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Transcript

Parkinson’s Medication: 7 Levodopa Questions Every Patient Eventually Asks · Living with Parkinson’s | Bryce Perry

• 0:00
  You know, with Parkinson's, medication timing isn't just
• 0:03
  important, it's the whole game. And when your timing is off, the
• 0:08
  whole day gets thrown off. And after last week's video on
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  medication timing mistakes, you all flooded the comments with
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  some incredible questions, honest questions, frustrated
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  questions, and some questions I wish I had asked 10 years ago.
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  So today we're digging into the seven best levodopa questions
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  that came straight from you and stick around to the very end
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  because today's Bryce ISM is actually 2 lines that go
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  together. One's going to hit you in the
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  heart and the other hits you right in the funny bone.
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  And I'm telling you, you're going to love them.
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  Welcome to Living with Parkinson's, The Good, the Bad
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  and the reality. Real talk, real life, real
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  community with Bryce Perry. Let's begin.
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  Hey everyone, welcome to the to the broadcast.
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  I want to thank my loyal viewers viewers for coming back.
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  And if you're new here, I'm Bryce and this is living with
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  Parkinson's, the good, the bad and the reality.
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  Now this channel is all about providing strength, hope and
• 1:10
  support to individuals living with Parkinson's and their
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  caregivers. And we talk about real life,
• 1:16
  real challenges, real victories, and we do it together.
• 1:20
  And that's, and if that's what you're looking for, make sure to
• 1:23
  hit subscribe and come along. OK.
• 1:25
  But before we jump in, I want to say a huge welcome to all the
• 1:28
  new folks here. You know, over 2500 of you
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  subscribed in the last couple of weeks, which honestly blows my
• 1:35
  mind. And I'm so thankful and thank
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  you. Thank you truly.
• 1:38
  You know, this is more than a channel.
• 1:40
  This is a worldwide community. We have over 200 YouTube members
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  now, and our inner circle, which is a private community, is
• 1:47
  already closing on 100 members. So if you just subscribe, that's
• 1:51
  Step 1 and I promise you will never have to face Parkinson's
• 1:55
  alone again. Step 2 is participating in the
• 1:59
  community and you can do that right now by commenting on this
• 2:01
  video, responding to other people's comments and sharing
• 2:05
  your tips and your experiences and hacks because those comments
• 2:08
  are changing lives. People tell me that all the time
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  and Step 3 is going deeper inside the inner circle.
• 2:16
  Now as I said, we just crossing over that 100 member mark and
• 2:20
  new groups are opening solo groups, care partner groups and
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  young onset groups, newly diagnosed groups.
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  They're coming and it's global. The inner circle is global.
• 2:31
  I have so many questions about time zones and you know, not
• 2:34
  being able to fit in. But you know what, there are
• 2:36
  people from across the world and so you are welcome no matter
• 2:40
  where you are on in the world. And you know what, to celebrate
• 2:43
  hitting our 100th Inner Circle member, I'm giving away 2023
• 2:49
  month Inner Circle memberships for free.
• 2:52
  Now all you have to do is click the link in the description
• 2:54
  below and the 1st 20 people who respond, you win it
• 2:58
  automatically. You'll have the link and come on
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  in. All right, let's dive in.
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  OK, First off, thank you for these incredible questions and
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  keep them coming. Again, there was over 45
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  questions in the last episode or last week's episode, and I read
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  every single one. And these questions help shape
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  future videos. So if you want your question
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  featured in another video, make sure you hit that like button
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  right now and drop your medication questions in the
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  comments. And again, if there's enough
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  questions on the same stuff, I definitely will make a video
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  about it or update it. But here is question number one.
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  OK, And this is from at Henry at Henry B6738.
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  And the question is, can you take levodopa at night?
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  I've been taking mine every two hours through the night.
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  Well, Henry, thank you for your question.
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  And the short answer is yes, you can take levodopa at night and a
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  lot of people do. But here's the thing, everyone's
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  routine and patterns are different.
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  For me personally, I take, I take some controlled release at
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  night, one or two tablets just before I fall asleep and that
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  gives me a smoother line through the night.
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  And honestly, because the truth is honest truth is if I wake up,
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  like if I wake up to take medication or set an alarm to
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  take medication, I will never get back to sleep.
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  And I have a hard enough time falling asleep, so I'm not going
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  to wake myself up. So for me, again, I, I've just
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  started in the last year or so, or nine months, 9 to 12 months,
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  I just start taking the extended release through the night.
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  And it's working really well for me, you know, but a lot of
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  people do, a lot of people have that keep that regular rhythm
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  through the night. They set an alarm or their body
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  just wakes up and they take it. Now, having said that, if I have
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  to, if I wake up in the middle of night, because OK, let's be
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  honest, right, at our age, a lot of there's a lot of you know,
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  night time runs to the restroom. So if I do wake up, because I
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  have to go to the restroom or go to the bathroom or whatever, I
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  will take some if it's been my, my if it's been over my 2 hour,
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  I got to take my bills every two hours and 45 minutes, my
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  levodopa. So if I wake up in the middle of
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  night and it's been more than the two hours or 45 minutes, I
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  will take a dose for sure. But again, I won't wake myself
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  up to do it. And the key, but here's the key,
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  here's the key. He is knowing what kind of night
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  time issues you're trying to manage.
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  OK, so is it stiffness or cramping, tremor, pain,
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  restlessness, you know, and, and timing wise, controlled release
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  could be a great option for night time because it's designed
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  to last longer but kick in more slowly.
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  OK, so if you're watching this comment below, do you take night
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  time doses? What works for you?
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  Someone will be reading this and they might find the exact tip
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  that they needed from you. So let's get involved everybody.
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  OK? Now Speaking of timing choices,
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  the next question is perfect. And this question came from at
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  Mike Purcell 24. And the question is, what is the
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  difference between extended release and immediate release
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  timing? And should I take them together?
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  And that's a great question, Mike.
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  See, immediate release kicks in quicker, obviously, right?
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  You feel it, you notice it, but it wears off quicker too.
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  Extended release or controlled release, It releases slowly over
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  time. You don't get that same quick
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  on, but you get a more steady stream of medication.
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  And a lot of people actually use both.
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  For example, immediate release first thing in the morning,
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  controlled release at night, or a mix to smooth out the daytime
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  wearing off. It's all about how your body
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  responds. You know, the, the immediate
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  release usually lasts 3 or 4 hours for most people, OK, The
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  controlled release usually lasts between 6:00 and 8:00 hours for
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  most people. But it all depends on your
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  stomach emptying, your diet, your gut mobility, your timing,
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  you know, Parkinson's fix all of that.
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  OK, So if you're mixing immediate release and, and the
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  slow release, let me know in the comments what works for you.
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  OK, Community wisdom makes a huge difference.
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  Again, I'm just one person and we all have different schedules
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  and we all have different things and ways that work for us.
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  So in the comments, if you're, if you're mixing both, what's
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  your schedule look like? And, and others can read it and
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  see what matches with theirs as well.
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  OK, and again, let me let me clarify this really quick.
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  I'm not a doctor, otherwise it'd be Doctor Perry.
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  But no, I'm just teasing, but I'm not a doctor.
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  This is my experience of living with Parkinson's now for over 15
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  years of being on levodopa now for like, you know, 15 years.
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  So everything's come from my experience and of course my work
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  in the Parkinson's and advocacy, you know, across the world.
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  So I do talk to a lot of doctors, but anytime you want to
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  make a change, right, add, subtract, do something
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  different, make sure you talk to your neurologist, your doctor,
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  your prescribing Dr. OK, All right, so there that was my,
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  that was my little just in case I was like, you know, don't go,
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  OK, don't, don't go after me. But anyway, now not all dopamine
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  changes go smoothly. OK, which leads us to our next
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  question. Here we go.
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  Question #3 So it's from at John Lowe at 3015.
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  And it was this. Why does adjusting my dose give
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  me dyskinesia? Is it normal, John?
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  Yes, it is very normal. Dyskinesia usually happens when
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  dopamine levels spike above your body's comfort zone.
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  OK, so if levodopa hits too fast or too high, your brain goes
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  whoa, right? An extra movement start kicking
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  in, and sometimes raising the dose even a little can trigger
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  it. Sometimes changing timing can,
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  sometimes even changing what you ate that day can change it up
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  that fast. So as Parkinson's progresses,
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  your dopamine receptors become more sensitive, right?
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  So the wiggle room gets smaller, but here's the good news.
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  Dyskinesia does not mean you're doing anything wrong, right?
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  It means your brain is reacting to the amount of dopamine
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  available at that moment. So if you're experienced, if
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  you've if you've experienced dyskinesia, drop the word
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  movement in the in the comments. So people know that they aren't
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  the only ones having to deal with this.
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  All right, but what if your timing changes everyday?
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  Kristen asked exactly that. This was at Kristen H, 02 at
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  Christian age 02. And she said this my symptoms
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  vary throughout the day. How do I time my meds when my on
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  times are unpredictable? Well, Kristen, welcome, welcome
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  to the club that nobody wants to join.
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  But since we're here, we might as well make the best of it.
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  And you're right now you're talking about the snow Fight
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  Club, right? It's just down the corner here,
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  just around the bend. This is one of the hardest parts
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  of Parkinson's. Symptoms move around like
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  they're on their own schedule, right?
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  And here's a few things that can help.
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  Consistency. Same time every day.
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  Don't chase your symptoms. Don't chase your symptoms.
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  The more you get consistent with your medication timing, the more
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  consistent those symptoms will come.
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  Tracking. Even one week of tracking can
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  show patterns you never saw before.
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  Timing, Sleep, stress, meals, hydration, they all matter.
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  OK, wearing off if you're on time is shrinking.
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  That's a sign to talk to your doctor.
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  And I'm going to say it like this, plain as I can possibly
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  say it, Parkinson's is unpredictable.
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  OK, It is. It's completely unpredictable
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  and it's inconsistent. But I can tell you this, and
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  this is again, after 15 years of tracking this stuff, you can
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  start proving a lot of this stuff out what seemed like
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  completely different random times that you're offs and ONS
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  are hitting. If you start really tracking
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  again, tracking the right way, you'll start seeing that those
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  inconsistencies actually have some reasons behind them.
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  And once you find those reasons and those inconsistencies and
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  you do your tweaks and some changes, it gets more
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  consistent, OK? And it gets a little bit easier
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  and things will come in a little bit the same time.
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  I get just, it just works. OK.
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  Now how about this comment below if you want a full video just on
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  symptom tracking. I know I've talked a lot about
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  it, but if you want me to really go deep into my how I track it,
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  what I do, how I do it and what I write down, then all you have
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  to do is just put, you know, symptom, just put tracking, just
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  put tracking right, Hashtag tracking, hashtag tracking.
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  And if there's enough of you that want that, I will go ahead
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  and I'll make that for you because I, I, it's one of the
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  biggest, one of the biggest things that I do right, One of
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  the only things I do right. How about some, some would say.
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  But it is one thing that I, I actually think a bit of pride in
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  because I've, I've been really diligent at it.
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  And I believe it's why I'm doing so well, at least in my opinion,
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  I'm doing well. OK, hashtag.
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  What do I say? Hashtag Track, track, track, Mr.
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  track, whatever, anything, anything with track and I'll,
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  I'll get it. OK, OK.
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  And Speaking of timing mistakes, this next question, this one was
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  huge. It's a huge, huge question.
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  Question #5 And this is from at RKTN 1L, no TN one NL.
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  If I take my meds early, will it cause side effects or make them
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  wear off faster? Such a good question.
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  OK, here's the truth. Taking your dose early can
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  shorten your dosing window. It can make your whole day feel
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  like you're chasing your medication.
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  OK? Early doses can create, you
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  know, quick peaks, faster wearing off time.
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  Yeah, more ups and downs and yeah, sometimes dyskinesia.
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  But. But remember this.
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  You're human. Symptoms hit hard.
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  We all take meds early. Sometimes The goal is to keep it
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  from becoming a pattern. OK, and and how about this?
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  Have you ever taken an early dose out of frustration, hit the
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  like button? So I know I'm not alone there
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  either. And that's interesting.
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  It's such an interesting question.
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  But yes, don't like, don't become a chaser.
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  And I've talked about that in the video in the last episode.
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  Do not chase the dose, OK. But again, it's just all about
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  consistency that sharpen the consistency, you'll sharpen
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  those things. OK, now let's talk about
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  something newer and really interesting.
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  OK, new and interesting. So question number six was from
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  at dot Gomez at 5168 said, I heard about a new pump delivery
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  method. Is this available yet?
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  And how does timing work? And yes, you are talking about
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  Vilev. OK, Vilev, this pump delivers
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  levodopa continuously throughout the day.
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  Instead of big peaks and valleys, you get a steady flow.
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  It's like turning a roller coaster into a smooth train
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  track. Timing becomes more stable,
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  there's less wearing off, fewer pills and for people with very
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  unpredictable on times, it can be life changing.
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  Now, if you're watching this and you've tried this pump or you're
• 14:04
  considering 1, you know, let me know, let everybody know about
• 14:06
  your experiences in the comments.
• 14:08
  I know there's a lot of you in the community that have have are
• 14:11
  on, they're doing like Vilev right now.
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  I mean, there are some drawbacks or some goods, some bads.
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  I mean, there's, you know, risk of infection and things, but I
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  would highly recommend it. If you are trouble having
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  trouble with your dosing or you're at a stage where oral,
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  like the oral medication is just not working for you, you're
• 14:28
  you're missing your doses, you're up, you're down, you
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  cannot figure it out. Violet might be a really, really
• 14:33
  good option for you. So definitely talk to your
• 14:35
  doctor about that. For sure.
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  I'll be diving into some more of these like for the the pump and
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  and DBS and some other some other therapies.
• 14:45
  I'm going to be there's an episode coming up rather
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  quickly, pretty shortly you'll see coming up on some of this
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  new stuff and how it works. Good, the bad things to think
• 14:53
  about and when you should look at doing it.
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  OK, So hopefully that answers your question.
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  OK, next question question #7 is from at Ed Peddler at Ed Peddler
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  at 476, at Ed Peddler 476 and it says this does exercise affect
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  when I should take my medication?
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  Should I time it around workouts?
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  OK Ed, awesome question. Exercise and medication work
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  together. Movement boosts dopamine
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  deficiency and levodopa boost your movement.
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  So most people feel best when they take levodopa probably 30
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  to 45 minutes before exercise. And that's usually like when
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  everything starts to peak when it starts kicking in your
• 15:36
  peeking because exercise can also increase blood flow and
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  help you get more from your medication.
• 15:41
  OK, but the other thing to think about this is too is that
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  physical activity, as I said in the last episode, and again, if
• 15:47
  you haven't seen the last episode, make sure you check it
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  out because it's I go deeper in a lot of these things.
• 15:51
  But physical activity for some and if if not all can burn
• 15:56
  through your levodopa quicker. OK, So you might have to look at
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  maybe, you know, for me personally, when I work out, I
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  when I exercise, when I'm doing physical things around the
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  house, I actually reduced my timing between doses because I
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  go my my, my meds just they run out fast.
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  OK, so if you're experimenting with this, drop your workout
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  timing in the comments again, please.
• 16:19
  If you're have you got some of you been doing that, you've
• 16:21
  experimented with it, let people in the comments, you know,
• 16:23
  because someone out there I'm sure will benefit.
• 16:26
  All right, well, it's about that time.
• 16:27
  You didn't think I was going to miss Carmen's care partner
• 16:29
  Corona, did you? All right, I asked Carmen, you
• 16:32
  know, when you my medication time timing is off and what do
• 16:36
  you notice first? OK, when it's off first, what do
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  you notice first? And her answer was perfect.
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  She said that. She said she notices the
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  stiffness before I do. She hears changes in my voice.
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  She sees my face start to kind of freeze up a bit before I'm
• 16:49
  even aware of it. She sees timing issues in my
• 16:51
  body language long before I feel it.
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  And for care partners watching Carmen wanted to say this.
• 17:00
  You're not failing if you feel confused or overwhelmed.
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  Medication timing is complicated.
• 17:06
  Bryce makes it sound easy, or at least thinks it's easy, but he
• 17:10
  has many, many years experience at this.
• 17:13
  The best thing you can do is pay attention to patterns and gently
• 17:16
  share what you notice. You're part of the team, right?
• 17:19
  Not the solution alone. So when you're looking at
• 17:24
  timing, you can offer your hints and suggestions.
• 17:27
  I also hop in and help wherever Bryce needs me to.
• 17:30
  So, you know, Carmen always knows how to say exactly what
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  people need to hear, doesn't she?
• 17:36
  That's awesome. Well, listen, that locked us
• 17:40
  right into the racism of the episode.
• 17:43
  And if you're ready for this, here it is.
• 17:47
  I think it's a really good one. So if you're ready, here it
• 17:49
  comes. OK.
• 17:53
  Actually, you know what? I actually have two this week.
• 17:55
  I always forgot I have two because I couldn't pick one.
• 17:57
  I liked them both and I was going to use one for another
• 18:00
  episode, but I like them both. So I'm going to give you both
• 18:02
  and you maybe tell me which one you like first better, right?
• 18:05
  Is just put like Bryce ISM one or Bryce ISM 2, whichever 1 you
• 18:07
  think was better. But I like, I thought they were
• 18:10
  both good. I couldn't figure out which one
• 18:11
  to do. OK, here we go.
• 18:15
  With Parkinson's, the disease is unpredictable, so I've learned
• 18:19
  to be predictable about one thing and that's showing up.
• 18:22
  Anyway, there you go. That's number one.
• 18:26
  That's Bryce ISM number one. I think that's a good one.
• 18:29
  And here's Bryce system #2 with Parkinson's, you adjust and then
• 18:34
  you just again, and then you adjust the adjustment.
• 18:37
  It's like assembling IKEA furniture, except you're the
• 18:41
  furniture. There you go.
• 18:45
  Which one do you like better, Bryceism one or Bryceism 2?
• 18:47
  Let me know in the comments so I know which way you like me to go
• 18:50
  on these funny or straight to it.
• 18:51
  But honestly, thank you. Thank you for showing up today.
• 18:55
  It matters more than you know it does.
• 18:58
  Unbelievable. And drop a comment with your own
• 19:01
  medication timing questions on your questions or your routine,
• 19:05
  right? I read every single one.
• 19:06
  And your questions help shape all the videos, all the episodes
• 19:10
  that are coming up and hit like if this video helped you at all,
• 19:13
  Subscribe so that your question might be featured next month and
• 19:17
  share this video with somebody who's struggling with their
• 19:18
  medication schedule right now. And until next time, you know
• 19:23
  the drill. You keep showing up, you keep
• 19:26
  being real if you keep doing life today.
• 19:30
  Parkinson's may be part of your life, but it doesn't get to
• 19:33
  define it. Thanks for listening to Living
• 19:36
  with Parkinson's, the good, the bad, and the reality.
• 19:40
  If this episode moved you, helped you, or reminded you
• 19:44
  you're not alone. Share it with someone who needs
• 19:46
  to hear it. Want to go deeper?
• 19:49
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 19:52
  community, and a Direct Line to Bryce.
• 19:55
  You'll find the link in the show notes.
• 19:57
  Until next time, keep showing up and keep doing life today.