Latest / Living with Parkinson’s | Bryce Perry / Is It Parkinson’s or the Pills? Symptoms vs. Side Effects Explained

Transcript

Is It Parkinson’s or the Pills? Symptoms vs. Side Effects Explained · Living with Parkinson’s | Bryce Perry

• 0:01
  They told him he had five good years left.
• 0:04
  That was 15 years ago. He's still standing, still
• 0:08
  speaking, still living. This is living with Parkinson's,
• 0:12
  The good, the bad, and the reality.
• 0:15
  A podcast about what happens when life throws you something
• 0:18
  incurable and you fight back anyway.
• 0:21
  Hosted by Bryce Perry, diagnosed at 4015.
• 0:25
  Years into the battle, This is the truth behind the tremor.
• 0:29
  Let's begin. Wait, what?
• 0:32
  My neurologist told me that my facial masking might be a side
• 0:35
  effect of levodopa and not Parkinson's itself.
• 0:39
  That completely threw me. And stick around to the end
• 0:41
  because I'm going to share some surprising side effects of
• 0:44
  Parkinson's meds that almost nobody talks about.
• 0:47
  And trust me, some of them are going to make your jaw drop.
• 0:51
  Literally. They told him he had five good
• 0:55
  years left. That was 15 years ago.
• 0:59
  He's still standing, still speaking, still living.
• 1:03
  This is living with Parkinson's. The good, the bad, and the
• 1:06
  reality. A podcast about what happens
• 1:09
  when life throws you something incurable and you fight back
• 1:12
  anyway. Hosted by Bryce Perry, diagnosed
• 1:16
  at 4015. Years into the battle, this is
• 1:19
  the truth behind the tremor. Let's begin.
• 1:24
  Hey there, I am so glad you're here.
• 1:26
  And whether you've been following along for a while or
• 1:28
  you just stumble across this podcast while searching for
• 1:31
  answers, welcome. I'm Bryce.
• 1:32
  This is living with Parkinson's, the good, the bad, and the
• 1:34
  reality. And this is a space where we
• 1:36
  talk honestly, we laugh when we can, and we lean on each other,
• 1:40
  lean on each other to make it through.
• 1:42
  You know, here we share stories, strategies and moments of real
• 1:45
  life truth about what it's like to live with Parkinson's and how
• 1:47
  to keep going even when your body isn't quite cooperating.
• 1:51
  So if that sounds like the kind of support that you need, hit
• 1:53
  that subscribe button and let's jump into today's episode.
• 1:57
  So I'm sitting there in my neurologist office, right,
• 2:01
  thinking about, you know, just thinking that we're going to go
• 2:03
  through and talk about the normal stuff, the meds, you
• 2:05
  know, maybe tweak the timing, the usual.
• 2:07
  And then mid conversation, I mentioned how I started noticing
• 2:11
  this facial masking more in the last six months.
• 2:13
  And you know, when your face just doesn't seem to show
• 2:16
  emotion like it used to. So that's what I was dealing
• 2:18
  with. That was my biggest kind of
• 2:20
  thing that was going on in my life here.
• 2:22
  And he's looks at me and he says, well, Bryce, that could
• 2:24
  actually be a side effect of levodopa.
• 2:27
  And I'm like, literally like, wait, what?
• 2:29
  I've had Parkinson's for 14 years.
• 2:31
  And all this time, I thought facial masking was just a
• 2:33
  symptom of the disease. I'm not being I'm not something
• 2:36
  being triggered or worsened by the very thing that's supposed
• 2:39
  to help me. You know, that moment really
• 2:41
  stuck with me. And it made me wonder how many
• 2:44
  other things have I blamed on Parkinson's that are really
• 2:46
  effects of the treatment? And that's what we're going to
• 2:49
  talk about right now. So let's get clear for a second,
• 2:52
  OK? Parkinson's symptoms are caused
• 2:54
  by the loss of dopamine in the brain, right?
• 2:56
  Bradykinesia. That's the slowness of movement,
• 2:59
  rigidity and stiffness. And yeah, those are my old
• 3:02
  friends. Tremors, balance problems that
• 3:05
  shuffling walk, sleep disturbances, anxiety and
• 3:09
  depression and facial masking. Well, maybe you know, these are
• 3:14
  all part of the disease. They happened before you start
• 3:17
  the medication. And I remember my early years,
• 3:19
  stiffness was the thing that really affected me.
• 3:21
  I had AI had a tremor after later, but again before I
• 3:25
  started my meds before I was diagnosed, but the cement like
• 3:28
  tightness that made everything harder, that stiffness, that was
• 3:31
  my major side effect and it still is today.
• 3:34
  It really is from all the way from the my right foot, my left,
• 3:38
  like my feet all the way up to everywhere.
• 3:41
  So side effects, OK, those come after you start treating the
• 3:45
  disease, especially with levodopa dopamine agonist.
• 3:49
  I can never say that, right? Right.
• 3:50
  Agonist, agonist, COCOMT inhibitors and MAOB inhibitors.
• 3:58
  They can sneak in gradually or they can hit you like a truck.
• 4:00
  So what are the common side effects of the, you know,
• 4:04
  Parkinson's meds? Here's what a lot of people deal
• 4:07
  with when they're on medication. OK, nausea.
• 4:10
  You know, that first month on levodopa felt like I was
• 4:12
  pregnant with striplets, right? Dizziness and low blood
• 4:16
  pressure. Dyskinesia, right?
• 4:18
  Dyskinesia, that's those involuntary wiggly movements
• 4:22
  that make you look like you're dancing badly at a wedding.
• 4:25
  And stay tuned. I have an entire episode.
• 4:27
  We're going to talk about dyskinesia.
• 4:29
  We kind of break it down a little bit.
• 4:31
  Hallucinations, visual, right? Or even I can't say it's right,
• 4:35
  but olfactory, you know smelling smoke when there's none impulse
• 4:41
  control issues like shopping, gambling and that well, let's
• 4:44
  just say other urges, insomnia, fatigue and brain fog.
• 4:49
  You know once I once I bought 3 snow shovels in one week 3
• 4:53
  three. Now I live in Winnipeg so some
• 4:56
  of you might think I need 3 but I only need one but in that
• 4:58
  moment it made perfect sense. I was like, you know, I could
• 5:02
  use one for this one. It's really heavy and one this
• 5:04
  way when it's lighter. And you know, anyway, it was
• 5:07
  just more compulsive behavior than anything.
• 5:09
  But anyway, let's talk a little bit about this facial masking,
• 5:14
  OK? Whether it be a symptom or a
• 5:17
  side effect. So traditionally, it's always
• 5:21
  been considered a motor symptom of Parkinson's.
• 5:23
  The same dopamine loss that affects your arms and legs and
• 5:26
  dulls that express, it also dulls that expression in your
• 5:29
  face. But now some neurologists like
• 5:32
  mine are saying that levodopa might actually worsen or trigger
• 5:36
  it in some people, like the way it interacts with certain muscle
• 5:40
  groups, especially the the small facial muscles face.
• 5:45
  My God. All right, let's say that again,
• 5:48
  the way it interacts with certain muscle groups, right,
• 5:51
  especially the small facial muscles could contribute to the
• 5:54
  masking look. So which one is it as a symptom
• 5:57
  or side effect? Well, truthfully, I think it's a
• 5:59
  little of both. You know, I didn't notice the
• 6:02
  masking very much until probably, I'm going to say a
• 6:06
  year ago now. I've been on, I was diagnosed
• 6:09
  almost 15 years ago, just a month or two away from my 15th
• 6:13
  anniversary or P DS birthday, whatever you want to call it.
• 6:16
  It's not a great celebration, but it's, you know, we'll do it.
• 6:20
  And so I didn't start recognizing this, this facial
• 6:23
  mask until probably about a year ago.
• 6:25
  So that's why I don't know, right?
• 6:30
  Like, which way, which way do you go?
• 6:31
  But anyway, so maybe Parkinson's laid the foundation and the meds
• 6:36
  added the finishing touch. That's why I'm saying a little
• 6:38
  of both. It's not exactly comforting, but
• 6:40
  at least it gives me a better lens to understand what's going
• 6:44
  on. And it also shows me that, you
• 6:47
  know, how our caregivers, our doctors, our neurologists, our
• 6:51
  researchers are finding some things now that are different.
• 6:55
  You know, there's a lot of things and, and statistics that
• 6:58
  have changed since I was diagnosed, like in the last 15
• 7:01
  years, even even with, you know, the percentage that it was
• 7:04
  genetic, right when I was first diagnosed 15 years ago, it was a
• 7:08
  lot lower than it is today. So, you know, maybe it's a
• 7:12
  little bit of both now, but what does that matter?
• 7:15
  Well, it matters because if we don't know whether something's a
• 7:18
  symptom or a side effect, how can we actually treat it
• 7:21
  properly? If it's a symptom, we might need
• 7:24
  more medication. If it's a side effect, we might
• 7:27
  need less or something different.
• 7:30
  Understanding that difference also helps the people around us,
• 7:32
  our partners, our caregivers, our kids, you know, it makes
• 7:35
  sense of what's going on. They're trying to help, but it's
• 7:39
  hard to keep up when the symptoms and the side effects
• 7:41
  look almost the same. And that's now that's why.
• 7:44
  What do I do? So what do I do?
• 7:45
  Here's what I do. I now keep this journal, right?
• 7:48
  I've talked about journaling before, but it's just a simple
• 7:51
  note app on my phone. So this one I have just on my
• 7:53
  phone, I use my note app and I just save it and I go back into
• 7:57
  it and all I put in there like what happened, what meds I took
• 8:00
  and how I felt and, and overtime patterns show up.
• 8:04
  And when I see my neurologist, it's not guesswork anymore.
• 8:06
  It's data. And remember I said I'm not
• 8:09
  looking for one time events, right?
• 8:11
  I'm not looking, Hey, I didn't sleep last night, you know, but
• 8:14
  I slept for the last month no problem.
• 8:16
  I'm looking for a consistent pattern in, in something
• 8:19
  happening to me. And when I see this thing
• 8:22
  happening and I, I kind of, I kind of do it like it's more
• 8:25
  than three times more than three times a month, right?
• 8:29
  If it's happening three or more times a month, then I start
• 8:32
  looking into my journal and OK, what's the pattern?
• 8:36
  How many, you know, what kind of medication I took?
• 8:38
  When did it happen? My off my on times?
• 8:40
  How did I sleep that night? No, I kind of dig deeper at that
• 8:43
  point. So as promised, I talked about
• 8:47
  the surprising side effects that you've probably never heard
• 8:49
  about and maybe you have in the comments.
• 8:51
  I want you to tell me after you hear these, were any of these a
• 8:54
  shocker to you? Did you have you heard of this
• 8:56
  before? Or maybe you have heard of it
• 8:58
  before? Maybe I'm just out in the left
• 8:59
  field, but but just play along in the comments.
• 9:02
  I love everybody interacting and become a community.
• 9:05
  That's what it's all about, right?
• 9:07
  And, and, and, and I want to know that I'm that, that I'm not
• 9:10
  the only one that was surprised by some of these.
• 9:12
  So, and, and by the way, if you're still here and you're not
• 9:14
  subscribed to the, to the podcast or the channel,
• 9:17
  subscribe. This is what we do.
• 9:19
  Let's just break this down. It's real, it's honest, it's we
• 9:21
  just, there's no fluff here, right?
• 9:23
  But anyway, let's talk about it again.
• 9:24
  It's a surprising side effects. OK, here's the part I told you
• 9:27
  to stick around for and this is it.
• 9:29
  These are the side effects most people don't know.
• 9:32
  Impulse control issues, not just restlessness.
• 9:37
  OK, not rest. We're talking about compulsive
• 9:39
  gambling, binge eating, hypersexuality and shopping.
• 9:41
  Like you've got a limited credit.
• 9:44
  And if something feels off, you know, if one of those things
• 9:46
  feels off or you, then that is something to talk to your
• 9:49
  neurologist or your doctor about immediately, right?
• 9:51
  It could not. Maybe it's not your fault.
• 9:53
  Maybe after all, it's not your fault.
• 9:54
  Maybe it's just the meds. But that's those things you need
• 9:56
  to tackle quick and honestly, as fast as you can.
• 10:00
  How about this one? Sudden sleep.
• 10:03
  Sudden sleep attacks, you can literally fall asleep mid
• 10:07
  sentence. And that's not just being tired,
• 10:09
  that's medication induced narcolepsy.
• 10:12
  That's what that is. So if you, if this is you don't
• 10:14
  drive, don't drive. And if you're listening to this
• 10:17
  podcast right now in your car, stop.
• 10:19
  Talk to your doctor about alternatives if that's
• 10:21
  happening. So here's another side effect of
• 10:25
  the myths, low blood pressure, right?
• 10:27
  Low blood pressure, orthostatic hypertension, you stand up and
• 10:32
  the world spins. And that's not Parkinson's.
• 10:34
  That's often a medication side effect.
• 10:36
  And some people use compression socks or hydration or meal time.
• 10:40
  You can help with that as well. And I, and I get that, you know,
• 10:43
  with my, I think I've told you before, my second, second dose
• 10:45
  or third dose right around like mid early afternoon, depending
• 10:48
  on when I woke up. And that one, if I don't have
• 10:51
  something in my tummy, man, I'm going for a spill.
• 10:54
  Here's 1A wild one. How about phantom smells,
• 10:58
  smelling things that aren't there, like smoke, garbage or
• 11:01
  perfume. That could be all olfactory, all
• 11:04
  olfactory, all olfactory hallucinations linked to meds
• 11:08
  like MAOB inhibitors. Inhibitors.
• 11:12
  That was a new one to me. Smelling.
• 11:13
  I mean, like, as long as that burnt toast, right?
• 11:16
  Anyway, how about this side effect?
• 11:19
  Jaw clenching or facial rigidity, you know, sometimes it
• 11:22
  feels like Parkinson's stiffness, but it can actually
• 11:25
  be in effect at the meds tightening those small muscle
• 11:27
  groups. And I guess your, your face just
• 11:29
  clenches right up like it's like tight and, and hard.
• 11:32
  And that's actually from the meds, right?
• 11:33
  So mention that to a neurologist or doctor because it might be
• 11:36
  fixable with a dosage tweak. You know, I wish someone had
• 11:40
  told me these things earlier, right?
• 11:42
  I spent too long blaming myself, thinking I was losing control
• 11:45
  when really I was just reacting to the medication.
• 11:47
  My body wasn't loving in some of these instances and that's why
• 11:50
  I'm sharing it here, right? Even if one of these made you
• 11:53
  go, Oh my gosh, that's me, then I'm glad we had this
• 11:55
  conversation. So now let's hear from you.
• 11:58
  Let's hear from the community. This is your part.
• 11:59
  This is where you jump in. Now, what's the one thing that
• 12:03
  you thought was a symptom of Parkinson's, but you later
• 12:05
  learned was a side effect? Or maybe you learned it today.
• 12:08
  Drop in the comments. Your story might act.
• 12:10
  It might be exactly what someone else needs to hear today.
• 12:13
  You know, I find that and I get a lot of DMS and comments that
• 12:17
  people are like they, they watching, they're watching me or
• 12:19
  listening to me, but really they're getting so much other
• 12:21
  comments. They're hearing what others are
• 12:23
  going through and they're like, that's me, That's me.
• 12:24
  And they're feeling less alone. So this community that we're
• 12:27
  doing, you know, get involved, be a part of it.
• 12:29
  And again, if you're new here and you've never comment or
• 12:31
  maybe you're not, maybe you've never comment before, come on
• 12:34
  out and say, Hey, I'm telling you, it's powerful.
• 12:37
  And if this helped you at all, you know, give it a like and
• 12:39
  share it with your Parkinson's group if you're in one or send
• 12:42
  it to a friend who needs to hear this.
• 12:43
  And if you want to go deeper in this community, then join us in
• 12:47
  the inner circle. We do monthly live video chats.
• 12:51
  You know, we go behind the scene videos, we talk real.
• 12:53
  It's a private group, no pressure.
• 12:55
  There's no pressure. There's just support.
• 12:57
  So if you want something more, if you want to go deeper, you
• 12:59
  want to go harder in this, you want to learn a little bit more.
• 13:02
  And you can also DM me there as well.
• 13:03
  And there's AQ and a section just for me.
• 13:05
  And it's really where I can really interact and really get
• 13:07
  personal and, and really help. And we've become like a, it's
• 13:10
  become mean, like, like it's like a support group, right?
• 13:14
  So if you don't have that support, you don't have the
• 13:15
  community. I'm going to tell you right now,
• 13:17
  it's just so important. It is so, so important.
• 13:20
  So take that step. The links in the description
• 13:23
  below come out and join us. And you know, take the walk with
• 13:28
  us, do some life with us. But anyway, thanks for being
• 13:31
  here no matter where it is. Thank you for sharing this room
• 13:33
  with me. And as always, keep doing life
• 13:36
  today. Parkinson's may be part of your
• 13:44
  life, but it doesn't get to define it.
• 13:46
  Thanks for listening to Living with Parkinson's, the good, the
• 13:50
  bad, and the reality. If this episode moved you,
• 13:53
  helped you, or reminded you you're not alone.
• 13:56
  Share it with someone who needs to hear it.
• 13:59
  Want to go deeper? The Inner Circle is waiting.
• 14:02
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 14:05
  Bryce. You'll find the link in the show
• 14:07
  notes. Until next time, keep showing up
• 14:11
  and keep doing life today.