Latest / Living with Parkinson’s | Bryce Perry / Impulse Control Disorders: The Shocking Side Effect Nobody Talks About

Transcript

Impulse Control Disorders: The Shocking Side Effect Nobody Talks About · Living with Parkinson’s | Bryce Perry

• 0:00
  Parkinson's can steal your movement, but sometimes the
• 0:03
  medication can steal your judgement.
• 0:05
  I'm talking about impulse control disorders, the side
• 0:08
  effect hardly anyone warns us about.
• 0:10
  We're talking about gambling, overspending, binge eating, even
• 0:13
  risky behavior that totally feels out of character.
• 0:16
  And the scary part? It can sneak up on you years
• 0:19
  after starting the meds. So today we'll share what it
• 0:21
  looks like, how to spot it, and what to do if it happens.
• 0:25
  And stick with me till the very end because I've got a Bryce ISM
• 0:27
  about Parkinson's meds that you will not forget.
• 0:31
  Welcome to Living with Parkinson's, The Good, the Bad,
• 0:35
  and the Reality. Real talk, real life, real
• 0:39
  community with Bryce Perry. Let's begin.
• 0:44
  Well, welcome back to Doing Life Today.
• 0:46
  I'm Bryce and this is living with Parkinson's, The good, the
• 0:48
  Bad and the Reality. Now let's talk about one of the
• 0:51
  most shocking and misunderstood Parkinson's side effects,
• 0:54
  impulse control disorder or ICDS.
• 0:58
  Now I'll get real with you. I've been on dopamine agonist
• 1:02
  for years and thankfully I haven't had that big, that big
• 1:06
  of issues as some people face. But I did notice little signs
• 1:09
  here and there times when I got hyper focused on something.
• 1:12
  And Carmen would have to like, give me that look.
• 1:15
  You know that look, that look that says, you know, Bryce,
• 1:18
  maybe take a break. Look, you know, sometimes our
• 1:20
  loved ones catch things before we even realize what's happening
• 1:23
  ourselves. So what exactly are impulse
• 1:28
  control disorders? Well, again, they're ICDS.
• 1:31
  You might hear that as well. But basically, they're
• 1:34
  compulsions caused by Parkinson's meds, usually the
• 1:37
  dopamine agonist. Agonist, right?
• 1:40
  The same chemical that helps us move can also kick the brain
• 1:44
  into OverDrive. And I don't mean grabbing an
• 1:46
  extra cookie or buying one extra shirt.
• 1:48
  I'm talking about urges and behaviors that feel completely
• 1:52
  out of character, like things like gambling, you know,
• 1:55
  casinos, online poker, sports betting.
• 1:58
  You know, people who've never gambled before suddenly spending
• 2:01
  hours and losing money. Another one could be compulsive
• 2:05
  shopping, you know, boxes arriving at the door, credit
• 2:08
  cards maxed out, and you're standing there saying, when did
• 2:11
  I even order this? Another great big one is
• 2:15
  hypersexuality. You know, changes that are
• 2:18
  sudden, intense and can cause real strain in relationships.
• 2:23
  You know, then there's binge eating, you know, raining in the
• 2:25
  pantry like a midnight zombie or obsessing over hobbies, hours
• 2:30
  lost, unable to walk away. You know, here's what shocked me
• 2:33
  the most. I know someone who was fine for
• 2:36
  more than a decade on the same medication, no issues at all.
• 2:40
  Then out of nowhere they developed a gambling problem
• 2:43
  that nearly wrecked their marriage and their finances 10
• 2:46
  years in. That's why it's so sneaky.
• 2:50
  So let me ask you this. Has your doctor ever warned you
• 2:53
  about impulse control disorders? Drop a yes or a no in the
• 2:57
  comments. Your story might be the one that
• 2:59
  saved somebody else from going through this, but just a quick
• 3:02
  yes or no. Now, I've heard stories from the
• 3:06
  community that break my heart. You know, one guy who had never
• 3:10
  even been to a casino started sneaking out at night gambling
• 3:13
  away his savings. Another one where a woman who
• 3:17
  always managed money carefully racked up thousands on online
• 3:20
  shopping and she couldn't even remember ordering some of the
• 3:23
  stuff. And then there's the caregiver
• 3:25
  side. Imagine being a spouse and
• 3:27
  suddenly the person you've known for decades is acting like a
• 3:30
  stranger. You know, Carmen and I talk a
• 3:32
  lot about this, how important it is for for care partners to feel
• 3:36
  safe enough to say something's off.
• 3:40
  And that's why conversations like this matter.
• 3:43
  This isn't about shame, it's about awareness.
• 3:46
  So let me give you some signs to look for, You know, how do you
• 3:51
  spot it? Well, here are the red flags to
• 3:53
  keep an eye on #1 is sudden gambling urges again not normal,
• 3:58
  out of the ordinary and urgent like urging you have to do it.
• 4:03
  Compulsive shopping or packages arriving constantly.
• 4:08
  And when it comes to sexual behavior, I mean, it's, it's big
• 4:11
  changes in that sexual behavior that have come out of the blue.
• 4:15
  That's the things to look for. Eating binges, not overeating.
• 4:19
  Like binges, like things where you can't stop.
• 4:21
  It's compulsive. Or this is a sneaky one too.
• 4:26
  Hours lost to hobbies where you just can't stop or on your
• 4:31
  phones or social media or your computer where you'd look around
• 4:35
  and all of a sudden you realize hours have gone by and you
• 4:37
  didn't even realize it. And here's the number.
• 4:41
  And here's the number that should make us all set up.
• 4:43
  OK. Studies show that anywhere from
• 4:45
  14 to 30% of people on dopamine agonists will experience impulse
• 4:53
  control disorders. Now, that's like 3 in every ten
• 4:57
  of us. That's not rare.
• 5:00
  That's a big deal. Now, if I could flash those
• 5:04
  numbers on the screen right now, 14 to 30%, I would, because I
• 5:09
  want those numbers to be burned in your minds.
• 5:13
  OK, So what do you do if you notice these signs?
• 5:16
  OK, well, let's get practical. First thing you have to do is
• 5:19
  talk to your doctor. And you have to be brutally
• 5:21
  honest. I know it's embarrassing, but
• 5:23
  you're neurologist, Your doctor has heard it before.
• 5:26
  I've met people who hid, hid it out of shame, and by the time
• 5:30
  they came clean, the damage was done.
• 5:32
  It was huge. So don't wait.
• 5:35
  Second, involve your partner or your caregiver.
• 5:39
  You know, Carmen has noticed things in me long before I did.
• 5:42
  And sometimes denial blinds us. The people around us will see it
• 5:47
  first. Third, track your behavior.
• 5:51
  Write it down, journal it. Note when the urge is hit.
• 5:56
  Was it after a certain dose? Was it late at night?
• 5:58
  Was it after stress? Those patterns will give your
• 6:02
  doctor something to work with. The fourth thing you do is you
• 6:06
  may medic medication adjustments may be needed.
• 6:10
  You know, sometimes the the fix is as simple as lowering the
• 6:12
  dose. Other times it's switching to a
• 6:14
  different Med. I've seen people with IC DS
• 6:17
  vanish. I've seen their IC DS completely
• 6:19
  vanish once the balance was right.
• 6:23
  And then the fifth thing to do, if none of that's working,
• 6:26
  safeguards. This is practical stuff.
• 6:29
  I mean, if gambling is an issue, give your spouse control the
• 6:31
  debit card. If shopping is the issue, freeze
• 6:34
  your credit cards or set spending limits.
• 6:36
  You know, if it's eating, don't stock the house with trigger
• 6:39
  foods. These aren't punishments,
• 6:41
  they're protections for you. And here's a bonus, community
• 6:46
  support if you're struggling, there are hotlines that there's
• 6:49
  groups. Sometimes just saying it out
• 6:51
  loud to people who understand lifts the weight.
• 6:56
  It's amazing. It's just amazing how that
• 6:58
  works. But here's something that most
• 7:00
  people don't realize. Impulse controls disorders.
• 7:03
  Disorders don't always show up right away.
• 7:06
  They can creep in years after you've been, you've been fine,
• 7:10
  you know, And I'll share another story about that in just a
• 7:13
  second. Now, if you think doctors should
• 7:17
  be warning us about this way more often than they do, then do
• 7:21
  me a favor. Hit that like button so this
• 7:22
  message is spread further because I think doctors should
• 7:26
  warn us about this way more often and make it clear.
• 7:30
  And here's another question for you.
• 7:32
  Has your partner a friend or your care?
• 7:33
  Your partner or your kids? Anybody ever called you out on
• 7:38
  something that you didn't even realize you were doing?
• 7:40
  Share that story in the comments because that comment might be
• 7:43
  the one that makes someone else connect the dots.
• 7:48
  OK, back to the story. The person I mentioned who
• 7:51
  developed the gambling issues 10 years in, the only reason it got
• 7:55
  caught was because their spouse noticed it, right?
• 7:58
  They got honest with their doctor, then they switched meds
• 8:02
  and things leveled out. But it nearly cost them
• 8:04
  everything. And that's the thing.
• 8:07
  This can sneak up years into treatment.
• 8:09
  So don't assume just because you've been fine that you're
• 8:12
  immune. You always, always, always have
• 8:15
  to keep an eye out for this. And you know what?
• 8:18
  Let's not forget the emotional toll.
• 8:21
  For the person going through it. There's shame, confusion, guilt,
• 8:25
  and for the partner, there's fear and sometimes anger.
• 8:29
  Now imagine suddenly not recognizing the person you love.
• 8:32
  That's why awareness, honesty and open conversations are so
• 8:35
  important. No one should go through this in
• 8:39
  silence. No one should.
• 8:42
  So here's the take away. Parkinson's meds can give us,
• 8:47
  you know, give us some of our movement back, right?
• 8:50
  But they also can bring challenges.
• 8:52
  Impulse control disorders are one of those hidden ones.
• 8:55
  And the more we talk about them, the more we protect each other.
• 9:00
  And that's so important. And you made it this far.
• 9:04
  Thank you. But you've unlocked the prices.
• 9:07
  And yes, I do have one. And here it is.
• 9:09
  Parkinson's meds might help us move, but we've got to keep an
• 9:13
  eye on where they move us. And if this video gave you
• 9:18
  something to think about, please hit like and share it with
• 9:20
  somebody who needs to hear it. And let's keep the conversation
• 9:23
  going. Have you or someone you know
• 9:26
  ever experienced these impulse control issues with Parkinson's?
• 9:30
  Your story might be the lifeline for somebody else.
• 9:33
  Now, I know some of these are hard to talk about.
• 9:35
  Some may be embarrassing and you may be ashamed of it yourself,
• 9:38
  but it's OK. We've all been there.
• 9:40
  So if you want this deeper connection, you want to be able
• 9:43
  to talk about these things in private with people that get it
• 9:46
  with me and people, other people who get it and have gone through
• 9:49
  it, then you got to come to the inner circle.
• 9:52
  It's a private community where we talk live on Zoom and where
• 9:54
  we share stories and remind each other that we're not in this
• 9:57
  alone, right? And it's available 24/7 And
• 10:01
  people are my phone is actually going off at night now as I can
• 10:03
  see people putting posts and helping each other in the inner
• 10:06
  circle. So please, the link's in the
• 10:08
  description and I'm there's no pressure, but it's, it's good
• 10:12
  for you. OK.
• 10:14
  And until then, and until next time, keep showing up, keep
• 10:18
  being real, and keep doing Live Today.
• 10:24
  Parkinson's may be part of your life, but it doesn't get to
• 10:27
  define it. Thanks for listening to Living
• 10:29
  with Parkinson's, the good, the bad, and the reality.
• 10:33
  If this episode moved you, helped you, or reminded you
• 10:37
  you're not alone. Share it with someone who needs
• 10:39
  to hear it. Want to go deeper?
• 10:42
  The Inner Circle is waiting. Monthly Zoom calls, 24/7
• 10:45
  community, and a Direct Line to Bryce.
• 10:48
  You'll find the link in the show notes.
• 10:50
  Until next time, keep showing up and keep doing life today.