Latest / Living with Parkinson’s | Bryce Perry / When the Meds Stop Working: The Battle with OFF Time

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When the Meds Stop Working: The Battle with OFF Time · Living with Parkinson’s | Bryce Perry

• 0:01
  They told him he had five good years left.
• 0:04
  That was 15 years ago. He's still standing, still
• 0:08
  speaking, still living. This is living with Parkinson's,
• 0:12
  The good, the bad, and the reality.
• 0:15
  A podcast about what happens when life throws you something
• 0:18
  incurable and you fight back anyway.
• 0:21
  Hosted by Bryce Perry, diagnosed at 4015.
• 0:25
  Years into the battle, This is the truth behind the tremor.
• 0:29
  Let's begin. You ever take your Parkinson's
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  meds and feel nothing? Well welcome to off time when
• 0:38
  the meds forget to show up and your symptoms throw a party.
• 0:43
  They told him he had five good years left.
• 0:46
  That was 15 years ago. He's still standing, still
• 0:49
  speaking, still living. This is Living with Parkinson's,
• 0:54
  The Good, the Bad, and the Reality Podcast about what
• 0:58
  happens when life throws you something incurable and you
• 1:01
  fight back anyway. Hosted by Bryce Perry, diagnosed
• 1:05
  at 4015. Years into the battle, this is
• 1:08
  the truth behind the tremor. Let's begin.
• 1:11
  All right, well, welcome, welcome, welcome, welcome back
• 1:14
  to the channel. A big hello to my inner circle,
• 1:16
  private community and all my channel members.
• 1:19
  Your support means the absolute world to me.
• 1:21
  And if this is your first time here, my name is Bryce and this
• 1:23
  is life in motion. No, it's not life in motion.
• 1:27
  This is this is what is this living with Parkinson's, the
• 1:30
  good, the bad and the reality. Life in Motion is another
• 1:32
  podcast and I was actually just looking at some stuff with my
• 1:37
  good buddy Brian. And if you're interested in kind
• 1:39
  of some more of the funner side, the more humorous side of
• 1:44
  Parkinson's, that we have a podcast called Life in Motion
• 1:47
  and it's live on YouTube every Sunday at noon Eastern Time.
• 1:52
  But anyway, this is the good, the bad and the reality.
• 1:55
  And you know that this, this podcast is a space for strength,
• 1:58
  hope, and honest conversations about Parkinson's and those
• 2:01
  living with it and those loving someone who is.
• 2:03
  And if you, and if that's you, make sure that you subscribe.
• 2:06
  Today's today's episode is when the meds stop working, the
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  battle with the off times. And I really can't get right
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  into this. It's so important and I want to
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  break it down. Off time is when Parkinson's
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  medication either hasn't kicked in yet or it's wearing off and
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  the symptoms come roaring back. Off time.
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  It's that awkward hour before your next dose when everything
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  just slows down. The stiffness, the shuffling,
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  the freezing. You're back in the thick of it.
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  Even though you took your meds like clockwork.
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  It's like your brain says, you know, Sorry, we're closed for
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  maintenance now. For me, off time doesn't always
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  wait for when it's a convenient moment.
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  I don't know about you, but mine always hits me when I least
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  wanted to hit me. I've had it hit right before
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  meetings, right before filming, and yes even in the middle of a
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  public bathroom, which is a whole episode on its own.
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  Stay tuned for that. But sometimes it feels like my
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  body just checks out right. I'll go from feeling OK to
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  dragging my leg, my right leg actually freezing mid step and
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  or or or losing all motivation to even stand up.
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  It's frustrating, it's unpredictable, it's crazy.
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  Honestly it's exhausting. Especially when people say, but
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  you looked fine 5 minutes ago. Yeah, well now I look like a
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  broken wind up toy. But here's the real talk.
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  I can't eliminate the off times. True totally.
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  But I've learned how to ride it out better and I've learned how
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  to make them less and less. So I'm going to give you a
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  couple tips and a couple tricks that I've learned here that
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  hopefully are going to help you tip #1 track your timing, OK?
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  You know, if you listen to any of the podcast or the channel, I
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  set alarms on my phone. I set them, my wife's phone sets
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  them. I set them on my Alexis.
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  I set them everywhere. I can set them in my calendar,
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  you name it. Anywhere I get a reminder or
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  anything that will remind me. I have this three hour block
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  set, OK? And I need to pay attention to
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  when my meds actually start working.
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  So I have two different things. Like some of the things that
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  they have to pay attention to. Number 1 is, you know, stick to
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  your schedules, whatever that that is that your doctor is, is
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  prescribed for you and your medication timing.
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  Be diligent about it, right? That's how you manage your off
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  times. You have to be diligent.
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  Even 5 minutes late or 5 minutes early can mess you up.
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  So I set my alarms. I take my first dose in the
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  morning when I wake up and I set my alarm 3 hours later.
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  Now how did I get to 3 hours? Well, when I first started
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  medication over 15 years ago, I was taking them every four
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  hours. OK, but after time you start to
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  know, you start realizing when this off period starts to hit,
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  when the medication stops working.
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  Now my medication usually kicks in probably around the 25
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  minute, 30 minute area after I take it.
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  So I, I know that, so I know that when I take my meds, I'm
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  going to start to feel better right around that 25 minute
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  mark. So I know when I can start
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  moving in the morning, right? I know I have 25 minutes just on
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  my own starting the ceiling after taking my meds before I
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  can actually really get up and start moving and doing things.
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  So I know that time. But what I want you to start
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  doing now is I want you to start having a little journal or a
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  little thing and start noticing when your off time starts, OK?
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  Because it doesn't start at like if you're taking pills every
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  four hours, I guarantee you your off time is not starting at 4
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  hours. It's probably starting around
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  the three and a half, 3:15, maybe something even 3.
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  And you just have to know that number because you have to know
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  it's consistent, right? Because some days are different
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  than others. You know, some days you may go 4
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  hours and feel great. Next day, maybe go 3 hours
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  depending on what age. What you did, you know, you burn
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  through your levitopa faster. I know me personally, if I'm
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  doing something physical, I burn through it.
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  If I'm, if I'm, you know, that's my main thing.
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  Like if I'm being physical, I burn through it much quicker.
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  So I have to know these things, but you have to track it and you
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  have to see the trends, right? So in other words, if
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  everything, you know, Monday, you track it and around that
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  350. And what do I mean by your
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  symptoms coming back? I mean, how do you know it's
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  your predominant symptoms? My predominant symptom is, is
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  stiffness, especially my right side.
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  And now it's cognitive, right? It's the, the memory, that kind
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  of brain fog stuff. So I started noticing around the
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  three hour and 15 minute mark ish.
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  I would start kind of getting kind of my head would start
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  going a little fuzzy, it wasn't feeling right and then I'd start
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  feeling the stiffness in my leg. And so I and I'd write that
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  down, you know, I took my meds at this time.
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  Here's when I started feeling it.
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  I took my meds at this time. Here's when I started feeling it
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  and I didn't try to like self diagnose myself and try to
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  figure it out. I just when my next doctor, when
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  we came, I took it to him and I said, here's what here's here's
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  the deal. I'm taking my meds here.
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  I'm and it's consistent, right? It's consistent whether you know
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  through about, you know, a two week time, it's been very
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  consistent. And he said, OK, then we have to
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  either, you know, either have to maximize your dose or we have to
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  lower the time. And so that, you know, I always
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  think a good rule of thumb, and so is my doctor, that he would
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  rather keep the lowest amount of levodopa to and you know, keep
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  the dyskinesia away as long as you can.
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  So it automatically I said, let's take him sooner right than
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  rather than add more levodopa and that's what you have to find
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  out, find that timing. So, and, and again, these are
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  the types of things that I do. I've been for 15 years now going
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  to see my doctor every six months.
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  Every time I go, I've got my little chart just so I need to
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  show him and he looks at that and determines how my meds are
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  working by that. So that's what you have to do,
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  right? So just just plan around and not
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  again, not when you're taking like, well, you plan when you
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  take them, but make some notes beside when you start feeling
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  those predominant systems come back.
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  All right, And how about tip #2 All right, I kind of mentioned
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  this earlier. So be smart with your meals,
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  right? Protein can mess with
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  absorption, right? If you're having a heavy meal, I
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  might, if I'm having a heavy meal, I might shift my meds
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  slightly or I'll take an extra dose, you know, But of course,
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  I've checked my doctor and he said it's OK.
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  But you got to watch that protein, you know for a fact, if
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  you're going to have a heavy meal and you're having a lot of
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  chicken, a lot of protein, a lot of things are going in, you take
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  a little bit more, right? Take a little bit more or you'll
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  have to take it sooner as it's going to wear off faster.
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  So your whole key is if you don't, you don't have to be off.
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  See, that's the whole thing. Everything is well, there's on
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  and off. You have to be on.
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  You have to be off. No, you don't.
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  No, you don't. You can try to schedule, you try
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  to hit that prime perfect #9 times out of 10, you're going to
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  be off. But my off period Times Now run
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  maybe 10 minutes, 15 minutes. And so if no matter what I'm
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  doing, you know, if I'm on vacation or I'm on a trip and
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  I'm travelling or whatever, I know I might have 10 minutes and
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  I'm gonna have to rest and relax and then I'll, it'll get better.
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  So that, that's what I would say.
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  So if you gotta watch those meals and then tip #3
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  communicate it. I've learned to let people know
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  around me what's happening. It's not me being lazy or Moody.
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  It's my dopamine ghosting me, right?
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  So communicate to your friends, your family, your Co workers
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  about this off time. You know, hey, this is how my
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  meds, this is how parks and works.
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  This is how my meds work. And you know, if you start
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  seeing me going that way, you know, that's what you know.
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  It's not that I'm all of a sudden got in a bad mood.
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  It just may be wearing off. My drugs may be wearing off.
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  But rest assured and then know the number right when you start
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  knowing that it's going to, it's going to be good in 20 minutes,
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  right? Give me 20 minutes and I'll get
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  back to you. And I'll do that at work.
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  There's some days at work where you know, the brain fog and the
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  memory has been hit in this off period or I've messed up the
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  medication and I'm off and I'll be like, you know what?
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  I'm just going to excuse me for 20.
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  I promise you'll be right back and I'll I'll know the answers
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  to this. So make sure you communicate
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  with all around you. And I find it a lot easier to
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  communicate sooner than later, right?
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  It's harder to communicate in the middle of it when you're
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  down. Like, OK, this is my drugs and
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  you know, this how it works and something prescription work.
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  Do it first. Hey, this is if I'm spending a
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  lot of time with you tonight, let me just tell you, I have
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  Parkinson's. This is what some of the things
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  that I go through. This is what it looks like.
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  Don't worry about it. We'll be OK.
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  You know that type of thing. So I would encourage you on
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  that. OK, so there's 3 tips, you know,
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  and what about you? How long is your, do you, do you
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  know, do you, do you know when your off time is put in the
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  comments? I'd love to hear your, your,
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  your length of time, right. So how long does your beds last?
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  When is your off time and how many off times?
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  You know, just tell me a little bit about it.
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  I'd love to get your, your input.
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  And it should, it'll help other people.
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  The other people read the comments too and they get
• 10:28
  encouragement from them or they get answers from them.
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  So, you know, be a part of the community and, and put in the
• 10:34
  comments. We'd love to start the
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  conversation. Right?
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  All right, tip #4 you need to rest without guilt.
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  If I need to sit down and wait it out, I sit.
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  And I've learned to do that without apologizing.
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  So no matter what it is, no matter where I am, if I need to
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  sit something out, I'm going to sit it out.
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  And I don't apologize. It's just me.
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  I don't know if I'm so sorry. Oh my gosh, how do you put up
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  with me? I'm so sorry.
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  It's like, no, this is the way it is and this is what has to be
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  done. So don't feel guilty because you
• 11:02
  have to take a rest. Don't feel guilty something
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  takes you a bit longer. And don't feel guilty if you
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  have to pull out of something even just for a few minutes or
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  even for half an hour just before you get everything
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  straight and you're good to go again, right?
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  And you know, you can tell us somebody, it's like somebody who
• 11:15
  has a headache. You know, if someone's having
• 11:16
  this migraine headache in the middle of a meeting and they're
• 11:18
  sitting there and they can't concentrate, what do they do?
• 11:21
  They grab some Tylenol, right? They take some Tylenol and it
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  takes time for that Tylenol to take away the headache.
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  So explain it that way, right? It doesn't cure you.
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  Like, it just takes it away. It numbs it out.
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  So here's the other thing though.
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  Let's talk about the mental side of off mental side.
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  Off time doesn't just hijack your body, it messes with your
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  head too. You feel useless, you feel
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  frustrated, you feel embarrassed, and if you're like
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  me, you start beating yourself up.
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  So here's the deal. Don't.
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  Here is the deal, don't. If this isn't your fault, you
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  didn't screw up your timing. Parkinson's is unpredictable.
• 11:57
  If you need a break, you take it.
• 11:59
  If you need to cry, cry. And if you need to punch a
• 12:01
  pillow, do it. Just Just not in public unless
• 12:04
  you want a whole different kind of attention.
• 12:06
  But just, you know, just do it. Feel, feel it.
• 12:09
  Feel what you need to feel. And if you're dealing with off
• 12:11
  times, know this, that you're not alone.
• 12:13
  This is part of this Parkinson's ride.
• 12:16
  But we can learn to manage it. We can learn to adapt to it and
• 12:19
  we can live beyond it. And hey, to my inner circle,
• 12:22
  private community and my channel members, thank you for walking
• 12:24
  this journey with me. And if you're not a member yet,
• 12:27
  come join us inside the community.
• 12:28
  You can direct message me, we can post with chat and be part
• 12:31
  of our monthly live calls, and you'll get early access to
• 12:34
  content and priority replies for me.
• 12:36
  And if this episode helped you, made you helped you, or made you
• 12:39
  smile, give it a thumbs up. Please share it with somebody
• 12:42
  who needs to hear it and drop a comment below.
• 12:44
  What does off time feel like for you?
• 12:47
  And until next time, keep showing up.
• 12:50
  Even when it's hard. Actually, especially when it's
• 12:53
  hard. You got this.
• 13:02
  Parkinson's may be part of your life, but it doesn't get to
• 13:05
  define it. Thanks for listening to Living
• 13:07
  with Parkinson's, The good, the bad, and the Reality.
• 13:11
  If this episode moved you, helped you, or reminded you
• 13:15
  you're not alone, share it with someone who needs to hear it.
• 13:18
  Want to go deeper? The Inner Circle is waiting.
• 13:21
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 13:25
  Bryce. You'll find the link in the show
• 13:27
  notes. Until next time, keep showing up
• 13:31
  and keep doing life today.