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How Much Levodopa Is Too Much? The Signs Nobody Warned Me About! · 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. Can you have too little or too
• 0:34
  much levodopa? And how do you know when you've
• 0:37
  crossed the line? You know, I thought more pills
• 0:40
  meant more control until dizziness and exhaustion hit me
• 0:42
  hard. No one warned me, and it nearly
• 0:45
  knocked me flat. So if you ever questioned your
• 0:47
  meds or wondered if your dose is truly helping you, this video is
• 0:51
  for you. Hey everyone, and welcome back
• 0:55
  to the podcast. I'm really glad you're here.
• 0:57
  If you're new here, my name is Bryce and I was diagnosed with
• 0:59
  Parkinson's at the age of 40, and I've been living with this
• 1:02
  thing now for 15 years. I also serve as the associate
• 1:05
  director of community outreach engagement with Parkinson
• 1:07
  Canada. So what you'll hear on this
• 1:09
  channel is a mix of personal experience and professional
• 1:11
  insight with someone who's living it day-to-day and working
• 1:14
  on and working to support others across the country.
• 1:18
  And this isn't just a podcast, it's a community.
• 1:20
  So whether you're newly diagnosed or you're many years
• 1:22
  into this battle, or you're a caregiver or just someone trying
• 1:25
  to understand, Park is the better the space is for you.
• 1:28
  We're all figuring it out together with honesty and with
• 1:30
  heart, and sometimes with a little humor.
• 1:32
  Just sometimes. And if that sounds like
• 1:34
  something you need, then hit the subscribe button and let's dive
• 1:36
  into this video. All right, let's start with
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  something that most people don't realize.
• 1:42
  OK, Can you take too much levodopa?
• 1:45
  There is no universal maximum dose of levodopa.
• 1:50
  Now I've heard people who have they've come up to me and said,
• 1:53
  you know, I'm on my maximum dose.
• 1:54
  I'm really scared 'cause it's not working that well and I
• 1:56
  can't take any more and I'm like, well, how many?
• 1:59
  What are you taking? They're like, well, I take like
• 2:00
  6 a day and I'm like, OK, wow, that's about 1/3 of what I take.
• 2:05
  So, you know, but there is no universal maximum dose for
• 2:10
  levonopa. Now, I know people who take just
• 2:12
  a few pills a day, right? And I know people like myself
• 2:15
  who take it every three hours and take it, you know, 4, three,
• 2:18
  4 * 3 or 4 pills every three hours, right?
• 2:21
  I know some people that take it every two hours all day long,
• 2:25
  and all of them can be right, right?
• 2:27
  If they're working for that person.
• 2:30
  So how do you know when it's too much or how do you know when
• 2:32
  it's too little? Well, for me, it was when I
• 2:34
  thought I was doing the right thing by taking an extra dose
• 2:37
  before Speaking of it. I figured that this is early on
• 2:39
  in my journey. I figured that the more pills
• 2:42
  meant more control over my body, right?
• 2:44
  About 20 minutes in, my body said otherwise.
• 2:46
  I got dizzy, I lost focus, I was sweating through my shirt and
• 2:50
  honestly, I was just trying to make it to the end of the talk
• 2:54
  without collapsing, right? And that was a wake up call for
• 2:57
  me, a massive wake up call for me.
• 3:00
  So let's talk about this. Why is the why does the right
• 3:03
  dose matter? OK, so if you're taking a dose
• 3:07
  so small that it barely does anything, then why are you
• 3:11
  bothering taking it at all? And then someone will say, well,
• 3:13
  what is small? What is large?
• 3:15
  Well, again, let's let let me re say what I just said.
• 3:18
  What if I said it this way? If you're taking levodopa and it
• 3:24
  barely is doing anything to you, to you and your symptoms, then
• 3:29
  why are you taking it? Now, I know that might sound
• 3:32
  really harsh. OK, so hear me out please.
• 3:34
  I'm actually a nice guy, but I know that sounds pretty harsh.
• 3:37
  OK, so but hear what? I hear what I'm going to say.
• 3:40
  The goal of levodopa isn't just to take the edge off your
• 3:43
  symptoms, it's to actually help you function for the day.
• 3:48
  What's that? OK, I'll say it again.
• 3:51
  The goal of levodopa isn't just to take the edge off your
• 3:54
  symptoms. It's to help you function, to
• 3:58
  help you move, to help you live your life, right?
• 4:01
  We want to. So here's the bottom line.
• 4:03
  We want to take, we want to take the least amount necessary.
• 4:06
  Absolutely the least amount necessary, but not so little
• 4:11
  that we're stuck in a body that won't cooperate with us.
• 4:14
  That may be noble, right? You may think it's noble, but
• 4:17
  it's not noble. It's it's unnecessary suffering.
• 4:21
  Now, I'll say this really clearly.
• 4:23
  People don't ever, sorry, please don't ever change your dose
• 4:27
  without talking to your doctor or healthcare provider.
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  I want to be really clear about that.
• 4:31
  I'm not advocating for you to like start doing what I do
• 4:33
  right, but here's what I want you to do.
• 4:38
  I want you to not be afraid to speak up if your meds aren't
• 4:41
  doing enough for you or if you feel like they're they're doing
• 4:45
  too much for you, right? So if you're feeling like you're
• 4:47
  well, I'll get into what you're going to feel like.
• 4:49
  But if you feel that there's hardly a change or a small
• 4:54
  change, right, or a change that still, you're taking lemon oak
• 4:58
  every day, you're getting up, you're battling, you're
• 4:59
  exercise, you're doing your thing right and you still are
• 5:03
  struggling. It still hurts.
• 5:04
  You still in pain. You're still, you know, just so
• 5:07
  stiff that you can barely move or you can only get, you know,
• 5:10
  an hour, a good hour, and then you're so stiff again.
• 5:12
  Are you having trouble speaking after an hour?
• 5:14
  You're then you need to advocate for yourself, right?
• 5:18
  Don't be afraid to speak up and say these meds aren't doing
• 5:21
  enough, right again. Or if you feel like doing too
• 5:24
  much, but again, you have to speak up, speak up for yourself.
• 5:27
  See, it took me like a year, a year to find my balance, a year
• 5:33
  of experimenting and testing with my doctor, OK, right, with
• 5:38
  my doctor to get the right to where I was going.
• 5:42
  So when I first started levodopa, OK, it took me that
• 5:45
  whole year. Because here's the thing, you're
• 5:47
  not just trying to figure out the right, the right dose.
• 5:49
  You're trying to figure out the right timing, right, and the
• 5:51
  right combination of both, right?
• 5:53
  The right dose at the right time, right?
• 5:55
  And how much that is, I work for the neurologist very closely.
• 5:59
  I like adjusting here, lowering there, you know, adding some
• 6:02
  something else to it to make it last longer, to make it in get
• 6:05
  into my body faster, right? And we had some setbacks, right?
• 6:08
  Some combos made me really sleepy, right?
• 6:11
  Others caused me the stiffness to creep back really fast.
• 6:14
  But eventually we found something that worked for me.
• 6:17
  And guess what? A year later, no, like a year
• 6:20
  and a half after that, Parkinson's had changed.
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  So I had to change with it. Really.
• 6:28
  Yes, you have to, you have to really understand this.
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  And I want to emphasize this today.
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  Parkinson's is a progressive disease.
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  Let's just cut to the chase. It's a progressive disorder.
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  It's a progressive disease. And that means, right.
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  That means that what works for you right now is not going to
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  work for you down the road. Now, I don't know if it's going
• 6:50
  to be a year from now. It could be 6 months from now,
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  could be 3 months from now, could be a month from now, could
• 6:54
  be 5 years from now. But as your Parkinson's
• 6:57
  progresses, your medication needs to evolve with it and
• 7:01
  progress with it. Your dose will likely increase
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  with as your Parkinson's increases, right?
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  And you may have to shift your timings.
• 7:09
  You know, I talked about this in my medication video that I said
• 7:12
  like I had to decide whether I want to take more levodopa
• 7:15
  because I was taking at the time, I was thinking every four
• 7:17
  hours, so I was going to take more levodopa every four hours
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  or did I want to take a little bit less, a little bit less,
• 7:25
  right. So every three hours for me, I
• 7:28
  tried to both ways. I thought, huh, I felt about the
• 7:30
  same as taking, you know, but so I thought overall I was saving
• 7:34
  myself. I was taking less levodopa in
• 7:36
  three hours than I wasn't when I was taking every four hours.
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  So we went with the three, OK, but it has to change.
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  It's not going to be the same. So no matter where you're on a
• 7:45
  journey, if you just got diagnosed and maybe you're
• 7:47
  starting off and sometimes they'll start you up with a, you
• 7:49
  know, a half a pill every four hours.
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  And then maybe in a week later, you'll go up to a pill every
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  four hours, right? And then you come back to have
• 7:56
  that check in place and see how you're feeling and where you're
• 7:58
  at. And I, I told this story I'm
• 7:59
  telling again because it's very important.
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  So I was, I was going through this journey.
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  It was like, you know, half a pill every 4, then a pill every
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  four and then a pill and 1/2 every four.
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  And he can't every time I'd phone him and I'm like, he goes,
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  OK, how are you feeling? I'm like, oh, OK, he goes, well,
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  give me a percentage like how do you feel compared to what you
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  feel would be like the best, Let's say the best is 100%.
• 8:19
  How do you feel today? I'll be like 50%.
• 8:21
  He said, OK, let's this the next week, let's go up another half a
• 8:24
  pill. No problem.
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  So I went up there half a pill. How do you feel today, You know,
• 8:29
  a week later or whatever it was, I think it was a week or two
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  weeks later. You know how you feeling right
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  now? Well, you know, I'm feeling much
• 8:35
  better. You know, I'm about, I don't
• 8:37
  know, I'm going to say about 75% he goes, OK, 70%, that's getting
• 8:39
  better. Let's go up another half a pill
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  or it was a pill or I can't remember.
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  Anyway, I went up to that dose to and all of a sudden I was
• 8:47
  like, man, I felt, I mean, I felt like I could run a
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  marathon. I was just like, boom, there was
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  stiffness. I you know, I take it in the
• 8:53
  morning. I was, it was always crap in the
• 8:55
  morning no matter what. But I, once I took my first
• 8:57
  dose, about 30 minutes later it's, I've got this 30 minute
• 9:00
  clock, man, I take that levodopa and 30 minutes later it's like
• 9:03
  revolutionary for me. So 30 minutes after that first
• 9:07
  dose, I'm like, oh, wow, look at this.
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  My toes straight, wow, straight toes.
• 9:11
  My hands are straight and calm and my body wasn't curled.
• 9:17
  I kind of got up like, oh man. And I'm like, this is amazing.
• 9:21
  Like I felt so good. I was so excited.
• 9:23
  I didn't wait for him to call me this time.
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  I phoned him and I'm like dude, doc, doc, doc, dude, dude,
• 9:28
  doctor, dude. I'm like, doctor, listen, you
• 9:31
  never believe this. If you did it, man, I'm like
• 9:33
  saying to the doctor, you did it.
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  You got the this is amazing. I fell 100%.
• 9:37
  And he said that's great. He says, OK, now I want you to
• 9:41
  cut back half a pill. Back off of that.
• 9:43
  I said pardon and you're like take half a pill off.
• 9:46
  I'm like, why we're here. I made it, I feel great.
• 9:50
  And he says, I don't want you to feel great.
• 9:52
  I want you to feel good. Like why?
• 9:54
  Because again, I want the least amount of levodopa in your body
• 9:57
  right to for the longest amount of time.
• 10:00
  So he's I want you to always feel good, like you're good.
• 10:03
  You're not going to lack you're going to be able to get through
• 10:06
  the day. You're going to do the things
• 10:07
  you want to do today. That's where you want to be, not
• 10:09
  want to be for, I guess. And, you know, again, I tell the
• 10:12
  story and I was so mad. Like I was just like, why?
• 10:16
  That's not fair. It's not fair.
• 10:18
  Why can't I be like everybody else?
• 10:20
  Why can't I feel great today? You know, why can't I be great?
• 10:25
  I mean, I'm great. Why can I feel great?
• 10:30
  And now I look at myself 15 years later and do I have, you
• 10:36
  know, some some some dyskinesia? Absolutely.
• 10:39
  I haven't. And I can let it RIP today
• 10:40
  because it really wanted to run around, run around today.
• 10:43
  I was really circling. I was doing my thing.
• 10:44
  I must have banged my microphone 17 times earlier before I
• 10:47
  recorded and I was waiting for my 11 dope to kick in.
• 10:50
  So you know, I got it, but I manage it okay.
• 10:56
  I manage it. So let's repeat a couple of
• 10:58
  things here. Your medication needs will
• 11:01
  evolve, right? Your dose will likely increase.
• 11:03
  It's gonna increase, right? And your timings may shift.
• 11:05
  And that doesn't mean you're doing something wrong.
• 11:07
  It means the disease is doing what it does and you're
• 11:09
  adapting. So the best thing you do is stay
• 11:12
  tuned into your body, right? Like, just like the The Last
• 11:15
  Podcast, listen to your body and stay tuned in, right?
• 11:18
  And be honest. Stay honest and stay in
• 11:20
  conversation with your doctor. OK, so let's look at some signs
• 11:23
  that you might be taking too much levodopa.
• 11:25
  OK, so let me walk you through the top signs that I personally
• 11:28
  experience or I've seen in the community that are red flags or
• 11:31
  could be red flags that you're taking too much levodopa and
• 11:35
  that's dyskinesia. So that uncontrollable moment,
• 11:37
  right? It's like that rolling, like
• 11:38
  you're rolling. It's not a shake.
• 11:40
  It's like you're rolling, things are rolling, you know, that type
• 11:42
  of thing. Your limbs or your head start
• 11:45
  twitching or swaying, you know, usually at your peak, right?
• 11:48
  So when you're at that peak dosage of what you're taking, if
• 11:52
  all of a sudden you're just things are going and you're just
• 11:54
  now you're you're doing a lot of this that that's to me when I
• 11:58
  started doing this all the time, every time I take my levodopa,
• 12:01
  then I cut it down a little bit. And once I cut it down, I
• 12:04
  realized I wasn't doing this as much, which was good.
• 12:07
  So again, that's the one thing that you can look at like, you
• 12:12
  know, my foot once went into a full rhythm section at an inner
• 12:14
  table and it wasn't even tapping along.
• 12:16
  It was like I was just trying to sit still and I couldn't move.
• 12:18
  Like my legs, my feet were just going crazy.
• 12:21
  And that's what I knew I was like, OK, this is a little too
• 12:23
  much. We started cutting it back.
• 12:25
  Another thing that if you know, could be a sign that you're
• 12:27
  taking too much levodopa is hallucinations or confusion.
• 12:30
  OK, one time I thought Carmen was handing me pancakes and she
• 12:33
  was actually handing me the TV remote, like, right there.
• 12:35
  Like, whoa, right. And not dangerous, but a major
• 12:38
  signal that I needed to recheck my meds.
• 12:41
  OK, So again, those delusions are confusion.
• 12:45
  Talked about this a lot, too. Impulse control issues like late
• 12:47
  night shopping, overeating, obsessive behaviors.
• 12:50
  You know what I'm talking about. Obsessive behaviors, right?
• 12:52
  And they're not just quirks, right?
• 12:53
  They're not quirks like they can be side effects, especially when
• 12:57
  you're over stimulated with dopamine.
• 12:59
  So just watch for those things. And again, that could be a lot
• 13:01
  of those add to medicines, right, Primaprixile things like
• 13:04
  that that could be doing that. But you know, if you are feeling
• 13:07
  that you're out of control, right, that you're getting
• 13:10
  compulsive and obsessive and you know, you're you're if you know
• 13:13
  what, I don't have to tell you what it is.
• 13:14
  We're all adults here. But if you're getting into that
• 13:17
  spot, it could be a sign that you need to either pair down
• 13:20
  something or slow down on on your doping and check it out.
• 13:23
  And again, what's the worst thing that's going to happen if
• 13:25
  you try, right? What's the worst thing that's
• 13:27
  going to happen if you take one less levodopa at at one time and
• 13:31
  you're like, oh, maybe a little bit more stiff, right.
• 13:34
  OK, what's what do you take one more extra levodopa?
• 13:36
  Like is this the worst thing that's going to, or maybe you're
• 13:38
  going to see pancakes. But again, it's worth a try.
• 13:42
  And don't forget it comes back down, OK?
• 13:46
  One of the other things that I've experienced a lot when I
• 13:47
  knew I was taking too much was that orthostatic orthostatic
• 13:50
  hypertension. I think that's how you spelled
• 13:52
  orthostatic hypertension, which is the dizzy spells, right?
• 13:55
  Dizzy. Let's just talk like, let's talk
• 13:57
  normal dizzy spells, right? So if you take if, if if you
• 14:00
  take a dose and you feel light headed, like when standing, that
• 14:03
  could be a blood pressure drop caused by too much all at once.
• 14:07
  So these are another signs that we might be taking too much.
• 14:09
  Could be just, can you just be every time you're just like, I'm
• 14:12
  ready to fall out, ready to fall out, blood pressure drop, right?
• 14:15
  And then this one, it was really wild for me too, is sleepiness
• 14:18
  after I took my meds, right? I called it the levodopa slam,
• 14:23
  right? I'm having the levodopa slam.
• 14:25
  I take it 30 minutes later, I'm feeling good.
• 14:28
  I'm certain like it's coming, it's kicking in, it's kicking
• 14:30
  in, I'm feeling good. And then 45 minutes after that,
• 14:32
  I'm out cold. Like I'm out cold.
• 14:34
  And if it's happening consistently, that may mean that
• 14:37
  your peak dose is hitting too hard too fast.
• 14:41
  OK, so again, you're looking for that peak dose, right?
• 14:45
  What do they mean by peak dose? OK, so figure out your peak,
• 14:50
  where your peak times are in your dosing.
• 14:52
  So if you take your medication every three hours like me, so I
• 14:55
  take my my medication every three hours, OK, And I know it
• 14:59
  takes 30 minutes to kick in. So at 30 minutes, right to kick
• 15:02
  in, and I know it's starting to wear off at the three hour mark,
• 15:04
  what the peak is like right in the middle.
• 15:06
  So whatever that middle spot is for you, that's that peak dose.
• 15:09
  That's when the, if you're taking too much or too little or
• 15:12
  sorry, if you're taking too much, that's when the major
• 15:16
  signs are going to happen, right?
• 15:18
  That's you're taking too much lot or that everything's going
• 15:20
  to kick in. That's kind of where it's going
• 15:21
  to be. It's going to lead up to, but
• 15:22
  that's the main spot you want to look for.
• 15:25
  And then, you know, if you are a regular of this podcast, you
• 15:28
  know what we do next? We journal this down, we write
• 15:30
  it down. We're like, hey, at this time,
• 15:33
  after this dose, this is how I was feeling.
• 15:35
  I feel dizzy again. I wanted to pass out, do it
• 15:38
  again. It happened again.
• 15:39
  It could be a one off. So I don't do 1 offs, right?
• 15:43
  I watch the one offs, I listen to my body for those one offs.
• 15:46
  But now when it's a habit, every time they do this, this happens
• 15:50
  or every second time or even every second time is enough.
• 15:52
  So I realized that OK, you know, it's becoming a pattern now I
• 15:56
  need to look at it, right? So you have to be like you're,
• 16:01
  you're the one living in your body.
• 16:03
  Think about this. You're the one living in your
• 16:05
  body, not your doctor. Your doctor brings the medical
• 16:07
  knowledge, but you need to bring the lived experience and
• 16:10
  together that makes the team right?
• 16:12
  So speak up, ask questions, track how you feel and if
• 16:15
  something feels off, don't settle.
• 16:17
  Stop settling. If you're just trying to
• 16:19
  survive, then you're not you're if you're not trying, if you're
• 16:23
  not just trying to survive, you're trying to function, to
• 16:27
  live your life, right? Don't just try to survive.
• 16:30
  Don't just try to survive. Try to function, to live your
• 16:34
  life, to be there for your family, to do the things that
• 16:37
  matter, right? More isn't always better, but
• 16:41
  less isn't noble if it leaves you struggling.
• 16:44
  The goal is to function. The goal is freedom.
• 16:47
  And I want you to be free. Hallelujah.
• 16:50
  Somebody give me an Amen for that.
• 16:52
  Hey, listen, if this episode resonated with you, I'd love to
• 16:55
  hear about it in the comments. Here's what I want to hear.
• 16:57
  What has your levodopa journey been like?
• 16:59
  Have you ever had to adjust or advocate for a better dose,
• 17:03
  Right? When was it?
• 17:05
  Did you have to advocate? You have to say this is what I
• 17:07
  need to try. I need to try this.
• 17:09
  You need to be your manager. You're the manager.
• 17:12
  You got to manage this thing, man, right?
• 17:14
  You check in with the doctor, Here's what's happening.
• 17:16
  This is what's happening. Here's what I'm thinking.
• 17:19
  I should maybe try a little bit more.
• 17:20
  He'll say, OK, they're he or she, let's try it out.
• 17:22
  But you run to see how you're doing.
• 17:24
  It's not. Remember if you watched the last
• 17:26
  episode, maybe haven't go back and watch it.
• 17:28
  There is no maximum dose. So you try little bit, little
• 17:31
  bit, little bit until it works better.
• 17:34
  OK, Why am I saying all this? Why am I looking harsh?
• 17:37
  I'm getting mean. It's because I love you because
• 17:39
  I am with you, because we are in this together.
• 17:42
  We all got this any disease, let's just be honest got we got
• 17:47
  it. But let's try to live the best
• 17:49
  we can and let's fight for ourselves and fight for each
• 17:51
  other and become a a voice, right?
• 17:54
  So if you like that, if you were part of that, you want to be of
• 17:57
  this, you want to go deeper than this.
• 18:00
  I got this inner inner circle right, live calls.
• 18:04
  It's like a support group. We do monthly calls and we have
• 18:06
  a community where we post things, we can talk, we can help
• 18:08
  each other, and there's a link in the description phone.
• 18:11
  That's it. I want to thank all of you, each
• 18:13
  and everyone of you. Thank you for watching or thank
• 18:15
  you for listening and listen. I'm going to thank you in
• 18:18
  advance for this. Thank you for being your own
• 18:21
  best advocate and I'll see you in the next episode.
• 18:33
  Parkinson's may be part of your life, but it doesn't get to
• 18:36
  define it. Thanks for listening to Living
• 18:39
  with Parkinson's, the good, the bad, and the reality.
• 18:43
  If this episode moved you, helped you, or reminded you
• 18:46
  you're not alone. Share it with someone who needs
• 18:49
  to hear it. Want to go deeper?
• 18:51
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 18:55
  community, and a Direct Line to Bryce.
• 18:58
  You'll find the link in the show notes.
• 19:00
  Until next time, keep showing up and keep doing life today.