Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s Doctor Visits: How to Use Your Tracking to Finally Get Real Results

Transcript

Parkinson’s Doctor Visits: How to Use Your Tracking to Finally Get Real Results · Living with Parkinson’s | Bryce Perry

• 0:00
  With Parkinson's, every one of us eventually reaches that
• 0:02
  moment in the doctor's office where we think, why does it feel
• 0:06
  like my neurologist and I are having 2 completely different
• 0:10
  conversations? You're sitting there talking
• 0:12
  about stiff legs, random tremors, weird dips in energy,
• 0:16
  and they're talking about timelines and dosages and let's
• 0:20
  keep an eye on it. Well, I've been there so many
• 0:24
  times and honestly for years I walked out feeling unheard or
• 0:27
  like I forgot half the things I wanted to say.
• 0:30
  And now this week, so many of you have messaged me saying the
• 0:32
  exact same thing. Hey Bryce, I finally am tracking
• 0:35
  my meds and my symptoms, but what do I do with it?
• 0:38
  How do I explain this to my doctor without freezing up and
• 0:41
  wasting an appointment? Well, guess what?
• 0:44
  Today we're turning your tracking data into a powerful
• 0:46
  tool that will finally get the answers you need.
• 0:49
  And boy do we have a surprise for you today.
• 0:52
  Stick around to the very end because someone's joining me
• 0:55
  that might have what they think is better than a bright system.
• 1:01
  Welcome to Living with Parkinson's, The Good, the Bad,
• 1:05
  and the Reality. Real talk, real life, real
• 1:09
  community with Bryce Perry. Let's begin.
• 1:13
  All right, well, welcome back to the channel, everybody.
• 1:15
  And if you're new here, my name is Bryce.
• 1:17
  And this is living with Parkinson's, The good, the bad,
• 1:19
  and the reality. Now, this channel is all about
• 1:22
  providing strength, hope, and support to individuals who are
• 1:25
  living with Parkinson's and their caregivers.
• 1:28
  You know, we share motivational stories, tips and insights to
• 1:32
  help you navigate life with Parkinson's.
• 1:34
  So if you're looking for this kind of content, make sure to
• 1:37
  subscribe because you don't want to miss an episode.
• 1:40
  Now, today's program, how to take your tracking to your
• 1:43
  doctors and actually get results.
• 1:45
  And I'm going to give you the secret sauce today.
• 1:48
  OK, so let's get into this and let's be honest, a doctor gets
• 1:52
  what, maybe 1520 minutes with us and that's on a really good day.
• 1:56
  Meanwhile, Parkinson's is doing its thing 24 hours a day, seven
• 2:00
  days a week. So when you walk in and and they
• 2:03
  say to you, how have things been since our last visit?
• 2:07
  And you know, your brain does that panic thing like good, bad.
• 2:10
  Tuesday was weird. I think I was stiff at 2.
• 2:12
  I didn't sleep on Thursday. Maybe that was Wednesday.
• 2:16
  You know, that's the part where we were half of us look at our
• 2:18
  caregiver like we're phoning a friend on who wants to be a
• 2:20
  millionaire. Like hell, please help me,
• 2:22
  right? Tracking takes away the
• 2:25
  guesswork, right? If your it gives your doctor a
• 2:28
  map instead of a mystery. And doctors love data,
• 2:31
  especially when it's simple, visual, and makes their job
• 2:35
  easier. And you know what?
• 2:37
  You don't need to have some crazy complicated system, right?
• 2:41
  You don't need to be walking into your doctor's office with
• 2:43
  10 pages and rolled up things under your arms like you don't
• 2:46
  need colours and stickers and bullet journals and things that
• 2:49
  look like they belong on Pinterest.
• 2:50
  You need to know three things. Number one, you need to know
• 2:53
  when you take your meds #2 you have to know when those symptoms
• 2:57
  start showing up after you take them or start going away, and
• 3:00
  anything that affects your symptoms.
• 3:02
  And that's it. Those are the three big things,
• 3:05
  right? And you could see those in
• 3:06
  episode 1, in episode 2. And this is where the tracker
• 3:09
  and the download download becomes your CHEAT SHEET, right?
• 3:12
  Because you start showing patterns, not paragraphs.
• 3:16
  Can you imagine? Like you walk in, right?
• 3:18
  And you, you know, you walk in and you got this, your journal,
• 3:22
  and you're going to pull out your journal.
• 3:23
  And the doctor sitting there kind of looking like, oh boy, oh
• 3:25
  boy, oh boy. You know, like I've got, I'm
• 3:27
  already 20 minutes behind schedule.
• 3:29
  When's the last time you've been to a doctor's that you've gone
• 3:32
  on time at your appointment time?
• 3:35
  Hashtag Doc. Always late, Doc, always late.
• 3:40
  And that one is for my doctor. So he knows he's not alone, just
• 3:44
  teasing, but you want to go in like a pro, right?
• 3:47
  You don't want to go with a with a journal.
• 3:48
  And also they're going to get start getting stressed out
• 3:50
  thinking that holiest man, you're going to read them the
• 3:52
  last six months of what you know, since they saw you.
• 3:55
  Here's the trick. They don't want to know your
• 3:57
  whole day. They want the highlights, right?
• 4:00
  That's going to help them adjust the plan.
• 4:03
  So here's your exact script. And this is what I use.
• 4:06
  You can usually use literally use this.
• 4:08
  You're ready for this. Here's what I tracked this
• 4:11
  month. My medication is usually kicking
• 4:13
  in around blank and wearing off around blank.
• 4:18
  I'm noticing more stiffness, tremors, dyskinesia, whatever
• 4:21
  your symptoms are around blank and here are the days where
• 4:25
  something was different. Boom.
• 4:28
  Clear, simple, actionable, right?
• 4:32
  They may ask follow up questions, but now you frame the
• 4:35
  conversation around patterns and not random movements.
• 4:39
  You see, tracking shifts you from a passenger to a copilot.
• 4:45
  Now let me give you a little quick story.
• 4:48
  Now there was a stretch where my stiffness kept sneaking up
• 4:52
  earlier every afternoon, right? But every time I went to the
• 4:55
  doctor, I couldn't remember exactly when.
• 4:58
  So I just kept saying vague things like, yeah, sometimes
• 5:02
  it's, you know, rough, you know, mid, mid afternoons, right?
• 5:06
  And that didn't help anyone. He'd asked me.
• 5:08
  Well, but you know, do you, do you remember?
• 5:10
  Did you sleep the night before? Did you have something to eat?
• 5:13
  Can you tell me how was your mood?
• 5:15
  Like he's asking me the same things, right, That you're going
• 5:19
  to be tracking. Think about that for one second,
• 5:21
  right. And just how about a ha in the
• 5:25
  comments? If you if that never really
• 5:26
  started to resonate there, he's going to ask you what you're
• 5:29
  tracking. OK, so once I started tracking
• 5:33
  though, I realized it really wasn't mid afternoon.
• 5:37
  It was every day around 2:40, almost on the dot.
• 5:40
  And that's how I took my meds at the same time every day.
• 5:42
  And when I brought that to my neurologist, he immediately
• 5:46
  said, OK, well that tells me your meds are wearing off too
• 5:49
  fast because, you know, I looked at, you know what time you took
• 5:51
  them. So let's shift the timing.
• 5:54
  Boom, 2 minutes. That's all that conversation
• 5:57
  took. Two minutes.
• 5:59
  Tracking saves time, and more importantly, tracking gets
• 6:03
  results. Now, how would you like to have
• 6:05
  all that done in 2 minutes? And, and you know what's wild?
• 6:09
  When your doctors start to trust that they know what you're
• 6:12
  doing, like you know what you're doing and you're tracking stuff,
• 6:14
  they give you all the leeway you want.
• 6:16
  My doctor and I have a wonderful relationship.
• 6:18
  You know, a lot of times he's like, OK, you know what?
• 6:21
  If you think in this situation, you need to add some more or, or
• 6:23
  increase your dosage or shorten your times, you do it, write it
• 6:27
  down. You don't let me know and catch
• 6:28
  me back up. And, and when we see you in six
• 6:30
  months, he trusts me like that. So we built that trust because
• 6:33
  he knows what he knows. I'm looking for the right stuff.
• 6:35
  Does that make sense? OK, so if if now, if you're
• 6:39
  getting value out of this so far, you know, hit that
• 6:41
  subscribe button and listen, tell you what, if you're liking
• 6:43
  this so far, everybody please smash that like button.
• 6:46
  Let's hit that like button. And that will send this video
• 6:49
  out to more people that need it. And now what I teased about you
• 6:52
  in the beginning, you never believe who we got coming up
• 6:56
  here, but this is it's time for Carmen's care partner corner.
• 7:00
  And with that, I introduce you or I reintroduce you to my wife,
• 7:05
  Carmen. Hi, everyone.
• 7:08
  It's Carmen. I'm back, and welcome to
• 7:10
  Carmen's Care Partner Corner. I want to talk to you about what
• 7:14
  it's like going into those neurologist appointments as the
• 7:18
  care partner because if you've ever been in the room, you
• 7:22
  already know those appointments move fast.
• 7:25
  And sometimes the person you love forgets things, downplays
• 7:28
  things, or just wants to get out of there as quickly as possible.
• 7:32
  Bryce, I used to sit in those appointments thinking this isn't
• 7:36
  the whole story. The doctor isn't seeing what I'm
• 7:39
  seeing at home. And that can be tough because
• 7:42
  you want to help, but you also don't want to take over.
• 7:46
  Tracking changed everything for us.
• 7:49
  When Bryce walks in with his on times, off times, patterns and
• 7:54
  give, it gives something solid to talk about with the doctor.
• 7:58
  Not guesses, not sometimes, not maybe.
• 8:02
  Real numbers, real moments, real examples.
• 8:06
  And it opens the door for me to gently add what I've noticed
• 8:10
  without feeling like I'm correcting him.
• 8:13
  And if you're a care partner, here's what I want you to know.
• 8:17
  Your voice matters in that appointment.
• 8:19
  Not to speak for them, but to speak with them.
• 8:23
  You see things they don't always feel in the moment.
• 8:27
  You see the hesitations, you see the fatigue, you see the frozen
• 8:32
  mornings, you see the rough evenings.
• 8:35
  And sharing those observations doesn't take anything away from
• 8:38
  them. It helps the doctor see the full
• 8:41
  picture. Most importantly, remind them
• 8:44
  not to minimize their symptoms. Bryce People with Parkinson's
• 8:49
  are tough. Sometimes they're a little too
• 8:51
  tough in front of the doctor, and your calm honesty can be
• 8:55
  that thing that gets them the help they actually need.
• 8:59
  All right, well, since I'm live on camera, I guess I better give
• 9:03
  you a Carmen ISM. And personally, I think I'm
• 9:06
  better at them than Bryce. But, you know, that's my
• 9:08
  opinion. It's a competition that we seem
• 9:11
  to be having with each other. Anyway, the Carmen ISM of the
• 9:14
  day, a good care partner isn't there to fight the battle for
• 9:18
  you. We're just there to make sure
• 9:20
  you don't go into the neurologist with the confidence
• 9:23
  of a wet noodle. And the twist?
• 9:26
  If I don't say something, Bryce absolutely will walk in there
• 9:29
  acting like he's competing for Patient of the Year.
• 9:33
  And that's a true story. Take care, everybody.
• 9:37
  Well, thank you, Carmen. I think thank you.
• 9:41
  So she she said right on there. Didn't she say like I think I'm
• 9:44
  better at it at the time. Wow.
• 9:46
  OK, all right, there you go. Anyway, that was awesome.
• 9:48
  Thank you so much. Great.
• 9:49
  Carmen is and by the way, give her a heart and a comments for
• 9:51
  that one. That was pretty cool.
• 9:52
  But let's talk about though, how to bring your tracker to the
• 9:56
  appointment. OK, And here are three options
• 10:00
  and you can pick whichever one works best.
• 10:01
  But I'll give you 3 options. Number one, you can print it out
• 10:05
  right? Print the tracker and circle the
• 10:06
  most important stuff. OK, Simple, clear and visual.
• 10:11
  Don't again, don't bring it in 100 pages, right?
• 10:14
  Just print it circle. You know what you want to
• 10:16
  circle. Boom, quick, fast.
• 10:18
  You can find it quickly to let them know.
• 10:20
  Option number 2 is take a photo of the tracker every day and
• 10:24
  make a little album on your phone, right?
• 10:26
  And just cut and paste if you're good at that stuff I'm not that
• 10:28
  great at. But if you can cut and paste to
• 10:30
  make a little collage, you know, doctors love seeing real time
• 10:33
  snapshots. It's like boom boom boom.
• 10:36
  And option 3, just bring the sheet and highlight one week
• 10:39
  that shows your pattern. And why.
• 10:41
  Why is that? Because doctors often build the
• 10:44
  plan from your most consistent week, right?
• 10:47
  Not the one off weird days. Tell your doctor.
• 10:51
  Let me show you this week. This is the clearest picture of
• 10:54
  what happens most often. And what you're doing is you're
• 10:59
  helping them help you. OK, Now I know many of us, you
• 11:05
  know, myself included. We were raised, especially in
• 11:08
  Canada, to be polite and not bother people.
• 11:10
  So how do you advocate, advocate for yourself without feeling
• 11:13
  pushy? Right on your doctor.
• 11:15
  Well, here, listen, I'm just going to be brutally blunt,
• 11:19
  honest with you. This is your life, OK?
• 11:23
  This is your life. This is your daily functioning.
• 11:26
  This is your body. So here's a sentence that that's
• 11:30
  respectful but firm. Based on my tracking, I think it
• 11:34
  would help to adjust either my dose or my timing.
• 11:37
  What options do you recommend? Period.
• 11:41
  You're not telling them what to do.
• 11:43
  You're inviting a professional solution, and trust me,
• 11:48
  neurologists respond really well to this.
• 11:51
  Now, what about things that you should never say?
• 11:53
  Well, I'll tell you what, never walk into an appointment and say
• 11:58
  I don't know, things are just off or I'm doing OK, I guess, or
• 12:04
  I forget, you know, I forget when things happen.
• 12:08
  Tracking replaces vague with specific and specific creates
• 12:13
  solutions. OK, here's a look at a simple
• 12:18
  handwritten tracker from this week.
• 12:20
  OK, nothing fancy, just scribbles.
• 12:23
  And honestly, because Parkinson's is messy, your
• 12:26
  tracking doesn't need to be pretty, but it just needs to be
• 12:31
  real and boom, that is it. Can you believe it?
• 12:34
  It's that simple. It's that simple.
• 12:37
  Now you have to be firm, but you have to be very organized and
• 12:40
  ready to go. You got your doctor has to feel
• 12:42
  trust that you understand what you're tracking.
• 12:44
  You understand what what it is you need, OK.
• 12:48
  And you're you're using them as a vessel, like a resource.
• 12:51
  OK, If you walk in there again, vague, you're going to walk out
• 12:54
  with no answers because they're going to tell you to.
• 12:56
  They're going to ask you a bunch of questions, the same things
• 12:58
  that you already have the answers to, and then they'll
• 13:00
  say, OK, let's check, check back with me next time and let's see
• 13:03
  if it's still happening. And then you've got another 3456
• 13:06
  months with no change. Life's too short for that and
• 13:10
  you need to start. You need to start running your
• 13:12
  life, but you really do. So don't back down.
• 13:15
  Don't be shy, don't be rude, but don't be shy and don't
• 13:19
  overcomplicate this. Don't overcomplicate it.
• 13:22
  Look at the sheet I just showed you.
• 13:23
  It's handwritten. It's just boom, bam.
• 13:25
  It's a couple circles. It's just all you have to do.
• 13:28
  That's all you do. And I tell you it's going to
• 13:31
  change. It's going to change your
• 13:32
  relationship with the doctor and it's going to change your
• 13:33
  relationship with with your your body levodopa and you're going
• 13:37
  to feel so much more in control. It's just amazing.
• 13:40
  Let you're going to control the Parkinson's and what's happening
• 13:42
  to you rather than sitting back and just wondering what's
• 13:44
  happened to you. All right, you made it this far.
• 13:47
  So here is your Bryces of the episode with Parkinson's.
• 13:52
  Your doctor might be the expert, but you are the evidence.
• 13:58
  How do you like that anyway? If this helped you hit that like
• 14:02
  button so more you. So YouTube knows that other
• 14:04
  people with Parkinson's need to see this too and drop a comment
• 14:07
  and let me know this. Are you bringing your tracker to
• 14:10
  your next appointment? I'd really like to know.
• 14:12
  And if you want more support, more tools, and more community,
• 14:15
  they need to join us in the inner circle.
• 14:17
  It's a beautiful space for full of people who actually get it.
• 14:21
  Well, there you go. That's it.
• 14:22
  And you know what? It's that time again.
• 14:25
  Until next time, I want you to keep showing up.
• 14:27
  I want you to keep being real. I want you to keep tracking.
• 14:30
  I want you to keep being tough. And I want you to fight for
• 14:32
  yourself. And I want you to do life and I
• 14:34
  want you to do it today. We'll see you next episode.
• 14:37
  Love you guys. Parkinson's may be part of your
• 14:40
  life, but it doesn't get to define it.
• 14:43
  Thanks for listening to Living with Parkinson's, the good, the
• 14:46
  bad, and the Reality. If this episode moved you,
• 14:50
  helped you, or reminded you you're not alone, share it with
• 14:54
  someone who needs to hear it. Want to go deeper?
• 14:57
  The Inner Circle is waiting monthly Zoom calls, 24/7
• 15:00
  community, and a Direct Line to Bryce.
• 15:03
  You'll find the link in the show notes.
• 15:05
  Until next time, keep showing up and keep doing life today.