Latest / Living with Parkinson’s | Bryce Perry / Navigating “Wearing-Off”: When Your Meds Peak and Plunge

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Navigating “Wearing-Off”: When Your Meds Peak and Plunge · Living with Parkinson’s | Bryce Perry

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  Did you know that in within five years of starting levodopa, more
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  than half the people living with Parkinson's will deal with
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  wearing off every single day? I didn't believe that for that
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  start at first, but once it started happening to me, I knew
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  exactly what they meant. Wearing off doesn't wait for the
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  right moment. I've had it hit me in the middle
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  of a meeting, standing in a grocery store checkout, even
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  halfway through trying to make dinner.
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  One second I'm fine and the next I feel like my body clock
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  strikes midnight and everything grinds to a halt.
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  It's like being Cinderella at midnight, but instead of losing
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  the glass slipper, I lose my ability to move smoothly.
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  Well today I want to share 5 hacks that I used to survive
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  wearing off and stick around to the very end because I've got a
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  Bryceism that completely changes the way and how I see these
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  moments. Well, well, well, welcome back
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  friends. 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. Now this channel, this podcast
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  is all about real talk, real stories, and real hope for
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  people living with Parkinson's and the people who care for
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  them. So hit subscribe if you want
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  tips that you can actually use, encouragement from a real
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  community, and maybe even a laugh along the way.
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  Now this is Part 2 of my Med Hacks for Real Life series.
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  Now. Last time we tackled fatigue and
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  today it's all about when your meds peak and plunge.
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  Now I'll never forget the first time I realized I was wearing
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  off. I was in a meeting mid sentence
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  and suddenly my stiffness ramped up and my words stuck in my
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  throat. To everyone else, it looked like
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  I was just pausing to think, but inside, I felt like my body had
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  betrayed me. And then there was a time at the
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  grocery store check out. I had all my groceries on the
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  belt, people lined up behind me, and boom, I'm frozen.
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  The cashier gave me this polite smile, you know the one.
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  And while I tried to fumble with my wallet, Carmen had to step in
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  and finish. Pain.
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  I wanted to disappear right there in Aisle 4.
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  Now, over the years, I've had plenty of these moments, some
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  frustrating, some embarrassing, and yeah, even a few that I can
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  laugh about now. But the key is I've always
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  learned ways to manage them, right?
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  I've no. So I haven't always learned
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  ways. I've learned ways to manage them
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  after 15 years of this. So let's talk about 5 hacks that
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  helped me the most. And I know they'll help you.
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  So here's hack number one. Track your timing.
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  The first step in surviving the wearing off is spotting the
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  pattern. Now, for me, it started with a
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  simple notebook, right? Not too complicated.
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  Every time I took meds, I wrote it down OK when they kicked in,
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  I wrote it down right. And how I felt when they kicked
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  in and the difference from when I before I took my meds And then
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  when I started to notice stiffness or slowness or my
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  predominant, you know, symptoms coming back, I marked the down
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  the time. Within a week, I could see the
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  pattern. Like clockwork, 3 hours after
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  dosing, things started to slip. OK, now I've graduated up, I use
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  a pill timer cap bottle or pill time timer cap on my pill bottle
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  and you know, I that way I always know my last dose.
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  It was, you know, some people use apps.
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  I've working on a journal that I'm going to give and probably
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  get out to you as well soon. The point is, once you know your
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  rhythm, you can work with it instead of being ambushed by it.
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  That's so important. OK, moving along hack #2 is you
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  need to plan around your on times.
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  Now I learned really quick that I can't schedule life randomly
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  anymore. If I want to go grocery
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  shopping, if I want to meet a friend, or if I even want to
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  record a podcast like this, I plan for it on my on times.
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  OK, so when you see me, I'm on on.
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  It's when people say like you look so good.
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  You sound great. How do you get your voice?
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  This is my peak on when you see me, I'm peak on.
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  OK, and it's not just me, Carmen knows the drill.
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  She'll ask do you want to go out for a walk?
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  And I'll say, you know what, check back with me in 45 minutes
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  and she already knows that's going to be my when I'm on and
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  when I'm feeling the best. But here's the thing, it's not
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  about being rigid, it's about being realistic.
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  You know, once I stopped fighting against my biology and
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  I started planning with it, life got a little smoother.
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  And it will for you too, I promise.
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  Act #3 small snacks and stretches.
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  I call this one small snacks and stretches.
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  So when I feel myself slipping, sometimes a little bridge helps.
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  For me, it's an apple or banana, a handful of almonds or peanuts,
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  and of course my M&M peanuts. And I pair that with a few
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  shoulder rolls or marching in place and I can sometimes
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  stretch out the window until my next dose kicks in.
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  Now this is so important. If you forgot your meds at home
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  or you ran out and you didn't take enough or and you or you
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  thought you'd be home in time for your next dose.
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  So one time as an example, one time I, I was out running
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  errands. I started feeling it creeping
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  in, didn't have my pills with me.
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  And luckily I had some guess what peanut, almonds, peanut
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  almond or sorry, almond M and Ms. in the car.
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  Don't really like them that much, but they were in the car.
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  Don't know why. It must have been after
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  Halloween and that tiny snack and a couple of minutes of
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  walking around the parking lot brought bought me just enough
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  time to get home and take my dose.
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  Now this is not a cure at all, but it takes the edge off.
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  So if this is, if this is sounding familiar, hit the like
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  button so more people can see the real side of Parkinson's and
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  what we really need to hear. And tell me in the comments,
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  when do you notice your meds wearing off the most?
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  Morning, afternoon or evenings? Really cool to see how different
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  we are and then again, maybe how similar some of us are.
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  I'd love to see that. So morning, afternoon or
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  evenings, when do you notice your meds wearing off the most?
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  And if you don't know what I mean by meds wearing off, it's
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  like when do you start feeling crappy?
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  When do, when do those symptoms start coming back?
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  When do you start getting, why do you start with a headache?
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  Like my head starts to hurt a little bit.
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  I get a little bit brain foggy, then I feel the stiffness
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  kicking in. Those are all my predominant.
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  That's my predominant symptoms. So for you, it may be different,
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  but you'll start to notice it starts slowly coming back in.
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  OK, that's how you do that. So moving on hack #4, you need
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  to talk to your doctor now. One of the biggest mistakes I
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  made early on was accepting that wearing off was my new normal.
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  I get fired up on this part. Don't do that.
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  There are options. Your doctor might adjust your
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  timing, your dose, or even add another Med like ACM.
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  Like ACM, What do they call them?
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  CMTSCOMTS, right? Or an inhibit inhibitor.
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  I can't even speak today. Or just to smooth things out.
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  Now here's a tip, do not walk into your doctor's office empty
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  handed. Bring a list of your symptoms
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  and they'll have times that they happen.
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  Like I said, write them down. I've shown up with notes that
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  Carmen help me keep and my neurologist could actually see
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  the patterns and make changes that made a real difference.
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  So even if I couldn't see the patterns or even if you're just
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  starting out newly diagnosed, you're like patterns.
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  What in the heck are you talking about?
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  Do what I said in step number one that tip 1 and write him
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  down and take him to your doctor and let him see it or her see
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  it. And they can they'll, they'll
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  see the patterns and they can help you with that.
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  I promise you. So that that it's such an
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  amazing difference. Like my God, my God, don't walk
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  in and say I think this happens or this might happen or I'm
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  feeling like this. Bringing the list of symptoms
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  and the time they happen. I've shown up with notes that
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  Carmen helps me keep right then my, and again, like I said, my
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  doctor sees the pattern, he makes the changes.
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  And that 10 minutes of preparation before that
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  appointment, it pays off big time.
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  Listen, don't waste those appointments.
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  You only get them what, once, twice, 3 * a year?
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  Me, it's 2 * a year. So that's a massive hack for
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  you. And you know what, again, people
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  keep saying to me, how do, how do I, you know, how do you not
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  look off? You don't go off you, you look
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  so good. I plan it when you see me doing
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  this. This is my peak on.
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  I'm peak on baby. This is like what I I would
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  never go on camera if I was off. Promise me, I promise you I
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  would not and you wouldn't want to see it either.
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  So there you go. And here is now my hack #5 and
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  this is what I call have a rescue plan.
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  Now. This one's for just for huge.
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  It's just huge for Peace of Mind.
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  I call it my rescue kit. So inside I keep an extra dose
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  of extra dose of pills, a small snack, a water bottle, and
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  sometimes even headphones. And like, calming music, right?
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  It's not about paranoia. It's about preparation.
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  You know, I still remember the day I forgot my kit, my little
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  kit, my rescue kit, and I was out with friends and I started
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  wearing off and I realized I had nothing on me.
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  I felt trapped, you know? And since then, I don't leave my
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  house without my kit. Even just knowing it's there, it
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  makes me feel calm. And that's when I'm.
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  What I mean by that is like in between doses, you take your
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  pills and you just know you're going off.
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  And sometimes it's just easier to get away, you know, have some
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  water, have a snack, put on some music for 5 or 10 minutes.
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  Like your friends. I'll be right back.
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  You know, I'm too long to chill out.
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  I can be right back and you can get through that moment and come
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  back on feeling good. You don't have to worry about
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  being off. Well, in my last video, some of
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  you shared your own experiences with wearing off and one person
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  said that they set alarms so they never miss a dose.
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  Great, great little hack, great little tip.
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  I set alarms on my phone. My, my Alexa, my, you know,
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  everything. Everything's going off all the
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  time. Just so I always have things so
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  I always know when it's going to happen.
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  So that was a great tip. And another said that they keep
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  their activities light in the afternoon because they know
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  their meds fade more often in the afternoon.
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  So they plan their day around it.
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  And these are the kind of tips that make this community so
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  powerful. These are, I just pulled these
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  other comments by the way. So keep them coming and I'll
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  keep featuring them. I promise you I will.
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  So why does wearing off happen? Well, here's the simple version.
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  Dopamine is like gas in your car.
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  And with Parkinson's, the tank empties faster and the fill UPS
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  don't last as long. So that's why we feel those ups
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  and downs. But here's the hopeful part.
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  Researchers are working on longer lasting levodopa
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  formulations, pump therapies, you know, DBS, even gene
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  therapy. There's real progress being made
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  and that gives me hope and I hope it gives you hope too.
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  That's a lot of hopes, right? Gives me hope.
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  You hope. We all have hope.
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  But anyway, so you know what I'm going to give you.
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  This isn't the end, but I'll give you my braces in for today.
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  With Parkinson's wearing off. Reminds me to build a life that
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  works with my rhythm, not against it.
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  Now I came up with that one after cancelling plans, you
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  know, one too many times because I crashed at the wrong moment.
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  Now, instead of forcing myself into a schedule that doesn't
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  fit, I plan around my rhythm and I and I and I do have right.
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  And some days it works beautifully.
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  And guess what? Some days I completely blow it.
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  But either way, I try not to beat myself up.
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  So if you're blowing it right now or you're just like, Oh my
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  God, I, I messed up my timing, it's OK, You blew it.
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  You blew it. Just blow it off and pick
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  yourself up, dust yourself off and let's go.
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  So those are my 5 hacks for navigating wearing off.
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  Which one resonated the most with you?
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  Or better yet, what's your best trick for handling those ups and
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  downs? Drop it in the comments.
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  Remember, I read every single one and respond to every one of
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  them. And that's not the best part,
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  that's a good part, but that's not the best part.
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  Your idea, your hack will help somebody else.
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  I promise you. There are people scouring the
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  comments looking for help, and you can be that help, OK?
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  And don't miss Part 3 of the series because you know what
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  it's called? Brain fog and Parkinson's. 4
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  simple mental boosters that I'm going to give you.
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  And that one's going to hit home for a lot of us.
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  And until then, you keep showing up, you keep being real, and you
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  keep doing life 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
• 12:52
  Bad, and the Reality. If this episode moved you,
• 12:55
  helped you, or reminded you you're not alone, share it with
• 12:59
  someone who needs to hear it. Want to go deeper?
• 13:02
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 13:06
  community, and a Direct Line to Bryce.
• 13:08
  You'll find the link in the show notes.
• 13:10
  Until next time, keep showing up and keep doing life today.