Latest / Living with Parkinson’s | Bryce Perry / The Hidden Parkinson's Side Effect Doctors Never Mention

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The Hidden Parkinson's Side Effect Doctors Never Mention · 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
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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
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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. I've been living with
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Parkinson's for about 15 years now, and I thought I'd seen it
0:37
all. I mean, the tremors, the meds,
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and yeah, I expected those, but no one, and I mean nobody told
0:44
me about these side effects. Some of them are weird, some are
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frustrating. And honestly, a few of them are
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just straight up humiliating. So today, we're pulling back the
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curtain, and we're going to talk about the stuff they don't
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mention in the brochure. Hey, welcome back.
0:58
And if you've been here before, you know, you know, I'm always
1:01
glad to see you. And if this is your first time,
1:04
my name is Bryce. And this is living with
1:06
Parkinson's, the good, the bad, and the reality.
1:08
And this channel is all about keeping it real, real life, real
1:11
stories, real support. So whether you're living with
1:13
Parkinson's or loving somebody who is, you're not alone.
1:16
And if that sounds like something that you need in your
1:18
life, then go ahead and hit that subscribe button and come along
1:20
for the ride. OK?
1:21
Today's episode is one that I've been meaning to do for a while.
1:24
And it's called the Parkinson's Side effects that nobody, and I
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mean nobody, nobody warned you about.
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And I want to get right into it. So let's start off with the
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stuff that totally blindsided me, OK?
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Like, these are not on the radar when I got diagnosed.
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They weren't even close to the radar when I got diagnosed.
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One of them is impulse control issues.
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OK, confession time. At one time, at one point, I had
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14 orders in a row with Amazon and thinking of the day.
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And I didn't even need most of it, unless you count the glow in
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the dark slippers and the pancake batter dispenser as
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essential. But it turns out some
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Parkinson's medication, especially dopamine agonist,
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agonist, agonist. I never said it properly, but
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anyway, can mess with your impulse control.
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For some people it's gambling, for others it's sex.
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And for me, it was late night shopping with zero budget
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awareness. And it's kind of funny until
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it's not. And so, you know, one of the
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things that so, and I've mentioned this before in, in
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previous podcasts that Primiprixal is a, is a big one
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of these drugs. And we were talking about this
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in the other podcast. What did I do with my buddy
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Brian Life in motion Sundays, Sundays at noon, Eastern Time
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live. And we were talking about that
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and he was talking about, you know, this, you know, he gets
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different. And we're anyway, Primprixel
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came up and it's one of the things that, that, you know, we
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always have to monitor and when if you're on it and you'll
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notice that and you should your, your doctor, you're prescribing
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Dr. neurologist, moving sort of specialist, whichever you use,
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you know, one of those first questions when you come in is,
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you know, how's your sex life, right?
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How's your gambling? You know, any crazy thoughts,
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any impulsive thoughts? My big joke always was like, so
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we're talking about like gambling sex, gambling sex, you
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know, whatever, blah, blah, blah.
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I'm like, you know what, I don't need, I don't need primiprexile
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for that. I mean, I'm all I'm, I'm as
3:20
impulsive as they get. But I, I say that jokingly.
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But but seriously, I say that jokingly, really I do.
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But, but it's something that I have to monitor.
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You know, I, I am an impulsive person.
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I can do impulsive things. So I the part about like, you
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know, shopping on Amazon and, and shopping, that's not one of
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the things I'm impulsive about. And I kind of started this with
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I was, I was going to say that and leave it there.
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But the reality is, I mean, I could be impulsive sexually, for
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sure. I can, I can be impulsive, you
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know, gambling, you know, if, if I was in the mood to gamble, you
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know, that type of thing. And, and I don't often gamble
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and I don't often, you know, hit the, the Vegas Strip.
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But when I, when I do, I mean, I could go for it, right?
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So there's things that you have to monitor.
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So if you are on any of these things where you're feeling you
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have these impulsive disorders, make sure you talk to them, talk
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to your doctor about them. And, and if you have somebody
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that is a trusted, you know, care partner or friend or
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something, you know, be accountable to them, Let them
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know that you may, you know, this may be, you may be
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struggling with this. And, and the bottom line is if
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there's an impulsive issue that is causing you distress, then
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definitely talk to your doctor about that.
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And, and you can either cut that, that drug that's causing
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it out or maybe limited or lower it.
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And so for me personally, my impulsivity did not change, you
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know, I'm sorry, ours right here anyway, but it didn't change.
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And so it didn't get any higher, didn't get any lower.
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And I kept going and you know, through the years I've been,
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I've been taking Primiprixile now for gosh, about 14 years.
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So, and then I guess it was about 6 months ago or a year
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ago, maybe a year ago or six months ago, one of my, one of my
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previous neurology appointments, last ones we've actually doubled
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the dose. So I went up in dosage and I'd
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taken with my first 3 doses of levodopa.
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So anyway, that's something that no, but, but again, I didn't
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know. I mean, he told me after the
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fact and but the, the truth is that's one thing that you'd
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never think about, right? I mean, I'm just trying to get
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some damn medicine or some, some, some type of thing that's
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going to, you know, again, no cure disease.
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Lucky us, but yet just something to help temper the, the, the,
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the, the side of the temper the symptoms and, and, and help us
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and, and now we've got to worry about that.
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So definitely something that nobody told me and, and again, I
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hope you're not dealing with that.
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And if you have, if you have done that with, with the prima
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Primaprixole or there goes my, my drugs are going off.
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But primaprixole or or any other thing like that, make sure to
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put in the comments. I'd really like to know to have
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you experience this. Was it, you know, did, was it
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from the side effect from the, from the primaprixole or another
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drug? And, and let's share.
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Let's let me there's a community.
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I mean, if in the comments I read all comments, I replied all
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the comments, but let's start a conversation because I think
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this is really important for a lot of people to know.
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OK, All right. Second one is the vivid dreams
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and the nightmares. Who can relate to this one?
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This one's wild, right? I've flown over cities, I've had
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full blown conversations with people who passed away years
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ago. And I once woke up trying to
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catch an emerginary cat under the bed.
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These dreams are so vivid. They they're so vivid.
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They like they feel like an all like an alternate reality.
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You know, my wife Carmen once said, you know, that you were
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fighting your sleep again last night.
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And I just said, well, you know what, at least I won.
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But my dreams are crazy. And this is something again, I
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never thought of it. They're so vivid, so real.
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I've talked about them on previous podcast, but literally
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in the morning, you know, my wife doesn't know if I'm asleep
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or awake. And it just based on the
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conversation, I've looked at her in the eyes and she said, you
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know, how are you doing? And, and I've said, you know, be
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quiet, be quiet. And she's like, why do I have to
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be quiet? And I'm like, well, because
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they'll hear us. And if they hear us that that
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nurse is coming back and she's going to try to give me more
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drugs, more pills. I call drugs.
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I hope that's not a bad offensive word, but she's going
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to try to give me more pills. She's trying to overdose me
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because this she doesn't want this Parkinson's and blah, blah,
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blah, blah, blah. And she'll look at me and she's
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like, you know, are you awake or asleep?
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And I'm like literally sitting up, having a sip a coffee,
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looking at her and but I haven't wouldn't come out of that dream.
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And it was so real. So how about you in the
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comments? Have you dealt with that one?
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Right? And if you did and that's and
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then you can relate, you know, hit that, hit that like button.
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That would be awesome. OK, how about this one sudden
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sleep attacks. Now this one's scary, right?
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You'll be mid conversation or fully awake or mid conversation
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fully awake and then out of out like a light.
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You know, it's it's not just feeling drowsy.
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It's literally you're brain hitting a switch and saying
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Nope, we're done and everything just shuts off.
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And when it happens, you know, and like the scary part for me
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is like, what if this happens if I'm behind the wheel or I'm
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cooking or you know, that's a whole nother level of danger.
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And again, that is not something anybody told me would happen.
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Not at all. I mean, I have trouble sleeping
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right? I can have an insomnia, I can go
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nights I can go, I can go like 3-4 days in a row without,
8:14
without sleeping. And those are the days I wish
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I'd fall asleep. I wish I just, you know, halfway
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through the day just bang them out.
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But there's just complete random crazy wild days where all of a
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sudden I just, I'm done. Everything shuts off.
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It's like someone turned the batteries off, someone shut the
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light off. And I'm just so anyway, for me
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so far anyway, I have not fallen asleep doing something that I,
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you know, was, could have been dangerous.
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But, but I mean, it could, it could happen.
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And, and does that happen to you also?
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Does that happen to you? Let me know in the comments.
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And, and have you, has it ever caused you danger?
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Has there been danger? And it's, it's wild, but I'd,
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I'd love to hear from you about the conversation.
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So here's the other thing. The other side effects that they
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haven't no one told me about, right, was the daily life
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disruptors. Now these ones are, they're not
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dramatic, right? They don't make the headlines,
9:07
but they chip away at you day by day, bit by bit.
9:12
And what are some of them? OK, well here's one.
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How about the nausea games, Right.
9:15
Taking meds shouldn't feel like solving A Rubik's Cube.
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Like, too early I'm nauseous. Too close to food, nauseous.
9:22
Too late now I'm stiff and nauseous.
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It's like playing Tetris with your stomach.
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You know, honestly, if you, if you took me a full, if you took
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me a full year, It took me a full year to figure out my Med
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timing right? And even now it's still a moving
9:36
target. So wherever you're at of the
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journey, if you're newly diagnosed, be patient, be
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patient with yourself and your doctor and and as you're trying
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to get this perfect dose of timing and and dosage with your
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meds. Mine took me about a year.
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I'm glad it took me about a year because it's been a great kind
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of template for me, you know, 15 years in now and I, I'm doing
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fairly well, right? But, but it's like if I, my, my
10:04
one to third, my third dose is usually around noon, right?
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So that's three Levodopas and a Primaprixol and and that's
10:13
beyond that. I'm not even counting the high
10:15
blood pressure and all those medications as well.
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But that third, that third pill. So if I take my pills, my level
10:22
open around like noon is between noon and two and I haven't had
10:26
something even a cracker or some sugar or like a you know what I
10:30
love? I love M&M's peanuts.
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I love those things. How about a like for that?
10:34
You like those M&M peanuts? Let me know in the comments
10:36
because maybe it's just me, but man, I could eat M&M peanuts all
10:39
day long. Don't like the chocolate ones.
10:41
I don't really almond ones are OK, but the yellow package M&M
10:44
peanuts and this is not sponsored by M&M peanuts.
10:48
But if M, if there's some representative for M&M peanuts
10:50
watching, I would love I mean, I would like you just send me M&M
10:54
peanuts and I'll mention it on every broadcast.
10:56
But anyway, I'm just teasing, but but if I need a little bit
11:01
of sugar or I need some crackers or I need something in my tummy,
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if I haven't had lunch, that one just like whacks me out.
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Like I get nauseous, I get dizzy, I get, you know, room
11:10
spinning. And so anyway, again, these
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crazy side effects. Now here's the big one, right?
11:16
The dyskinesia. And I'm going to do an entire
11:19
episode just on dyskinesia because it's such a big topic.
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Everybody's asked me why I don't have my dyskinesia, but I do.
11:27
And I know I'm going to and I'll, I'll show you a little bit
11:29
more about it, talk about it, what it is, where it comes from
11:32
and, and how you can manage it. But the dyskinesia it, that one
11:36
messes with your confidence, right?
11:38
You're finally up and moving and now your body is moving too
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much, right? I've had people ask me if I'm
11:43
OK, if I'm nervous, if I'm cold, if I've had too much coffee.
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And I'm just like, Nope, just my brain firing off like fireworks
11:50
for no reason. And sometimes I try to laugh it
11:53
off, but some days it just makes me want to hide.
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So that dyskinesia, that's what that dyskinesia does with me.
11:59
And that's why I'm so anal on medication timing and dosages
12:06
and, and being right on the nose because every minute, even a
12:09
minute here or there, 5 minutes here or there can really mess me
12:12
up. And, and if I miss it, I'm, I'm,
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you're going to see me again. I say it like this, you're
12:17
probably sitting there going right now.
12:18
It looks great. It looks great.
12:19
Well, thank you. But but it's not about for me,
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OK, It's is it vain? Yes, absolutely.
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But you know, when people see me, right?
12:30
You see me doing, you know, a video or being on stage or at a
12:35
live event, you have to remember I'm at my best, right?
12:39
I'm I have timed my meds. I have timed everything around
12:42
that moment to be a still as as cognitively zoned in as I
12:49
possibly can. And that my joke, if you see me
12:51
3 hours from now or you saw me 3 hours before this, you wouldn't
12:54
say the same thing. You know, if you were my wife,
12:58
you wouldn't say the same thing. So there is like a a me here.
13:01
This is me now like this. And then there's a whole
13:04
different me. And so, but I just work really,
13:08
really hard. I'm very, I work diligently,
13:11
diligently, hard at maintaining the best I can be in public and,
13:17
and, and really all day. To be honest, that's not like I
13:20
want to be doing this when I'm not on camera.
13:22
So I I just work hard at it. So anyway, how about this one?
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And again, don't let me let me digress here a little bit.
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If, if dyskinesia, if I'm going to, I just have this feeling
13:35
that it's something that people want to know about.
13:37
And so in the comments, let me know.
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Just please let me know. Just like dyskinesia, yes or no
13:42
big deal, because I think I'm going to make a video on it
13:45
here, a podcast, do a podcast on it.
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I just want to make sure I don't want to waste my time or yours.
13:49
I want to give you what you want and, and, but it's on my mind.
13:52
So here is A and by the way, if you're liking this, I'd love it
13:58
if you'd like this video or share it with somebody who needs
14:00
to hear it. And if you're, if you're not a
14:04
subscriber, please subscribe. I mean, come on the journey with
14:07
us. You'll get notifications of when
14:08
I'm on and going live. And that's the one thing for me
14:11
and I appreciate and I love all of my inner circle members and
14:17
my subscribers, but I, I'm honest and real as it can be
14:20
And, and I, I'm terrible at timing.
14:22
Like every, you know, there's like your podcast come out on
14:25
Wednesdays and Thursdays at 6:00 AM and you know what, you know
14:29
what I said? I have Parkinson's, man, I, I
14:31
can't, I have to plan these around my Parkinson's, not the
14:34
other way around. And so I do my very best to give
14:38
you as much notice when a new video is coming out.
14:40
And I try my best to be on schedule and keep a schedule.
14:42
But if my best suggestion, if you want to follow me and if
14:47
you're part of this community is when you subscribe, if you're on
14:50
YouTube, hit the, the bell, the notification bell.
14:53
And that way you'll be notified when a new video comes out.
14:57
Or you know what, join the inner circle.
14:59
There's will be there's links in the description below.
15:01
And I'm gonna put my schedules in there and let them let you
15:04
know. That's where I have my, my
15:06
schedule. So you'll know when things are
15:07
coming out. You'll be the first to know.
15:09
OK, moving on. Anyway, mood swings.
15:12
How about mood swings? That one is hard to explain
15:16
unless you've lived it. Like one minute I'm totally fine
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and the next time like crying because I saw a dog in a baby
15:20
stroller. It's like, it's like my emotions
15:23
get hacked by a toddler with the sugar high.
15:26
And it's not just me, it's like this.
15:27
It's super common, but rarely talked about.
15:30
I mean, I can go up and down like crazy.
15:33
I can go over as happy as I can be to like cranky and Rd. ragey,
15:37
or I can go from like that, that kind of kind of just in a weird
15:40
down mood and then just laugh my butt off at something that
15:42
really isn't that funny. And these mood swings are wild.
15:45
And again, let's talk about it. You have mood swings.
15:48
Do you deal with that? That that's a wild side effect.
15:52
Now, some side effects that I don't know if you'd consider
15:55
these side effects normally a normal person, but I'm not
15:57
normal, but I, I call them like the social side effects, OK.
16:01
And these ones are like where it gets really personal because
16:05
these aren't just physical side effects, they impact your
16:07
relationships. Like like for example, I love my
16:11
wife, but some days I shut down not because I don't want to
16:14
talk, but because I don't know how to talk about what I'm
16:17
feeling. And that creates distance even
16:19
when you're sitting right next to somebody.
16:22
Or how about the you look fine problem like this one makes me
16:25
want to scream. You know that you've heard this.
16:27
You know you've heard it. You you don't look sick.
16:30
You don't look. You don't look fine.
16:32
Are you sure? Are you sure you have
16:33
Parkinson's? Maybe you should get a second.
16:34
Third diagnosis. Third diagnosis.
16:37
The third, whatever we call them, opinion.
16:43
Cool. I'll just go sniffing up in the
16:44
corner while you process that, right?
16:47
I get it. People mean well, but when your
16:49
struggles are invisible, it can feel like no one else.
16:52
No one sees the real battle. It's like it's like taken for
16:55
granted. It's like you look fine, like
16:57
move on, you look good. Or hey, you did, you did this
16:59
yesterday. Why can't you do it today?
17:01
And it's like, it's those days I wish, I mean, I don't wish this,
17:05
but I feel like I wish it wasn't so invisible because I'm tired
17:08
of trying to explain it all the time.
17:09
You know, those days. Anyway, there's also this side
17:13
effect that I hate changes in communication.
17:17
I used to be expressive. I used to talk with my hands
17:19
animated and I still do. But now my voice is quieter and
17:23
my face is more still. People ask if I'm upset and I'm
17:26
not. And I'm trying to hold it all
17:28
together and, and, and that makes social stuff really
17:30
exhausting, you know, and we don't talk enough about those
17:33
things, you know, and, and again, if you're a regular
17:37
listener, viewer of the podcast, you know, this, this face is
17:40
driving me bananas. I don't want to have this face.
17:42
I want to be, you know, happy Joe without pushing it, you
17:45
know, really without having to fake force, if that makes sense.
17:50
So those are social what I what I call social side effects that
17:54
just absolutely suck, right? OK.
17:57
But OK. But I'm not leaving you there.
18:02
What actually helps? So what do you do?
18:06
How do you manage all these side effects without losing your
18:08
mind? Well, here's what works for me.
18:10
OK, I got all these different tricks and you've heard them
18:13
before. I've got that pill cap timer
18:15
that reminds me exactly when to take my next dose of, of
18:17
medication, right? I've learned to schedule my meds
18:20
around meals. And yes, I've skipped bacon just
18:23
to keep my meds working. And that's real love.
18:25
Or other days when I really wanted the bacon, I double up or
18:28
I, I double up my, my dose or I would take an extra half a pill
18:31
or I take my pills earlier afterwards.
18:33
I, I find what works for me. I journal, right.
18:36
So how do I know all these things?
18:38
I journal. I track my symptoms and I, and
18:42
when I notice a pattern, I bring it up with my doctor.
18:47
OK, that's what I'm trying to talk about.
18:49
When you go to your doctor, don't waste your time.
18:51
If one day this thing happened to you, one day, you know, in
18:56
the six months that you haven't seen him or her, who cares?
19:01
Look for trends, look for things that are happening a lot.
19:05
Man. I'm really not sleeping.
19:07
So I track my meds. When did I take my meds?
19:09
What did I eat? How much exercise or did I have
19:12
physical exercise? Did I get out and walk?
19:13
Have I done something? What have I done differently?
19:16
And I journal all that so that I can see a trend.
19:18
And then I'm like, hmm, when I do this, this happens.
19:23
And that's what I talk to my doctor about.
19:25
And we become he and, and he knows my doctor knows I'm on it,
19:29
right? So he listens, hears me and we
19:32
had a solution or something to try and we tried right away.
19:35
So don't waste your time in these.
19:36
You only get a couple of appointments a year.
19:39
Don't waste them on trivial things or like, you know, what
19:42
about this or what about that? Where you can find, listen, if
19:46
you, you know, you can search about yourself or figure them
19:48
out. Go for the stuff that you're
19:50
only got this moment in time with them.
19:52
And you really want to talk with these trends.
19:53
You really want to get your meds down pat.
19:55
You really want to, you know, talk about the dyskinesia and
19:57
what's the best way to hold it off and the best cocktail and.
20:00
You know that type of stuff, that's what you want to talk
20:02
about. OK, And that's that was my next
20:04
point is talk to your doctor. Don't downplay it and don't wait
20:08
until it's bad. Tell them everything, OK, Even
20:12
if it's weird or embarrassing stuff, sexual problems, gambling
20:15
problems, If you're look, that's what he's that's what they're
20:18
there for, right? And you deserve to be heard.
20:21
And most importantly, most importantly, lean into
20:24
community. I can't stress this enough.
20:26
You have to lean into community, you know, whether that's a
20:29
support group, it might be this YouTube channel, right?
20:33
It might even be the inner circle that, that private
20:35
community that, that, that I have, right?
20:38
That where we can really talk and get, get, get dirty, you
20:42
know, get down and dirty, peel off, peel away this onion, peel
20:45
away this. And, and that's why I like the
20:47
private community because and, and I think I'm so thankful for
20:50
you that comment and, and you know, make comments about what
20:54
you're going through and how you're feeling because it's so
20:56
brave, right? You're in a public forum and
20:59
it's brave. Well, I've set up the private
21:01
forum for you to do that as well, but it's private, private
21:03
to the group, private to people that that can relate and know
21:07
what you're going through. So, you know, if you, if you, if
21:09
you want to go deeper and further, and I'm in there and
21:12
you know, you can ask me questions all day long as well,
21:14
but that's the inner circle. And it's just, there's a link in
21:16
the description and, and there's no pressure.
21:18
There's no pressure. And it's just, it's just, I
21:21
believe in it. I believe in community.
21:23
I believe in fostering community and I believe in being in
21:25
community. So it's sort of like, I believe
21:28
in getting you so much, I want y'all to join so we can all be
21:30
my friends and we can all hang out together and we do those
21:33
live calls every month. So.
21:35
But whatever it is and whatever it is, find your people because
21:41
you don't have to do this alone. You really don't.
21:44
OK, so now it's your turn. What's the one side effect you
21:48
wish someone had warned you about?
21:50
Drop in the comments and let's make it a conversation.
21:52
Not just a video or a podcast, a conversation.
21:54
And if this helped you or made you laugh or even maybe even
21:58
made you feel seen, give it a like, please share it with
22:01
someone who needs it and subscribe so we can keep having
22:03
these real unfiltered chats. And hey, I've said it, I'll say
22:06
it one more time. If you want to go deeper, come
22:09
on into my private community and come hang out with me and the
22:12
inner circle. OK, links in the description.
22:15
And above all else, thank you for watching.
22:16
Thanks for being part of the community.
22:17
Remember, this journey isn't easy, but we don't have to walk
22:21
it alone. I'll see you next time.
22:23
And until then, you keep doing life, and keep doing it today.
22:29
Parkinson's may be part of your life, but it doesn't get to
22:32
define it. Thanks for listening to Living
22:34
with Parkinson's, the good, the Bad, and the Reality.
22:39
If this episode moved you, helped you, or reminded you
22:42
you're not alone, share it with someone who needs to hear it.
22:46
Want to go deeper? The Inner Circle is waiting.
22:48
Monthly Zoom calls, 24/7 community, and a Direct Line to
22:52
Bryce. You'll find the link in the show
22:54
notes. Until next time, keep showing up
22:58
and keep doing life today.