Latest / Living with Parkinson’s | Bryce Perry / My Parkinson's Medications: Dosages, Side Effects & Lessons Learned

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My Parkinson's Medications: Dosages, Side Effects & Lessons Learned · Living with Parkinson’s | Bryce Perry

0:01
They told him he had five good years left.
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That was 15 years ago. He's still standing, still
0:08
speaking, still living. This is living with Parkinson's,
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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. All right, well, welcome back to
0:32
Living with Parkinson's, the good, the bad, and the reality.
0:35
I'm Bryce. And if you're new here, this
0:37
podcast is all about honest conversations about life with
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Parkinson's, you know, sharing the highs, lows, and everything
0:43
in between. So today we're diving into
0:45
something that every person with Parkinson's that deals with at
0:48
some point, medications. When I was first diagnosed, I
0:51
had no idea how much my medication plan would evolve
0:55
over time. I thought that I'd get a
0:56
prescription, I take my pills, and that would be about it.
1:00
But as I've learned over the last almost 15 years,
1:04
Parkinson's medication is not what one-size-fits-all.
1:08
And it's definitely, it definitely is not a static plan.
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Again, I've said this many, many times, but again, progressive
1:14
disease, progressive plan, right?
1:16
It's going to keep changing. So anyway, in this episode I'm
1:19
going to share with you my personal journey with
1:21
Parkinson's medications, right? So my Parkinson medications.
1:24
So what I took in the first five years and how that changed
1:27
between, you know, years 5 and 10 and what medication looks
1:30
like now going into 15 years in. So if you've been on Parkinson
1:34
medication for a while, I'd love to hear your experience.
1:37
Drop a comment in the in the comments section below and let
1:40
me know. Let me know how your medications
1:42
has changed. Your medication has changed over
1:44
the years. But anyway, let's get into this
1:47
because this is, this is really, I get, I get so many questions
1:49
about medications. What do you take?
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You know, how much do you take? And I, I make AI make a joke and
1:56
hopefully it's, it doesn't offend, you know, it's not an
1:57
offensive type of joke. But I always say this is like,
2:01
you know, what are the first things you say to somebody when
2:03
you meet another person with Parkinson's?
2:05
There's two things that every time I meet somebody has
2:08
Parkinson's, it's like, it's like, it's almost like the
2:10
icebreaker. It's like, oh, you have
2:12
Parkinson's. So wow, OK, when were you
2:14
diagnosed or how long were you diagnosed?
2:16
And how many yellow pills do you take?
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And that's it's like a common, it's like our common ground.
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It's like our, our handshake, our like our high 5.
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It's like how long have you had it and how many yellow pills do
2:25
you take? So I will tell you how many
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yellow pills I take a day and then we'll get into it right
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now. So actually I won't tell you,
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I'll tell you at the end. But it's, it's, it's quite a
2:38
bit. It's quite a bit.
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I think it's quite a bit. Maybe it's not quite a bit, but
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it'd be cool to see how many you're taking or how many you
2:44
know you're you're on as well. So we can kind of compare notes.
2:46
But anyway, again, I want to also remind some remind you that
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again, as I said, it's not a it's not a cookie cutter here.
2:53
It's not it's not one shoe fits all kind of scenario.
2:55
So just because I take X number of pills X number of times a day
2:58
doesn't mean you have to. Maybe you take more, maybe take
3:00
less. And it doesn't mean one of us is
3:01
right or wrong. It's what works for you, what
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works with for you and your body, what gives you the best
3:06
relief of the symptoms that you need and, and can and want.
3:10
And, and so I, I caution everything that I do whenever I
3:14
think about changing medications or, or medications, when I think
3:17
about adding more medication or taking some off or taking this
3:20
quicker, sooner, longer, whatever it might be, I always
3:23
do it in cooperation with my, my movement source specialist, my
3:27
GP, my healthcare team, really. So I'd encourage you.
3:30
So anything you do today, all I can say is this is like, take
3:33
some notes because you know, the one thing that I've heard and
3:36
you know, because you look pretty good, you know, for 15
3:38
years in your, your, your symptoms are pretty under
3:40
control. And, and I'm, you know, I, I
3:42
guess I should say thanks, thank you.
3:44
Someone says, I used to get offended.
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They'll be like, you know, you look good.
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I'm like, like, no, I like what you don't think I have this
3:50
thing, I'm lying to you, that type of thing.
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But I think, I guess, you know, the reality is I should, you
3:54
know, just say, if someone says, Hey, you don't look at a
3:56
partners, I'm like, right on. Thanks a lot.
3:57
It's working anyway, anyway, let's get into this.
4:01
So again, I want to talk to you about, you know, how I started,
4:03
how many, you know what I started on what I took.
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And just so you know, so if we go back to when I was diagnosed,
4:09
so this was my initial medication plan when I was
4:12
diagnosed. And you know, when I first
4:16
prescribed medication, I started on the levodopa, carbidopa,
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right? So levodopa carb, it's what we
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call them or the Levocarve we call them.
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And so today this is kind of the size of the pill bottle that I'm
4:28
going to look at the other camera, see what I got it.
4:29
That's the type of size I've got.
4:31
So it looks like I am actually getting really low.
4:34
I'm going to actually have to, I'm going to actually have to
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get some more. And you're going to be really
4:38
careful this stuff because it's a very finite, right.
4:40
It turns into dust on the bottom if you bounce around too much
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and it melts in your pocket. I found that out too.
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So that's not a lot there. That's maybe not even a day's
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worth for me right now in this bottle left.
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So anyway, that's the levodopa carve.
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I started on the 100 by 25 MGS, right milligrams, 100 by 25.
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And so when I first was prescribed these, I was taking
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one of one pill, one of these pills every four hours.
5:07
That was my original prescription, SO1 pill every
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four hours. You know, if you're going to
5:12
hypothetically say you're up for what, I don't know, 16 hours.
5:16
So I just figured that out and it's it's not a lot, right?
5:18
I was thinking maybe 4 pills a day, if that makes sense.
5:21
And the way that I start taking my medication and the way I take
5:24
it today, even today is I don't have a prescribed time that I
5:28
take it. I take it in prescribed
5:30
durations. So again with the first
5:33
diagnosis, it was one of those pills every four hours plus I
5:39
also had a one Primaprixol, 1 Primaprixol and I took that one
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time a day. So I took it with my very first
5:50
pill, very first levodopa pill. So I took they say I wake up and
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I take 1 levodopa and one Primaprixol.
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Primaprixol they come in, you know, one of those kind of
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bottles. Primaprixol.
6:03
Yeah. And actually I got a definite.
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I actually, I want to make sure I looked it up so I wasn't just
6:08
kind of giving you like false narratives.
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And I'll put in the description as well of the video.
6:13
I'll put, I'll, I'll list them out so you can copy and paste if
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you ever want to look it up. But Primiprixal, where was I
6:20
here. Primiprixal.
6:21
Well, anyway, you know, I'll put it, I'll put it in the in the
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description. It's an antagonist.
6:25
In other words, I take it, what I, what I do is I take it to
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help my levodopa last longer, right?
6:32
So it's supposed to, it's supposed to make my levodopa
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kind of go further to get to my, you know, to try to avoid the
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off and on situation. And, you know, if you're new to
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Parkinson's or, or you have a loved one that has Parkinson's
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or you have Parkinson's and you're just maybe just
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diagnosed, you're kind of going on off.
6:47
What are you talking about? So when you're in our world,
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when you're in this world, it's, you know, we call it on off.
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So on is when your medications working just perfectly and you
6:55
feel OK, you're feeling better, your, your symptoms are under
6:58
control, you're on your medication is really working
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well and you know, you're, you're feeling, you're feeling
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decent right off is when your medication is obviously off when
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it's not working. So the reality is, is that
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you're trying to, for me personally, what I try to do is
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I'm trying not to go off. You know that that's what people
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get DBS like deep brain stimulation and things like that
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for is to, to avoid the off periods because the off periods
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are not good. They, they, they're not great at
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all. One of the big things that I
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struggled with my medication is that I would take my last pill,
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like whatever time I took my last shot of levodopa, levodopa,
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and then I'd go to sleep. So my body was getting used to
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being on levodopa or, you know, every four hours getting a dose
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of levodopa. So when I'd go to sleep, if I
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slept for 8 hours, it's like I've missed like one, maybe one
7:49
or two doses. So I would wake up with like
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fully off, like completely off. I, as a matter of fact, I, I
7:55
just do that. I wake up like almost completely
7:58
off every morning. It's, it's a, it's a struggle
8:01
for me in the morning. Takes me about 30 minutes for
8:04
my, my pills, my medication to kick in and then I can move and
8:06
move and do what I want to do. So when I first wake up, I, it's
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not like I'm getting out of bed and, and running around.
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I, I'm literally stiff, stuck, sore and, and can't really move
8:17
around that much. So that's me in the morning.
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I call myself the, the old man that the really, really old man.
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And but when that when that when the Med starts to starts to come
8:27
on, you can start feeling it right again, I've said this
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many, many times, I'll say it again, like the Tin Man.
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It's like the Tin Man. Excuse me, in the Wizard of Oz,
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when he's standing there stuck and you know, he's like can't
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move and he's just stuck. And, and then Dorothy, or I
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think it was Dorothy, Dorothy from the Wizard of Oz.
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I think it's Dorothy, right? If it's not Dorothy, correct me
8:44
in the comments, please. But I think it's Dorothy.
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Anyway, she comes over with a little oil can and she oils him
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and he slowly starts to to move and he starts to get, starts to
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release. And he's like, oh, OK, that's
8:54
like me and probably most of you when that levodopa starts to
8:58
kick in. So it's, it's, it's really good.
9:01
And, and I've said this again, is that I was really pissed off
9:05
with my movement disorder specialist when when we started
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trying to figure out what that cocktail should look like.
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So in other words, I started off with this the one pill.
9:15
And I should have said that first before the Primpixel came
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into play. I started off with the one pill.
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And what happened was I would take that pill and, and, and we
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tried it like for a couple weeks and see if it, you know, if it
9:26
made a big difference, didn't make a big difference or if it
9:28
made a huge difference. And so, you know, it was OK, I
9:31
was feeling, you know, better. And I, you know, after like a
9:33
week or two, I'd come back to the neurologist.
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We talked on the phone. So how are you feeling now
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compared to when you were in the old days, when you, before you
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started feeling the symptoms and stiffness and, and the soreness
9:44
and the pain and the, and the tremors and stuff?
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How are you, you know, how do you, how would you compare your,
9:48
how you're feeling today? So on the one pill every four
9:51
hours, I'd say I was feeling like, I don't know, maybe 50%,
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like close, maybe half of as good.
9:56
Oh, jeez, Oh my God, I'm horrible.
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It's half as good as I was before, half as good as I was in
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the past. And so he said, OK, So what
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we'll do now is we'll take that up to two levodopas every four
10:06
hours, 2 levodopas every four hours.
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So I did that, did that for like 2 weeks and I'll tell you what
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that at that time, so I'm going back 15 years ago.
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I was 40 years old when I diagnosed.
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So it's like 14 1/2 years. I'm not quite 55.
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It'll be 55 in September. So, you know, the 2 pills I was,
10:24
I actually felt really good. It was like the for the first
10:28
time I realized and you know, and you, you, you might probably
10:31
experience this. And I know that I've talked to
10:33
so many of you that have experienced this, that, you
10:35
know, when you started getting that tremor or that indication
10:37
that there was something wrong by the time you got diagnosed,
10:39
you can actually go back the years before, you know, and I've
10:42
got a video on that too, like the early signs of Parkinson's
10:45
that you might have missed, you know, that some people lost
10:47
their smell long before they were, you know, diagnosed with
10:50
Parkinson's. So I was like, I was not, man, I
10:53
haven't felt this good in my Lord, probably like 5 years,
10:57
right? And then I just just being
10:59
diagnosed. I'm like, I haven't felt this
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good in like 5 years. So I was so excited, I was so
11:03
happy. I couldn't wait to go back into
11:05
his office and go, thank you, doc, thank you, thank you, thank
11:07
you. Like, man, it's a miracle.
11:08
I, I feel, I feel like I can move again.
11:10
I feel like I can run around and go play, you know, hockey or
11:14
skate around I guess and play hockey.
11:17
And this is when he pissed me off because then he said, he
11:20
said, so how would you say you're feeling Like I'm 100%?
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I feel, I feel 100% like you have given me back my life, Like
11:26
I feel like 100%. To which he replied, OK, good,
11:30
now we're going to cut you back. And I said, what do you mean cut
11:33
me back? And he goes, I don't want you
11:35
feeling great. I want you feeling good.
11:40
I want to feel great. Why can't I feel great?
11:43
I want to feel great. No, I want you to feel good.
11:45
No, I want to feel great. We had a little bit of an
11:47
argument. I said, no, I want to feel
11:48
great. I don't care what you're saying.
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I want to feel. Why would I not want to feel
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this way? Why don't I want to go back and
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feel the stiffness again? I don't want to go back to that.
11:56
And he said, you know, the longer that the, the lower dose
11:59
that we can take, right? The lower dose you can take the,
12:02
the studies have shown that it is, it is, it is held back,
12:08
right? It's pushed back.
12:10
These side effects of the medication.
12:12
And one of the big side effects of levodopa, as I'm sure you've
12:16
heard of is dyskinesia, like those involuntary movements of
12:19
your, of your body swaying, right?
12:21
So you know when, if you've either had taken too much
12:24
levodopa or after you've taken levodopa for quite a while.
12:27
And my understanding is about 3 to 4 years of taking levodopa is
12:31
when you should start or should start when people start to kind
12:34
of really sense these side effects.
12:35
But that dyskinesia is that, that, that swaying movement,
12:38
right? Like the involuntary, you don't
12:41
want to do this, but you're doing it.
12:42
You're moving around a lot. You're kind of go back and forth
12:45
and you know, it's involuntary or, you know, you got some tics
12:48
and tricks and, and that, that is dyskinesia.
12:50
And that's a side effect of levodopa.
12:52
And again, normally three to four years.
12:57
So I'll say this to you, if you look at me right now, not bad,
13:02
kind of still right? That's 14 1/2 years on levodopa.
13:09
OK, so now I thank him. Now I'm like, thank you.
13:13
If that's what it was, then thank you.
13:14
If that's kept these side effects, you know, minimal or
13:17
down, I'm not saying they don't have them.
13:18
Sometimes I, I start to sway a bit and you'll see it.
13:20
I'll start to kind of move, but I'm not aggressively moving.
13:23
The only time I've ever really felt that really, really moving
13:26
like wildly out of control is when I've taken too much
13:28
levodopa. And then you might ask, well,
13:31
how can you take too much? You were told to take, you know,
13:33
your two pills or whatever it was.
13:35
And I'll get into that a little bit later.
13:36
So I'll tell you a little bit about that experiment and, and,
13:39
and how that also works and what I do in some cases.
13:42
But anyway, so, so we cut them back to 1 1/2.
13:46
So I so that was it. That's where I sat.
13:48
And then we added the, the, the Primaprixole to it to extend it
13:52
as long as I could to get to the four hours.
13:54
So, so for my first 3-2 years, I took 1 1/2 levodopa and it's the
14:01
100 / 25 I took that, you know, 1 1/2 every four hours and 1
14:07
pramipexole. And I also at the time was
14:11
taking another pill that he had subscribed, prescribed that my,
14:17
my movement sort of specialist prescribed and, and that was for
14:20
depression and anxiety. So I guess my depression had,
14:24
you know, I was telling him I was feeling slow and weak and
14:26
tired and unmotivated and, and that's when I started on my on
14:29
that medication for that at the same time.
14:32
And that was called actually I was, I wasn't not paying
14:34
attention there and I was that was called Citraprim, sit, sit,
14:38
citraprim, Citraprim. So I take started taking one of
14:41
those in the morning as well. So literally I was taking 1 1/2
14:45
to 3 1/2 pills when I first woke up and then I was taking 1 1/2
14:50
every four hours. Fantastic, great.
14:53
And, and that's kind of how I started.
14:55
That was my, my journey of starting and you know, the goal
14:59
early. And I, and I said this earlier,
15:01
but the real goal was to, to, to control my symptoms, right?
15:04
The stiffness, my slowness and those I had mild tremors, right?
15:08
But it was really the stiffness and the slowness for me that was
15:11
my goal. I needed, I wanted those to be
15:13
under control, you know, and in those early years, like the
15:15
medication worked really well, like my symptoms were manageable
15:18
and I felt like I had things under control.
15:22
Stay with us, we'll be right back.
16:12
The medication didn't last as long or I start having those off
16:15
periods before my next dose was due.
16:18
So again, I, I would normally notice I would get to like 3 1/2
16:23
hours, you know, almost to like, you know, you know, 3 hours, 45
16:27
minutes and I start feeling tired.
16:29
I start getting some brain fog. I start kind of, I wasn't
16:34
stirring then yet, yet I wasn't my, my, my, my voice was under
16:37
control back then, but it was really more the brain fog.
16:40
I started getting a headache. I feel, start feeling kind of
16:42
mopey, if that's the right word to say mopey down mopey.
16:45
And, and it was getting around that 3 1/2.
16:48
Probably around that 3 1/2 hour mark is when I started really
16:52
starting to feel it. So what what I did, what did I
16:56
do so well? Basically my doctor increased
16:59
the dosage, right? And that worked for a while.
17:03
But I also started experimenting with the timing, like learning
17:05
when to take the meds, like with you know what, like when, when
17:08
to take them and then how to adjust them around my schedule.
17:11
And that was massively huge for me.
17:14
So at that point we transitioned and I went to two.
17:19
No, I actually ended up going to 3 pills every every four hours.
17:23
So I went, I actually jumped from 1 1/2 of the levodopa to
17:27
three levodopa every every four hours.
17:30
And, and, and, and that is kind of what I needed.
17:33
That's what I and I, I would get there.
17:35
I wasn't quite getting to the four hours, but I was close
17:36
enough. So if I had to be stiffer, you
17:38
know, put up with a feeling like a little bit for 10 minutes, I
17:41
was OK with that, right. But the bigger thing, the bigger
17:45
thing that I noticed is that those things were happening to
17:48
me like that stiffness, the off periods that the, the shortest,
17:51
you know, the, the time frame in between being like not making it
17:55
as far as I was making it was really around my schedule.
17:58
So for me personally, when I'm doing something physical, so if
18:01
I'm going to cut the grass, I, I, man, I work through that
18:05
levodopa, man, I, I burn it off fast.
18:08
So when I'm going to, you know, do something physical to cut the
18:11
grass, I'm going to go do something work out, I'm going to
18:13
go and I'm helping somebody move.
18:15
I, I add 1 pill a day, I add 1 pill to every, every, every dose
18:21
just in, just monetarily in that time.
18:23
And I do that or if I'm going to speaking engagement in it, I
18:26
know that I'm going to be, you know, going off.
18:28
I know I'm getting closer to my nerves, my stress.
18:31
Like, you know, you realize, right, that when you're stressed
18:33
out, So if you're stressed out, your nerves, your anxiety, your
18:36
stress, it's accentuates your, your, your, your symptoms,
18:39
right? So you're going to, I shake
18:41
more, I tremor more, I'm more painful.
18:43
I'm more like tired of everything else when I'm more
18:45
stressed out, when I don't have the right time and, and sleep.
18:48
So, so many things go with your medication.
18:50
So I had to Start learning in that probably around like that
18:53
around year 4 and five, I was like, OK, my sleep's really
18:56
important. I need my sleep and then I need
18:58
to regulate my sleep and I need to watch what I eat.
19:00
And you know, protein, for example, people say you avoid
19:03
protein. I'm like, what are you talking
19:05
about? I love steak, I love chicken.
19:07
I'm not, I'm Parkinson's man, like don't throw more crap at
19:10
me, right? So I'm going to eat that stuff.
19:11
But I just, again, I, I tend to take like if I had a, if I'm
19:15
having steak, I'll add a pill or half a pill to it, just whatever
19:18
feels right and good. And, and, and, and when I say
19:21
that my doctor knows and he's giving me free rein.
19:23
So, you know, he said, you know, just don't, don't, don't go
19:26
crazy. But if you need it, take it.
19:29
And if you need extra, take extra.
19:30
And if you're feeling like you're having a really bad day
19:33
and everything's off and you take your pills and nothing's
19:35
happening, he says take some more like, and even if you take
19:38
too much, even if you take too much, right, even if you just
19:41
whatever, you take a handful and you start and you have that
19:44
dyskinesia, it's going to go away and it's OK.
19:47
It's not going to, you're not going to hurt yourself.
19:48
You're not going to kill yourself.
19:49
So you know, then, then again, everything that you know, and
19:52
then I write it all down. What I did, how I did it, when I
19:54
did it, I wrote in my little journal.
19:56
And I recommend that if you don't have a journal, get a
19:58
bloody journal, get a doctor journal, man.
20:00
And that's the one you're going to go back to.
20:01
You're only going to see this doctor maybe every six months,
20:04
right? Maybe some of you're lucky you
20:05
get sooner. Where I am from, we see the our,
20:08
our, I call them the Parkinson's Dr. every six months.
20:12
Well, how the hell do you remember what happened five
20:13
months ago, right. Oh my God, what was I going to
20:15
tell the doctor? What was I going to tell the
20:16
doctor? So we have this book.
20:18
It's like a brown book and it sits up in the kitchen.
20:21
And when I experiment or I try something or I'm really
20:24
realizing things are not starting to work right for me, I
20:26
write it down. I write the, you know, the date
20:28
when it was. And then if it's, if it's being
20:30
consistent, then I also write down what I'm doing.
20:32
Did I change something that I, you know, am I not, you know,
20:35
when did I go to sleep? When did I wake up?
20:36
How many hours sleep am I getting?
20:37
What am I eating? Am I exercising?
20:39
What am I doing that that it could affect this this
20:43
medication? And then when I go back to my
20:45
neurologist or my moving disorder specialist, every six
20:48
months, we talk about it and it's like, you know, it's like,
20:51
Hey, you don't just because when you are going to do something
20:54
physical, you need more, that doesn't mean we're going to put
20:57
you on more all the time. So, you know, in that moment
21:00
you're do this, you take one extra pill or, or whatever,
21:03
whatever might be. And again, I'm talking about
21:05
this is the first five years, this around year 4 and 5 is when
21:07
I started doing that. So you know, it's, you have to
21:11
experiment. It's not going to hurt you to
21:12
experiment. It's you need to do what feels
21:14
right for you. Everything I'm saying is felt
21:16
right for me doesn't mean it's right for you, but you need to
21:18
find out what is right for you. And how do you find that out
21:22
Unless you experiment? How do you do that?
21:23
I don't know. Your guess is going to mine as
21:26
it is as good as mine. So here's the thing.
21:29
So what would I wish I knew in those first five years?
21:31
Well, medication isn't just to take it and forget it, right?
21:35
Timing matters. I find when I'm more disciplined
21:39
with, you know, taking the right amount of pills, you know, if
21:42
I'm taking it every four hours, if I take it on the nose every
21:44
four hours, on the nose, every four hours, on the nose, every
21:47
four hours, I feel better, right?
21:50
If I'm start missing it, I was 10 minutes late, 20 minutes
21:52
late, half an hour late, 10 minutes early.
21:55
It starts to affect me. So for me, that timing is
21:58
everything, right? So I set alarms on my phone.
22:01
I've talked to them before. I got alarms, phone alarms go
22:03
off and they're all set. My wife's phone's alarms go off.
22:05
My smart home goes off. It is insane.
22:08
So it's like a full press alarm when that thing doesn't shut off
22:11
until I take my meds and say I took my meds.
22:14
OK, that's number one. And the other two is I wish I
22:16
would have started exercising earlier.
22:18
I again, I hate exercising. So when I say I want to
22:20
exercise, it's not because I like to exercise and I hate, I
22:23
just don't like it. But I wish I would have started
22:26
walking. I walk a lot, do walking.
22:27
I wish I would have started walking earlier because it
22:30
complements the meds. I just feel better on the days
22:32
that I do it right. When I have my meds on time at
22:34
the right time and I'm doing some physical activity, I feel
22:37
the best. So I wish I would have started
22:38
that sooner. And this was also the phase that
22:42
I started realizing that, you know, Parkinson's was going to
22:44
be, was like, Parkinson's was going to be a long game.
22:47
And that's something that I could just treat and move on,
22:49
right? It wasn't something I could just
22:50
take and, and forget. And, and I think that's when
22:53
that reality kicked in. And that's when I kind of kicked
22:54
myself in the butt and said that you got to, you got to do
22:56
something. I got to do, do more.
22:58
I got to do more. So that was really when that
23:00
started kicking in. It was around that Year 5.
23:02
And I'm like, holy moly, this is with me for life.
23:05
This 4 hour alarm is my life till the day I die, you know,
23:10
and it's funny, I, I, when I talk about medications, people
23:13
say, well, you know, you're used to taking pills.
23:14
You're a pill guy. I'm not a pill guy.
23:16
Matter of fact, I, I never, I hadn't spent a night in the
23:20
hospital in my entire life since I was a baby.
23:24
I rarely took pills. I mean, you, you'd have to
23:27
really, I'd have to have the monster migraine before I took a
23:31
Tylenol. Like I just don't, I wasn't a
23:33
pill guy. So this is new for me.
23:35
So if you're sitting there going, well, you know, you know,
23:37
I'm not a pill guy or pill person.
23:38
And, and maybe you know that that's hey, join the club.
23:41
And I, I rarely took pills, rarely went to the hospital or,
23:45
you know, was rarely everything was fine.
23:47
I was a OK man. I thought it was great.
23:49
But anyway, that's just me again.
23:52
But you know, I ask you this though, if you're in your first
23:55
few years of Parkinsons, what's been your experience of
23:57
medication so far? Like just how has that gone?
23:59
And, and, and, and do you have a doctor that you can talk to
24:02
openly and, and, and say, let's, let's try this, let's try that.
24:05
And So what I used to do, because I would read some of the
24:08
Internet or see something and, and I'd go to my doctor, I'd
24:10
write it down and I'd go to my doctor.
24:11
Hey, I saw this guy, he looked about my age.
24:14
He looked pretty good. And you know, I asked him, you
24:16
know, how much levodopa did he take?
24:17
And he took this much. So what do you think?
24:19
Should we try it or he was taking one of these things,
24:21
should we try? And he said, would that help me?
24:23
And so that's, you know, that's what I do.
24:24
And he he sometimes he said no, sometimes he said yes.
24:27
But most of the time, because that was very reasonable as
24:29
well, he would say, OK, let's try it and see if it makes a
24:31
difference. If it makes a difference, then
24:34
we'll we'll change it. But again, remembering that long
24:37
game was taking as few amount of pills, few amount of levodopa as
24:41
I could right a day. Really, that's what it was, you
24:45
know, was trying to at a time, I guess is what I'm trying to say.
24:49
So you're 5 of 10. That year was just absolutely
24:52
filled with changes and challenges.
24:55
So as I got past the five year mark, I started to like start
24:58
shifting and like things start things like I I was shifting my
25:02
life around and I like I said, I was realizing this is I'm going
25:05
to get used to this. This isn't going away.
25:06
Maybe I just have this naive denial that it was going to go
25:10
away. And so that's, you know, it's
25:12
right around that five year mark into the six year mark that
25:15
things, you know, it's it really started to shift and it was more
25:20
noticeable for me too. You know, I was getting new
25:23
symptoms, right? And then which came new symptoms
25:26
came with, you know, different, you know, medications, right?
25:30
I was now I have started to experience really that real.
25:35
Excuse me, I started more of those like motor fluctuations,
25:37
more of those off periods, stiffness before the next dose,
25:41
You know, it was just really feeling weird.
25:43
It was more inconsistency. I felt like I'm like, hey, this
25:46
is easy. I got this.
25:47
I know how many pills to take. I know how often to take them.
25:50
I nailed it. Like I can do it.
25:51
And that's, you know, clear sailing.
25:55
But then again, then I started realizing, Oh, I was getting
25:57
like around the, you know, 3 hours in, I'm starting to feel
26:00
awful, starting to feel stiff again on my brain fog.
26:03
My memory was going, my voice was starting to come down.
26:07
I, you know, in the morning time when I'd wake up after not being
26:10
on anything all for a few hours or 8 hours or 9 hours.
26:14
I mean, if I ever slept in, I was horrible.
26:16
If I ever slept in, which was rare, it was awful.
26:18
Like I'd be be 11 hours up without, without levodopa.
26:22
And I was like, I couldn't move. I really was stuck.
26:24
I was an old, really, really old guy.
26:27
And, and again, more, again, but more of that stiffness that off
26:30
this coming in probably around 3 hours.
26:33
So that's when I had to adjust my dosage frequency, right?
26:37
So now again, I was taking three, right?
26:40
I was taking 3 levodopa every four hours.
26:43
And I, I had this, I had the choice to make.
26:47
And then what the choice that we made was, I went, rather than
26:51
going up to four or five every four hours, could have been 6
26:55
every four hours, I went down to three hours.
26:58
So now I started taking 3-3 levodopa every three hours.
27:04
And I also added in the carb, sorry, the Primaprixol in there.
27:08
So then now I went up to three Primaprixol.
27:10
So now my first dose and, and this is the way it is today.
27:14
So this is like you're 6 or 7. And now I've been flying on this
27:17
one for seven years that my first dose is the levodopa and
27:21
Primaprixol. Three hours later I take my
27:24
again, levodopa, primaprixal. 3 hours later, levodopa,
27:27
primaprixal. And those are the primaprixil
27:29
are milligrams, 1 milligram. So I take 3 one milligram pills
27:35
a day. Sorry, I just said that's how I
27:36
am today. And if not so, but the
27:38
schedule's the same and I'll explain that in a minute.
27:40
So, so that's where I was going to was the three hours.
27:44
So, so then I'm on this three hour schedule and I'm doing it
27:48
again all day long. So if you can figure that out.
27:51
So if you're up for, you know, 15 hours and you're doing, you
27:55
know, 15 hours, you're doing every 3-3 hours, that's what is
27:58
that. That's five, you know, five
27:59
shots of medication at 3 pills, right?
28:03
So now you're at now at 15. I guess 55 by 3 is 15.
28:07
So anyway, so that's again, so the primiprixile now it
28:12
increased that as well. So we're really what I'm trying
28:15
to do is I'm trying to get through the three hours without
28:17
an off period. That's my goal, right?
28:18
I want to go through and then notice 3 hours is when as far as
28:21
I could make it. So now I've got the primiprixile
28:23
rolling, I've got the, I've got the levodopa rolling.
28:26
So three in one every morning and every three hours and what
28:30
I'm doing. But now some of those side
28:32
effects were starting to appear a little bit, just a little bit
28:34
not bad, like not bad. But I started noticing some like
28:37
mild side effects, like, you know, the fatigue the, you know,
28:42
just like I just little things were starting to really kick in
28:44
a bit more for me. I can feel like I can feel like
28:47
my body, it's so crazy. My body wants to go right, like
28:50
I want my body wants to fly around.
28:52
My body wants to move like I can feel it right now if I let go it
28:55
going. So right now I still have some
28:57
control over it. I can hold it in.
29:00
But if I'm just not paying attention and I'm just sort of
29:02
sitting hanging out, we're just like, I'm not I, I, you know, I
29:05
want to move, right. I want to move my leg, my feet
29:08
and move quite a bit. So that's, but that was new.
29:10
That's been coming around that year 567 that really started
29:13
coming. And so, you know, everything
29:15
started becoming a balancing actor right now kick in.
29:18
Now I'm back to finding the right dosage, right, the right
29:22
dosage at the right duration. And, and again, that's like, Oh
29:26
my God, is this my life? Is this my life?
29:29
And and so that's where, you know, again, I had to start
29:32
looking at my schedule, my daily schedule and what it looked
29:35
like. And I realized as well that, you
29:37
know, I know I need 30 minutes and minimum 30 minutes, like 30
29:40
minutes just to move right, 30 minutes to kind of brain fog to
29:43
release 30 minutes. Now when I wake up, I slurring
29:46
my words. So now not only am I, you know,
29:49
if I got tried to move around the bed in the morning, it was
29:52
like that little, you know, I've come like 150 year old little
29:54
old man. And now I sounded like I was a
29:56
drunk little old man because, Oh, my voice slowed down,
29:59
slurring away. Can I get good morning?
30:02
That's kind of what I saw like in the morning.
30:04
And I'm like, well, that's new. Holy moly, I didn't like that
30:06
one. But that, that that's what it's,
30:07
you know, you know, that's that that's that's what it's at.
30:10
And that right there, like that little stutter.
30:13
What the hell? I mean, I've been a speaker my
30:15
whole life. That's what I do.
30:16
This is my wheelhouse. I love it, I enjoy it.
30:18
I'm so thankful for the opportunity to, to sit down and
30:21
be able to do this because it's kind of what I like to do.
30:23
And then also I start this little stutter thing going.
30:25
I'm like, what is that stutter thing about?
30:27
And memory recall loss, I'm like, Oh my word, this is awful.
30:31
Like this is bad. That's why I don't want that off
30:33
period. Like as long as I can do it, I
30:35
don't want it right. So here I am now.
30:39
So it's a 15 years, well, 14 1/2 years in and what does my
30:43
medication look like today? And now I'll tell you this, I'm
30:46
almost 15 years in, but I've been on the schedule now for a
30:49
year now, one year now. And what happened was I went to
30:55
my doctor, it was like about a year ago and I said, OK, so
30:59
here's the thing. And I, I guess I was trying to
31:04
brain trick myself. I didn't realize this, but here
31:06
I went to my doctor. I said, here's like, I'm
31:07
starting to feel like I'm really certain.
31:08
And now I can, you know, for the first five years I noticed the
31:11
progression, but it was really slow.
31:12
I could just notice it later, like I can't do that anymore.
31:14
That's a little bit slower. But I said I'm really noticing.
31:18
I can really see it. I can see my face, you know, my
31:20
face is more masked, right? I could, I can feel the mask
31:24
more and, and I know I'm very vain.
31:26
So I don't really like that, but I, you know, I can sense that.
31:29
I can sense my, my more of a masking coming on.
31:31
I can, I know I'm slower, right? I could always kind of make up
31:35
for it in the past, like I, I'd be slow, but then I could go and
31:37
I'd be slow and then I could go. But now I, I know I'm feeling
31:40
slower. I just know what I'm thinking
31:41
slower. My cognitive, I'm cognitively,
31:44
I'm thinking slower and I know, and I'm like, it's just, I don't
31:48
like that. And he at that point, he goes,
31:50
well, then we need to eat, you know, we need to increase your
31:53
medication or your duration, whatever you, you know, where
31:55
we're at. And we got to play with it
31:56
because that's the first sign. Like when you start really
32:00
noticing that, you know, then you're not, you need more or you
32:03
need some more. And, and I'm gonna say like this
32:05
probably like, oh man, you know, I don't want to take.
32:07
I'm so scared of the side effects of, of the levodopa.
32:10
I'm so scared of less side effects of levodopa.
32:11
But I've known people that have been diagnosed and if you've
32:14
been diagnosed and you haven't started the medication, let me
32:18
ask you this. What's the worst that could
32:20
happen? Like you think about it from
32:22
right now that I believe this, that the sooner you, you know,
32:26
deal with this and the sooner you get on the right, you know,
32:28
the right little medication at the right time of day and get
32:30
your exercise plans going, get your brain things going, get
32:33
things in place to help you, the longer you're going to hold this
32:36
thing off, I believe it. And and again, you can look at
32:39
proof in the put in if you want. It's working for me and I'm just
32:41
trying to help throw it out for you and might not be the same.
32:44
And, and please, you know, everybody's different.
32:47
Everybody has their own story and it's there's no condemnation
32:50
anything. I'm saying everybody progresses
32:52
at different rates and what you're supposed to progress at.
32:55
So this is just my story and what works but it but what did I
33:00
say? The side effects, the most
33:02
common side effects of levodopa are right, is the involuntary
33:05
movements of the body and some swaying.
33:09
What are the sign of what are your symptoms of Parkinson's?
33:11
Are they involuntary movements? Are they swaying?
33:14
Are they shaking? Are they?
33:15
So what you're saying is if I take this medication for too
33:20
long, I'm going to like have Parkinson's.
33:22
Is that what you're saying? Like you have it already?
33:26
So for me, this is me. I would rather do this then not
33:36
take the medication or not take a nap and be like this and talk
33:39
like I, I and snooped over and I'm so sore and my body hurts
33:43
and I'm tired and I can't move and I'm having no more
33:46
remembering what's going on and, and, and my tremor is just like
33:49
out of hand. Like it's like really, really,
33:51
really going. And I know, and this tremor just
33:53
just doesn't stop and, and I don't know what what's
33:56
happening. And so really.
33:58
So would you rather that this, you know, and being able to
34:02
still, you know, be what you are?
34:03
So anyway, that's, that's just that maybe was for somebody.
34:06
Take it if you want, take it if you leave it.
34:08
But anyway, so today I am on I do, I do, I do what I'm at now 4
34:17
tablets. So I'm doing 4 levodopa 100 / 25
34:21
every three hours, OK, every three hours, four every three
34:25
hours. And I do 3 Primaprixel, 2
34:29
milligrams now 3 Primaprixels when I'm up to 2 milligrams
34:33
three times a day, my first 3 pills.
34:36
So that's my and I, and I should have mentioned to around 3 years
34:42
ago, I stopped taking the antidepressant the I can't
34:46
remember what it's called. I don't want to look at it now,
34:49
but again, it's all in the descriptions below.
34:51
But I stopped taking that as well.
34:53
So I came off of that increase these a little bit and I'm
34:56
feeling OK. I'm feeling not bad like I'm
34:58
feeling, you know, not great, but good.
35:01
You know, that makes my doctor happy when I say that not great,
35:03
but good. So, you know, but, but I have to
35:07
be much more aware, right, of the timing and, and because
35:10
those delays like they're huge now I'm noticing that if I was
35:14
20 minutes late on a pill or 20 minutes late on my medication or
35:18
half an hour late on my medication before it was like,
35:20
OK, I'm a little late. I could feel it a little bit.
35:23
But now my off periods are way more pronounced.
35:27
And so I really have to adjust my schedule to ensure that I
35:31
can, that I'm going to be able to take those medications.
35:33
Like if I'm in a meeting or whatever, I need to be able to
35:35
take those meds on time when I need them.
35:38
So, and that's, it comes back to saying that's why everybody
35:41
around me knows that I, I have it.
35:42
It's not a big deal. If my, if I'm in a board
35:44
meeting, you know, at Parkinson, I'm in a meeting at Parkinson
35:47
Canada, my alarm goes off. It's not a big everybody OK
35:50
brace, take your meds. All right, take your meds.
35:52
And then I also tell people around me.
35:54
So if I'm so another matter of fact, I was working in an event
35:57
Michael J Fox and Parkinson Canada, PDIQI host them and
36:00
moderate them. And here's a short little plug
36:02
up. We've got two of them 22 events
36:05
this year, one in Toronto in October and one in Montreal in
36:10
in May. So you know, if you're
36:11
interested in coming out and seeing us, that'd be great.
36:14
It's a great day. It's all day Saturday and I'm
36:16
moderate 2 panels and I'm hosting the event and, and it's
36:19
a it's a it's, it's an amazing, awesome panel, panelists and
36:23
stuff. So anyway, drop, you can drop in
36:24
the comments and I can get back to you and give you more
36:25
information and I'd love to see you there.
36:27
It's a free event. It's all cool.
36:28
So Montreal and Toronto this year anyway.
36:32
So when I'm doing those type of events though, I mean, I
36:35
literally plan my day around my meds, like sorry, my meds around
36:37
that day. I know, for example, if I have
36:39
an early morning meeting at 9:00 AM, then I need to be again up
36:42
at like 5. I need 5.
36:43
I want to be on my second dose by the time my day starts, but
36:47
you know, really, really starts because I want to be fully on.
36:49
I want, you know, the brain fog to be gone and whatnot.
36:51
And the other thing I was going to say, when I'm running those
36:53
events, I have a lot of staff and, and a lot of my teams are
36:56
there, but I've told them, you know, what, if you start seeing
36:58
me kind of slurring or, you know, kind of seeing me shaking
37:01
more and everything else, you know, just ask me, Hey, is it,
37:04
you know, it's time for your meds and I won't be offended.
37:07
And, and they do that. It's pretty cute actually.
37:08
It's so funny. There was the last event I was
37:11
at. I was in Vancouver.
37:13
I was in Vancouver nose Halifax. I was in Halifax and I was on
37:18
the stage and I and my wife, you know, the ice, my alarm had gone
37:21
off and she was texting me from home going take your meds and I
37:23
wasn't getting back to her. So you know, she has you know,
37:26
she started texting people how to work with Hey, tell brace,
37:28
take his meds, tell brace and I came off the stage.
37:30
I had like four of these, you know, young people just going
37:33
you need to take your meds right now.
37:34
It's like really urgent and you know, Carmen's going to Carmen
37:36
really makes for you think of it.
37:37
So it's like really, really cute.
37:38
So they they find out that people actually love and care
37:41
about you so much and want to be there for you.
37:42
So that's where that takes a village sometimes.
37:46
And trust me, at the end of the day, it's me that's happy
37:50
because like I said, those off periods, holy moly.
37:54
And thankfully, I, I, I don't have any significant dyskinesia.
37:59
I, you know, I do experience it. I do experience the stiffness,
38:01
the fatigues. I do experience the swaying.
38:03
I get that my, my foot sways, my leg sways, but, but it's OK, you
38:07
know, managing, here's the thing, managing Parkinson's now
38:10
requires more than just medication.
38:12
It's that full body, right? It's the exercise, it's the
38:15
planning. It's, you know, medication is a
38:18
tool, not a cure. And that's one thing that you
38:20
have to remember, medication is a tool, not a cure.
38:22
And it helps manage the symptoms, but it's still not a
38:24
fix. And I'll say this as well, that
38:27
that right medication plan will evolve over time.
38:30
So again, what we got to remember is what works today may
38:32
not work in five years, may not work next year.
38:35
And you need to advocate for yourself.
38:36
You need to advocate for yourself.
38:38
It's the key with your doctor. No one knows your body better
38:42
than you. Nobody knows your body better
38:44
than you. You have to be, you have to be
38:46
screaming from the rafters. If you're not feeling something
38:49
or something's not right, you have no choice.
38:51
You need to do it and you have to do it.
38:55
And that that those are things that I've really, really,
38:57
really, really learned. And I think it's super
38:58
important. And just remember that
39:00
Parkinson's medications are a journey.
39:01
And what worked in the beginning isn't always going to work
39:04
later. And if you're feeling frustrated
39:05
with your current medication, know this, you're not alone.
39:08
We're all figuring this out. It's a work in progress.
39:10
It's one of those things that you get to have because you have
39:13
Parkinson's. It's, you know, it's managing
39:15
those, those those frustrations and what a fun episode.
39:19
I had really a lot of fun here. So, you know, and if this
39:22
episode helped you at all, you know, please, I really would
39:24
love it If you want to take a moment and dislike and comment
39:26
and subscribe it really, you know, keeps the conversation
39:29
going and it helps, you know, helps, helps the channel helps
39:32
us get out there and hopefully reach more people.
39:35
But anyway, thanks again for joining me.
39:36
I really love you guys. I love this community and I'm
39:38
excited that it's growing and and I thank you for being with
39:41
me along the journey. I'm thankful I can come on the
39:43
journey with you. So make sure you say hi to me
39:45
and I'll see you again in the next one.
40:00
Parkinson's may be part of your life, but it doesn't get to
40:03
define it. Thanks for listening to Living
40:06
with Parkinson's, the good, the bad, and the reality.
40:10
If this episode moved you, helped you, or reminded you
40:13
you're not alone. Share it with someone who needs
40:16
to hear it. Want to go deeper?
40:18
The Inner Circle is waiting. Monthly Zoom calls, 24/7
40:22
community, and a Direct Line to Bryce.
40:25
You'll find the link in the show notes.
40:26
Until next time, keep showing up and keep doing life today.