's really tough. Some days are really, really
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tough with Parkinson's. But for me, music helps.
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You know, sometimes I blast the 80s, right?
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The 80s hits something, something.
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And sometimes it's just something mellow.
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I text a friend, I step outside or I just focus on one thing I
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can do, no matter how small. And on a really, really bad day,
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well, guess what? I let myself have it.
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No shame in having a grumpy day name now and then.
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I actually have a video, one of the other episodes of the
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podcast. You should check it out.
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And it's called Let Me Have a Bad Day.
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So just sometimes there's days that you have to have a bad day
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and and it's what it's OK to have a bad day and you shouldn't
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have to feel super grumpy or super guilty about that at all.
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OK, here's a question. What do you wish you'd known at
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diagnosis? Do you have all day?
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Well, probably the number one thing is that asking for help
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isn't a weakness. That's the PD community.
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It's full of people who understand and it's OK to grieve
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what you've lost. So even while you're grateful
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for what remains, right? So you'd be grateful for what
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I've left, but you know, it's, it's, it's OK.
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It's OK to grieve what, what I've lost.
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But you know, that's why this PD community is so, is so amazing.
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And, and my biggest advice would be to reach out for help.
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Always, always, always, always and quick before it gets too
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much, before it festers, right? So here's OK, quickly.
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Here's things that I wish I knew sooner.
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It's OK to grieve right the the old you and to look forward to
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the new you. OK, Tell your friends and family
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early because they'll surprise you with support.
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Write down questions for your doctor ahead of time.
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Celebrate every single small win, every single small win.
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The world's best Parkinson Party might just be getting your socks
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on by yourself. And those are some of the
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really, really quick ones. But I want to end on some hope.
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OK, so a friend of mine just completed their first
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fundraising walk. And I think it was like 10
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kilometres. It was something that that that
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she thought was going to be like impossible two years ago when
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she got diagnosed. There's like, there's no way I'm
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going to be able to run or walk 10 kilometres.
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And she knocked it out of the park.
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So amazing, right? Like, this is awesome to just
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stretch yourself. Don't ever limit yourself
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because of Parkinson's at all. How about this?
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You know, there are more clinical trials and more new
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treatments on the horizon than ever before.
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Progress isn't always fast, but it's real.
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And if you're struggling today, I want you to remember
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something. Small wins count.
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Small days just getting out of the out of bed, right?
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Some days, some days just getting out of bed is enough.
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If you need a break, take it. And if you got a big win, a big,
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big or small, share it below. We celebrate them all here.
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We really, really do and I want to thank you for spending this
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time with me. Every story shared and every
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solution tried brings us all one step closer to a brighter
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future. And if you haven't already, hit
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subscribe to stay updated on this journey, on this journey,
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like and share and don't forget to join the inner circle for
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support, laughs and live chats. All right, drop your win of the
16:06
week, your tip or just hello in the comments.
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I read everyone and your voice truly matters here.
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And if you made it this far, this is your Bryceism of the day
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of this episode. Ready for it?
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With Parkinson's, every day is a team sport.
16:22
Some days you're the coach, some days, some days you're the water
16:26
boy. But you're always part of the
16:28
game. I like that.
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I really like that. You go and you have a great day.
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Do life today. Parkinson's may be part of your
16:41
life, but it doesn't get to define it.
16:44
Thanks for listening to Living with Parkinson's, the good, the
16:47
bad, and the reality. If this episode moved you,
16:51
helped you, or reminded you you're not alone.
16:54
Share it with someone who needs to hear it.
16:56
Want to go deeper? The Inner Circle is waiting.
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Monthly Zoom calls, 24/7 community, and a Direct Line to
17:03
Bryce. You'll find the link in the show
17:05
notes. Until next time, keep showing up
17:09
and keep doing life today.