Latest / Living with Parkinson’s | Bryce Perry / When Parkinson’s Hits Below the Belt: Let’s Talk Sexual Health with Parkinson’s

Transcript

When Parkinson’s Hits Below the Belt: Let’s Talk Sexual Health with Parkinson’s · 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. Let's talk about sex.
• 0:34
  Yeah, even with Parkinson's. Now, not exactly something you
• 0:39
  hear in the neurologist office, right?
• 0:41
  But if you've noticed changes in desire or performance or
• 0:45
  physical comfort, you're definitely not alone.
• 0:49
  Erectile dysfunction, vaginal dryness, loss of desire, or just
• 0:54
  feeling disconnected from your body or your partner.
• 0:58
  Well, these are real symptoms of Parkinson's.
• 1:01
  And they're not just aging, they're not just in your head,
• 1:05
  and they're not something to be ashamed of.
• 1:07
  So today, we're going there openly, honestly, and
• 1:12
  respectfully because connection, intimacy, and feeling wanted
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  still matter, and they matter more now than ever.
• 1:22
  Well, welcome back to the channel.
• 1:24
  I'm so glad you're here. And if you're new here, my name
• 1:27
  is Bryce, and this is living with Parkinson's.
• 1:28
  The good, the bad, and the reality.
• 1:30
  Now, this channel is about telling the truth about
• 1:33
  Parkinson's with no filters. We talk about the stuff that no
• 1:37
  one else is saying out loud because living with Parkinson's
• 1:39
  takes more than medication and exercise.
• 1:42
  It takes honesty, it takes community, and it takes support.
• 1:46
  OK, Today's episode is when Parkinson's hits below the belt.
• 1:50
  Let's talk sexual health. So before we begin, I want you
• 1:53
  to take a deep breath, OK? There's no shame here.
• 1:57
  Just real talk that might finally make you feel seen.
• 2:01
  All right, let's start with something really simple.
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  Sex is not just about sex, OK? It's about connection.
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  It's about confidence. It's about feeling attractive.
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  It's about feeling wanted, even when the body is changing all
• 2:18
  the time. And Parkinson's messes with it
• 2:21
  all, doesn't it? And not because you're doing
• 2:23
  anything wrong, but because the disease doesn't stop at
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  movement. It affect, it affects blood
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  flow, it affects hormone levels, it affects muscles, nerves,
• 2:33
  energy and mood. And yes, it affects
• 2:36
  relationships. OK, so let's break it down.
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  Men first. I don't know why men, but let's
• 2:41
  go with men first. Let's talk.
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  Erectile dysfunction is extremely common in Parkinson's.
• 2:47
  You might notice a delayed response, difficulty, it's
• 2:50
  difficulty staying erect, or even a loss of function.
• 2:54
  Now, it could show up early or it could show up much later.
• 2:58
  And it's not just physical stress.
• 3:01
  Fatigue, medications, and self-image all play a role.
• 3:06
  You know, there were times that I avoided intimacy altogether
• 3:10
  because I was worried it wouldn't work.
• 3:14
  I didn't want to disappoint, right?
• 3:17
  I felt it felt easier just not to try than to try and fail.
• 3:22
  But you know what's worse than feeling embarrassed?
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  It's feeling alone. And I don't want you to feel
• 3:28
  that. Now, for women, well, women face
• 3:32
  different. They, they, they face different,
• 3:34
  but just as real, real, the challenges.
• 3:37
  And they often get less attention.
• 3:39
  OK, things like vaginal dryness, pain during intercourse, a Lord
• 3:45
  libido and changes in the sense in sensation or orgasm.
• 3:51
  Now, let's be honest, many women with Parkinson's are also
• 3:54
  caregivers, right? So they're managing meds, the
• 3:57
  house, appointments, and sometimes for others too.
• 4:00
  And by the time intimacy is even possible, they're exhausted,
• 4:03
  disconnected, and maybe even resentful.
• 4:06
  And that's real and that's valid and it deserves attention, not
• 4:11
  shame. OK, now for everyone, even if
• 4:17
  the mechanics are OK, sometimes the feelings aren't right.
• 4:21
  You might feel less confident in your body.
• 4:24
  You might feel awkward about your tremors or your stiffness.
• 4:28
  You might be so conscious about facial masking or nervous about
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  freezing or dyskinesia mid movement or mid moment or just
• 4:37
  feel emotionally flat just because you know what, your
• 4:41
  dopamine is tanked and your partner might not know how to
• 4:46
  ask or how to help. But let me say this clearly, you
• 4:51
  are still worthy of connection. Your needs haven't disappeared.
• 4:56
  They've just they've just changed and that's OK.
• 4:59
  So the hardest part for me was bringing it up.
• 5:03
  So I want to give you a few ways to open the door.
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  Here's one right? You could say this.
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  I've been feeling a little disconnected.
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  Can we talk more a little bit about intimacy and what it looks
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  like now? Right.
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  Just some opening lines to get the conversation started.
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  Here's another one. This disease has changed a lot
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  for me and I miss feeling close to you.
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  Or maybe you could say I'm worried about how Parkinson's is
• 5:28
  affecting us physically and I want us to be OK now.
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  Listen, caregivers, caregivers and partners, listen with
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  compassion. Don't jump in with fixes, just
• 5:39
  listen. Be present because that's
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  everything. And if it's too hard to say,
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  then you know, what I would suggest is bring it, bring it,
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  bring it up at a doctor's appointment together.
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  Don't go by yourself because then you come home with a big
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  list of here's what you need to do and here's what we need to do
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  and and let's go in this together.
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  OK, Anyway, So what can help? Where are we at?
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  What are we going to do? Well, there are options.
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  There's a lot, you know, there's a lot more than people realize
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  for vaginal dryness. And I say this, you know, to be
• 6:10
  also checked with your, your doctor, all this always, you
• 6:13
  know, there's also, you know, menopause can play some, some
• 6:17
  part in this as well. So just make sure you check with
• 6:19
  your doctor. So for vaginal dryness, you can
• 6:22
  use lubricants like regularly, not just in the moment.
• 6:26
  You can ask your doctor about estrogen creams.
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  They seem to work really well, what I hear.
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  And there's pelvic floor therapy that can also help with the
• 6:33
  tightness or pain for men and erectile dysfunction, you know,
• 6:38
  meds like Viagra, Cialis may help, but only with your
• 6:42
  neurologist, OK, or your doctor's OK.
• 6:45
  And sometimes tweaking dopamine meds help too.
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  So again, always a talk with the doctor for everyone.
• 6:51
  Some of the things that you can try to do is you can try new
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  positions that don't strain your joints.
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  You know, be creative. Use pillows or wedges for
• 7:00
  support if you have to. And another thing you could try,
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  you know that that actually is I've heard helps really, it
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  really helps a lot is schedule your intimacy when your meds are
• 7:09
  working best, right? So when you're going to be at
• 7:11
  your peak performance so that you don't have to worry about
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  being embarrassed or not being able to perform, you schedule it
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  right. Here's a really good time for
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  this to start. OK, you could.
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  Another last tip here is focus on touch and closeness and
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  pleasure. It's not just about performance.
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  It's really not about performance at all, right?
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  It's really about pleasure, pleasure for you and your
• 7:33
  partner. So focus on that.
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  Focus on touch, the closeness, eye contact, soft, soft, just
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  just being close, OK. And you know, if, if these are
• 7:44
  things that you steal, that are really, really that you struggle
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  with or you're dealing with, well, you know what, there's a
• 7:48
  lot of professionals who can help you.
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  There are pelvic floor physio, OK, a urologist or gynecologist
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  that are familiar with Parkinson's are a big help sex
• 8:00
  therapist who specialize in chronic illness.
• 8:03
  Like this is a thing. It's not just a you thing.
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  It's a thing. And they're actual professionals
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  out there that will help. And remember, remember, really,
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  I want you to like, listen, remember this, this isn't about
• 8:13
  fixing it, right? It's about staying connected,
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  even if the connection looks different now.
• 8:20
  And I don't know, have you experienced changes in your
• 8:22
  sexual health since your, your diagnosis?
• 8:25
  Do you feel like no one's talking about it?
• 8:27
  You know, drop a comment below. And and if you'd rather keep it
• 8:30
  private, then you know, I'd invite you to the inner circle,
• 8:33
  right? It's our real confidential,
• 8:35
  judgement free community where you can chat and talk.
• 8:38
  It's not just it's not a Facebook group, it's not a face,
• 8:40
  it's not a zoom call. It's a space where you can ask
• 8:43
  the hard questions, share your experiences or just listen and
• 8:47
  feel seen. And you know what, yes, these
• 8:49
  kind of conversations, they'll happen there too, right?
• 8:52
  There's a link in the description below.
• 8:54
  You're invited. Take it's my invitation to you
• 8:56
  because sometimes you got to go deeper on these things.
• 8:59
  And sometimes in a public forum is probably not the best place
• 9:02
  in the confidential place where you're surrounded by people who
• 9:05
  get it, who have been there and are going through it.
• 9:08
  It it's the easiest spot. So do yourself a favor, check it
• 9:12
  out. Link in the description below.
• 9:14
  But here's something I want you to also also remember this, OK?
• 9:18
  That Parkinson's, it doesn't just, it doesn't erase desire.
• 9:23
  OK? It doesn't mean you stop needing
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  affection or closeness, but it does make those things harder to
• 9:30
  talk about. So today, guess what?
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  We talked. And if it felt awkward, that's
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  OK. That means it's real.
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  And real is where the healing starts.
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  Do you know that Parkinson's doesn't kill your sex life?
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  Silence does. There's a pricism for you.
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  So keep speaking up and keep seeking connection.
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  And as always, you keep doing life.
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  And you keep doing it today. Parkinson's may be part of your
• 10:01
  life, but it doesn't get to define it.
• 10:04
  Thanks for listening to Living with Parkinson's, the good, the
• 10:07
  bad, and the Reality. If this episode moved you,
• 10:11
  helped you, or reminded you you're not alone, share it with
• 10:14
  someone who needs to hear it. Want to go deeper?
• 10:17
  The Inner Circle is waiting monthly Zoom calls, 24/7
• 10:21
  community, and a Direct Line to Bryce.
• 10:24
  You'll find the link in the show notes.
• 10:26
  Until next time, keep showing up and keep doing life today.