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Transcript

Parkinson’s Progression: 5 Daily Habits That Quietly Make It Worse (And What to Do Instead) · Living with Parkinson’s | Bryce Perry

• 0:00
  You know, most of us don't want to think about Parkinson's
• 0:02
  progressing, and I get it. But what if I told you some of
• 0:05
  the things that make it worse are tiny little habits that we
• 0:09
  don't even notice? Nothing dramatic, just small
• 0:12
  things over time. So today I want to walk you
• 0:14
  through five of those sneaky little habits and simple swaps
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  we could make that actually help and make sure you hang out till
• 0:22
  the very end because Carmen is back with round two of her
• 0:26
  Carmenism Challenge. You know, last week we almost
• 0:30
  tied almost. So today we're going to settle
• 0:33
  the score and you get to vote again.
• 0:35
  And I need your votes, because hers is darn good.
• 0:39
  Welcome to Living with Parkinson's, The Good, the Bad,
• 0:43
  and the Reality. Real talk, real life, real
• 0:47
  community with Bryce Perry. Let's begin.
• 0:52
  Well, welcome back to the channel and to all our brand new
• 0:55
  viewers. Almost 1000 of you joined and
• 0:58
  subscribed last week. I am so glad you're here.
• 1:00
  And so if you're new, I'm Bryce and this is living with
• 1:03
  Parkinson's. The good, the bad and the
• 1:05
  reality. Now, around here, we talk
• 1:07
  honestly about Parkinson's, the parts that nobody warns you
• 1:11
  about, mixed with parts that still make us laugh.
• 1:14
  And you know what? This channel isn't just for
• 1:17
  people living with Parkinson's. It's also for the people who
• 1:20
  love us. Every episode we include
• 1:22
  something called Carmen's Care Partner Corner, where my wife
• 1:25
  Carmen shares something directly to the caregivers walking
• 1:28
  alongside of us. And for those of you who are
• 1:31
  doing Parkinson's solo, without a caregiver at home or someone
• 1:35
  to notice when you're off or remind you about your meds, I
• 1:38
  see you. And I know how heavy that can
• 1:40
  feel. So that's why we include a solo
• 1:43
  spotlight in every episode as well.
• 1:45
  Just a little moment just for you.
• 1:48
  OK, before we dive in, do me a quick favor.
• 1:51
  Last week on one of the one of the episodes, I asked you to hit
• 1:54
  like and almost 1000 of you hit like and YouTube blasted that
• 1:59
  video out so more people who have never heard of this channel
• 2:03
  would hear of us. Isn't it interesting?
• 2:04
  1000 likes and 1000 subscribers. You know, some of them are
• 2:08
  literally watching right now because of you.
• 2:10
  So let's do it again today. Hit that like bit button, hit
• 2:14
  the hype button and let YouTube know that this kind of real
• 2:18
  conversation needs to reach the people who have Parkinson's and
• 2:21
  feel alone out there. And I thank you for that.
• 2:25
  I really appreciate it. It's awesome.
• 2:28
  All right, let's talk about these habits.
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  And I don't. And and don't worry, this is not
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  about guilt. This is about tiny course
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  corrections. Not big dramatic changes, just
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  little things that we can adjust together.
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  OK, so the first one, it's I don't know if it's surprising or
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  not, but it's wild. It's sitting too long.
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  You ever sit down for 5 minutes and then suddenly it's an hour
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  later? That happens to me all the time.
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  I just lose track of time. Well, here's why it matters.
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  When we sit too long, everything slows down.
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  Our blood flow, our joints, our muscles, and suddenly we try to
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  get up and it feels like our whole body was shrink wrapped in
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  the night. Now the science says long
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  stillness increases stiffness and slows mobility.
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  In plain English, sitting too long is like letting your engine
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  idle until it gets cold and then our body goes, no thanks, I'm
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  staying right here when you try to move.
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  So don't try to exercise more. Just stand up once every hour,
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  shake it out, March in place, wander towards the fridge like
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  you're considering a snack. Even if you don't get one.
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  One minute, that's all it takes. Think of it as like hitting your
• 3:43
  unfreeze button. Did you know you had an unfreeze
• 3:46
  button? If you if you knew that or
• 3:49
  didn't know that #unfreeze button in the comments.
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  All right, the second habit is skipping movement on bad days.
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  Now trust me, I get this one. When I wake up stiff and slow,
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  the last thing I want to do is move.
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  But ironically, that's the exact moment a tiny bit of movement
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  helps the most. Science says that movement
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  boosts dopamine and keeps the system flexible.
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  Real life version. If everything feels tight and
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  slow, moving a tiny bit makes it feel a tiny bit less tight and
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  slow. Whoa, now that was that was that
• 4:27
  was. Wow, Bryce, good one.
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  You know, some days my version of exercise is walking to the
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  mailbox and saying to myself, OK, Olympic athlete, calm down,
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  It still counts. Pick up the smallest movement
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  you can do, even on the worst days, even just three minutes.
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  A hallway walk, chair stretches, anything that keeps the engine
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  from shutting down completely. OK, habit #3 is having a chaotic
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  sleep schedule. Not the amount of sleep, the
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  schedule you see Parkinson's and sleep.
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  It's like raccoons trying to run a 5 star restaurant.
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  It's all over the place. But here's the trick.
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  Your wake up time matters more than your bedtime.
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  Science says consistent wake up times stabilize your internal
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  rhythm. Plain English.
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  Your brain behaves behaves better when it knows what time
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  you're getting up. Now don't worry about going to
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  bed at the right time because really there is no right time to
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  go to bed. Just wake up consistently and
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  let your brain adjust the rest. Now isn't that interesting?
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  Have you ever felt that way? Like no matter what time you go
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  to bed, you wake up at the same time every time.
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  You know when you were a teenager that was like 3:00 in
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  the afternoon and now it's like 435 thirty.
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  I don't know. It gets seems to get earlier for
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  me the older I get. Man, I wish sometimes I could be
• 5:53
  a teenager again. How about that in the in the in
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  the in the comments. If you ever want to just go back
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  and sleep all day like a teenager, put that in the
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  comments. Just sleep all day like a
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  teenager. And that way I won't feel so
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  alone when I have those wild thoughts.
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  OK, let's move on to habit #4. And don't forget Carmen, man,
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  she was excited. Thank you.
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  She just wanted me to thank everybody who who voted for her
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  carbonism last week. And it was really good.
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  I get it. It was really good.
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  So she, you know what? She wants a rematch, and she's
• 6:24
  getting one, and I've got a good one, so that's still to come.
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  OK. So don't forget about that.
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  All right? Habit #4 is taking meds at
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  random times. You knew.
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  You knew I was going here. Yes.
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  I lived this one for far too long.
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  I used to take my pills whenever it felt right in the moment.
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  And let me tell you, my brain did not agree with that system.
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  When your Med times jump around, guess what?
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  Your symptoms jump around. It's like sending your brain a
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  calendar invite that says we're going to meet sometime between
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  9:00 AM and Thursday, and your brain has no idea what to do
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  with that. So take your meds at roughly the
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  same time everyday. Not perfectly, but consistently.
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  Meds on time, every time. Meds on time every time.
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  And that brings us to our fifth habit.
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  And that's ignoring subtle changes.
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  And this one, this one hits close to home for me.
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  Most progression doesn't come in hot and loud.
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  It slows up quiet. It shows up quietly.
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  A bit more stiffness, you know, Meds wearing off a bit sooner.
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  Tremor a little louder than usual.
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  Easy to overlook. And look, I did this for years.
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  If something felt a little different, I'd think Nah, that's
• 7:42
  probably nothing and then I'd pretend I didn't feel it.
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  But here's the truth. Catching the small stuff early
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  makes the biggest difference. Those quiet changes, they're
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  like the the check engine light. Ignoring them doesn't make them
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  go away, it just makes for a bigger bill later.
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  And if you're doing Parkinson's solo, I want to talk to you
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  directly just for a second. Because when you don't have
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  somebody at home to notice these subtle shifts with you, it's
• 8:13
  easy to second guess yourself or to brush them off or to ignore
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  them. So here's something that you can
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  that can really help. Pick just one small habit from
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  today to focus on. Not 5, not even 2.
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  Just one. Consistency becomes your
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  superpower when you're doing this alone.
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  And that one habit you stick with, that's what moves the
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  needle. OK, let's shift gears for a
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  minute because it is time for a lot of your favorites.
• 8:42
  It's time for Carmen's care partner corner.
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  Now, here's what Carmen, my wife, wrote for me to read to
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  you today. All right, Living with
• 8:50
  Parkinson's means there are all 100 little habits that matter.
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  And as a care partners, we see those habits even when you
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  don't. Not because we're keeping score,
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  but because we love you and we want the easier days to
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  outnumber the harder ones. So if you're trying to change
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  one habit this week, don't do it alone.
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  Let us be a part of it. And if we gently remind you
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  along the way, just know it's coming from a place of support,
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  not supervision. Though I will admit, sometimes
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  the supervision part is a tiny bit tempting.
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  OK, you made it this far. You ready?
• 9:29
  Here it is. This is this is the Carmen ISM
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  Bryce ISM Smackdown Round 2. So here, if you're ready.
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  This is Carmen's Carmenism that she submits for you today.
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  With Parkinson's, small habits become big problems, which is
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  why care partners nag with love. Trust me, if we didn't care this
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  much, we'd let you do whatever you wanted, and we would just
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  keep the fire extinguisher handy.
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  That was good. You know, that was good.
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  OK All right, That was good. What to do?
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  Vote in the comments. Who wins this round, Team Carmen
• 10:04
  or Team Bryce? How about that?
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  Hashtag Team Carmen or hashtag Team Bryce.
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  And that was really good. That was really good, Carmen.
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  But I'm going to tell you, you better be ready for this because
• 10:15
  here is your Bryce isn't for today.
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  With Parkinson's, the best way to fight progression is one
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  small habit at a time, and if our habits fall apart tomorrow,
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  it's fine. Parkinson's might be
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  progressive, but so are we eventually.
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  Well, there it is. It's best I could come up with.
• 10:38
  I think it was pretty good. I think Carmen's was good too.
• 10:41
  But you let us know Team Bryce or Team Carmen in the comments.
• 10:43
  And hey, listen, if you are still watching this and you
• 10:46
  haven't subscribed, come join the community.
• 10:48
  You're one of us, you're here. Let's keep going.
• 10:52
  And if you know somebody who might need to hear this message
• 10:55
  today, please share this video with anybody, anybody.
• 10:59
  Our mission, OK, our mission is to let every single person that
• 11:04
  has Parkinson's in their life, whether they're have Parkinson's
• 11:07
  or they love someone who does that they don't have to do this
• 11:10
  journey alone ever again. I love you guys.
• 11:15
  Amazing things are happening. Thank you for joining this ride
• 11:17
  with me. Thank you for coming along with
• 11:19
  me and letting me part of your life as well.
• 11:21
  And remember this until next time, you know the drill.
• 11:25
  You keep showing up, you keep being real, and you keep doing
• 11:29
  life. Today I'll see you on the next
• 11:31
  episode. Parkinson's may be part of your
• 11:36
  life, but it doesn't get to define it.
• 11:39
  Thanks for listening to Living with Parkinson's, the good, the
• 11:42
  Bad, and the Reality. If this episode moved you and
• 11:46
  helped you or reminded you you're not alone, share it with
• 11:49
  someone who needs to hear it. Want to go deeper?
• 11:52
  The inner server was waiting monthly Zoom calls, 24/7
• 11:56
  community, and a Direct Line to Bryce.
• 11:58
  You'll find the link in the show notes.
• 12:00
  Until next time, keep showing up and keep doing life today.