Latest / Living with Parkinson’s | Bryce Perry / 5 Things I Wish I’d Known Before Starting Parkinson’s Medication

Transcript

5 Things I Wish I’d Known Before Starting Parkinson’s Medication · Living with Parkinson’s | Bryce Perry

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  If I could go back 15 years and hand myself a CHEAT SHEET for
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  starting Parkinson's medication, wow, would I have saved me a lot
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  of frustration and maybe a few awkward dinners.
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  Well, today I'm sharing the five things that I wish I'd known
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  before taking my first dose. The things that people only
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  learn the hard way and stick around to the end for today's
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  prices. Because it's one that I wish
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  someone had told me the day that I first swallowed my first pill.
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  Welcome to Living with Parkinson's, The Good, the Bad,
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  and the Reality. Real talk, real life, real
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  community with Bryce Perry. Let's begin.
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  Well, welcome back to the podcast and I want to thank all
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  my loyal viewers and the inner circle for coming back.
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  And if you're new here, my name is Bryce and this is Living with
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  Parkinson's, The Good, the bad, and the Reality.
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  And this podcast is all about providing strength and hope and
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  support to individuals living with Parkinson's and their
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  caregivers. I share motivational stories and
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  tips and insights to help you navigate life with Parkinson's.
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  And if you're looking for that type of contact, then make sure
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  to subscribe. Join the movement, come with us.
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  We are changing the way that people think about Parkinson's
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  and people live with Parkinson's.
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  So today is a program that I'm passionate about. 5 things I
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  wish that I'd known before I started taking my Parkinson's
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  medication. So let's get right into it.
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  Here is a number one number one thing that someone I wish I
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  would have known was this. That timing is everything.
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  When I first started, I thought just take it when you remember
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  wrong. Parkinson's meds work best on a
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  schedule, and protein can interfere with that absorption.
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  OK, so as I say, always say this, meds on time every time.
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  I know I preach it, but it's so important.
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  It's so important. It's not just something you just
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  fluff by and get by. If you take it and it's your, I
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  take mine every three hours. So if it's every three hours, I
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  try to hit it on the nose. I don't try to say I'll get it
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  in a minute, I'll get it after this.
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  Take your meds on time every time.
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  And here's a specific tip that I wish I had ready and you can
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  talk to your doctor about this. Take your meds 30 to 60 minutes
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  before protein, or wait about two hours after eating it and
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  then take them. See, I learned the hard way
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  after eating a massive steak dinner and wondering why my meds
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  seem to vanish. Spoiler alert, the protein was
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  blocking them. So I want to be really clear
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  about this. I'm not a doctor.
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  I have some. I'm someone who's lived with
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  Parkinson's for 15 years. So I always check with my doctor
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  before I'd make a change or, or we talk about if I can or what I
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  should do and what strategies are working and what things that
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  we should implement. OK, but I don't plan my meals
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  around my meds. I just don't.
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  If I know I'm going to be eating a heavy protein meal, I take an
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  extra pill my my last dose or half an hour or an hour after,
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  whatever it might be. I work that with my doctor and
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  we work that through. I think it's one of the most
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  frustrating things to try to and frustrating hard and almost
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  impossible depending on your schedule to work food around
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  around your meds. It's much easier the other way
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  around. Doctor, doctor, fix it, change
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  it. I promise you it's life changer.
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  It will change your life. It really will.
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  All right, here is here's number 2.
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  Side effects can be sneaky. I wish I would have told.
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  I wish someone would have told me about these silly side
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  effects that, that, that were so sneaky.
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  You know, they don't always show up with the like a warning
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  label, you know, says sometimes it's subtle, a shift in mood,
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  changes in sleep or even behavior.
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  Now, for me, it started with these weird vivid dreams and
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  I'll admit, a little more impulse shopping than usual,
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  right? But here's the bottom line.
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  If something feels off, don't wait until your next
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  appointment. Call your doctor and talk about
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  it. You know, where I'm from in
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  Canada, we see normally our neurologist or movement disorder
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  specialist once every six months.
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  I've heard in the, you know, in the inner circle and other
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  places of summers every three months, some just nine months.
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  It's whatever it might be that if something's going on with
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  you, don't wait, you know, five months or six months, four
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  months. You phone your doctor, may
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  they'll see you, they'll make an appointment or send them an
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  e-mail. However it might be.
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  And if you're just getting diagnosed or if you're just
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  seeing these doctors, make sure on your appointment, say in
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  between appointments, if something's not right and
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  something feels off, what is the best way to get in touch with
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  you? Is it e-mail?
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  Is it calling the office? Please let me know and confirm
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  that with them, OK? And my is no.
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  And and don't think you're you're gonna be a burden on your
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  doctor, OK? You're not.
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  As a matter of fact, my doctor, my movement sort of specialist.
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  God bless him. He is always telling me why
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  haven't I talked to you for six months?
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  Like is everything? So I assume everything's OK.
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  In other words, he's saying if something's not right, if
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  something's not going away, to make sure they call.
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  Be happy. Your own advocate.
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  I'm telling you, you cannot sit back and wait with Parkinson's
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  'cause you know what? Did anybody ever tell you it's a
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  progressive disease, So sit back and wait.
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  For what? For it to progress.
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  Do it, fix it, change it now. OK.
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  And if that's you and that's out there, you know, tell me in the
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  comments have do you, do you talk to your doctor in between
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  appointments? Do you phone him?
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  What's how do you communicate with him?
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  Or maybe you've never done it. Let me know in the let's start a
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  conversation in the comments. I read and reply to every single
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  one. So please let me know is this
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  new or do you do this as well? OK, now here's the third thing.
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  OK, the third thing is this, the doses change over time, right?
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  When I first got diagnosed. Hey, let's start with this pill.
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  Let's start with that pill. We know. 11 pill every four
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  hours. Well, listen, your dose will
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  change, and that's not failure. OK, Early on, I thought more
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  pills meant I was losing ground, right?
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  Oh, no, I can't take more. That means I'm falling, I'm
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  slipping. It's going faster.
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  The reality, your doctors fine tuning your treatment to keep
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  you moving and feeling as good as possible.
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  Remember that they're fine tuning it to make it you feel as
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  good as possible, OK? It doesn't mean you're losing.
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  Doesn't mean it's defeat. Oh, my God.
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  I had to add another pill. I had to increase my dose.
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  Oh, boy, I don't want to deal with that.
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  Hell yeah, you do. It's better than deal with all
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  these off times, right? So get in there and get going
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  with that. Right.
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  And here's the thing that you can remember.
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  Parkinson's is progressive. That means your Med schedule.
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  That means it's going to continually get, you know,
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  worse, worse, worse, you know, and that means that as that
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  progresses, your meds were going to progress as well.
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  It's going to be a continual. Don't ever think it's a one stop
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  stop shop for all your meds. All right, we're going to move
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  on. Oh, before I move on to #4 don't
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  forget about this pricism. Stay tuned.
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  Do it because it's at the end here that you're really going to
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  like it. I know you are.
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  All right #4 communication is key.
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  OK. I schedule a check in every
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  three to six months, even if I feel steady.
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  OK, it's not about senior doctor only when things are bad.
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  It's about keeping them in the loop so they can just adjust
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  before the problems start. Bring your notes, track your
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  symptoms and speak up. Now, I know I kind of stepped on
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  this one already. OK, I know I already stepped on
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  it, but now what I'm going to tell you is I've got into a
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  rhythm. So now I call my doctor every
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  three months. So I six months, halfway in
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  between, I just do a quick check in.
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  Hey, here's where I'm at. Here's some things that are
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  going on, some things I'm thinking about.
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  Even if it's OK, even if things have been really well, I check
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  in. Hey, doctor, you know, hey, doc,
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  I don't want to say, but hey, doctor, blah, blah, blah, blah.
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  You know, hey, things are going really well with me.
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  You know, here's what I've been thinking about.
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  You know, if it's no big deal, I'll see you in a couple months.
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  And if it is, you know, reach out to me.
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  So that's an intentional check in.
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  And I had to do that because I'm probably like you, I'm not the
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  first one that's going to be trying to, you know, bug the
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  doctor. But anyway, so that's for me to
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  you, and it's a good one. So here is number 5.
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  This is the fifth thing I wish someone would have told me
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  before I started taking the medication.
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  And that's this, that starting meds isn't just physical, it's
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  also mental. You know, for me, accepting that
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  I needed medication everyday felt like a defeat at first.
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  Now I see it as a tool that gives me more control of my life
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  and not less. You know, I wasn't, I, I barely
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  took any medication before Parkinson's.
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  So I'm not, I was not used to taking, I wasn't used to taking
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  one pill a month, let alone, you know, 30-40 a day.
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  OK, so that takes a mental toll, but accept it, right?
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  Just accept that I need it. It's not defeat.
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  It's just a tool to make my life better.
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  OK. And in just a moment, I'll give
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  you that Brycism that sums up everything that I've that I've
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  learned about meds in one line. All right, so let's recap this
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  quickly. 5 things #1 timing is everything.
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  Number two, side effects could be sneaky #3 doses change, and
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  that's OK. Four, communications key #5 the
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  mental adjustment matters. All right, here's your Brycism
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  for the day. With Parkinson's meds, you're
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  not chasing perfection. You're chasing balance, and some
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  days balance means accepting the wobble.
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  There you go. Now it's your turn.
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  What's one thing you wish you'd known before you started your
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  Parkinson's medication? Drop in the comments.
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  Your advice could help someone just starting out.
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  And remember, you don't have to do Parkinson's alone.
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  Join the movement, come with us, be a part of this community, a
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  community that gets it, a community that's there for each
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  other. And if you want to go deeper and
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  you want to really to get into these, these subjects and
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  deeper, not just with me, like with me, but not just with me,
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  but also with other people that are just like you, caregivers
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  and people with Parkinson's, join the inner circle.
• 10:06
  The links in the description below.
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  And if you, and it's awesome and I invite you there, no pressure,
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  but I invite you there anyway. Until then, you know, I want you
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  to go out and I want you to do life and I want you to do life
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  today. We'll see you next time.
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  Parkinson's may be part of your life, but it doesn't get to
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  define it. Thanks for listening to Living
• 10:30
  with Parkinson's, the Good, the Bad, and the Reality.
• 10:34
  If this episode moved you, that helped you, or reminded you
• 10:37
  you're not alone, share it with someone who needs to hear it.
• 10:41
  Want to go deeper? The Inner Circle is waiting.
• 10:44
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 10:47
  Bryce. You'll find the link in the show
• 10:49
  notes. Until next time, keep showing up
• 10:53
  and keep doing life today. Parkinson's may be part of your
• 11:02
  life, but it doesn't get to define it.
• 11:05
  Thanks for listening to Living with Parkinson's, the good, the
• 11:08
  bad, and the reality. If this episode moved you,
• 11:12
  helped you, or reminded you you're not alone.
• 11:15
  Share it with someone who needs to hear it.
• 11:18
  Want to go deeper? The Inner Circle is waiting.
• 11:20
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 11:24
  Bryce. You'll find the link in the show
• 11:26
  notes. Until next time, keep showing up
• 11:30
  and keep doing life today.