Latest / Living with Parkinson’s | Bryce Perry / How to Build the BEST Parkinson’s Healthcare Team

Transcript

How to Build the BEST Parkinson’s Healthcare Team · 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,
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The good, the bad, and the reality.
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A podcast about what happens when life throws you something
0:18
incurable and you fight back anyway.
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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. You know what's terrifying?
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Realizing that Parkinson's isn't just about you.
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It's about the people you trust to keep you moving, to keep you
0:39
thinking, keep you living. And here's the problem.
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No one tells you how to build a team.
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Some doctors don't. Just they.
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Some doctors don't get it right, and some therapists aren't
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trained for it. And if you don't take control,
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you end up with the wrong people giving you the wrong advice.
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And that's why today we're going to talk about how to build the
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right healthcare team. Because trust me, this can make
1:00
or break your Parkinson's journey and stay till the end.
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Because I almost skipped a specialist that turned out to be
1:05
an absolute game changer. And I'll tell you who it was and
1:08
why I regret waiting. Hey everyone, welcome back to
1:21
living with Parkinson's, the good, the bad, and the reality.
1:23
My name is Bryce and today we're going to talk about something
1:26
that will shape every single part of your Parkinson's
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journey, your healthcare team. Now I want to take a quick
1:31
second to say hello to all my returning.
1:35
I call you like DLT Nation, like doing life today.
1:38
People that are doing life today that, that want to learn more,
1:41
grow more and want to live. So if you're a new subscriber,
1:45
welcome to the DLT nation. Welcome to doing life today.
1:48
And if you're just stopping in, you know what, check it out, see
1:51
what's see what it's like. And why don't you join us?
1:54
Because it takes takes a village, man.
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It takes a lot of people. And we're all on the same
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trajectory. We're all on the same not
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trajectory, but excuse me, we're all on the same journey.
2:03
And you know what? This is a community that that
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we're just building literally. And I'll just tell you really,
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really quick, I, I had this YouTube channel a while ago, did
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some motivational stuff, you know, kind of things like that.
2:14
But I didn't, I wasn't sharing my Parkinson's journey.
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And over Christmas, this, this past Christmas, few years or a
2:19
few months back, it just, you know, I thought, you know, I
2:22
just got to start opening up. I'm going to start sharing.
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I got to, I'm going to do what I, you know, I got to share.
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I just want to help people. I want to, I want to, I want to,
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I want to create a movement. I want to create a movement of
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people that are pissed off at Parkinson's and, and aren't
2:33
going to take it. That's people with Parkinson's,
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loved ones, caregivers and whatever.
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However, what I don't care anybody who hates this thing, I
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want to. I want to just help us all feel
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better, including myself. So literally just started kind
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of just sharing a month or so ago and man, so thank you.
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Like we've just, it's just exploded.
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I think we've had like 1000 new subscribers here with the last
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little bit. So thank you for that.
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I really appreciate your your trust in me.
2:58
I really appreciate you checking this out and I'm glad I'm hoping
3:01
that I'm adding value to your life and giving you maybe some
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tips and tricks of some things that I've learned along the way.
3:06
I've been diagnosed with Parkinson's over 15 years.
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So, you know, not that I know everything, but you know, I've
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learned a few things. So, but this what we're talking
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about today, Parkinson's like this, healthcare, this team is
3:19
so utterly important and I just can't wait to get into it.
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So let's just do that right now. So Parkinson's isn't just a
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movement disorder. You know that, right?
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It affects how you move, how you think, how you speak, even how
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you feel. And that's why you need a team.
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It's just not one doctor, but a group of professionals who work
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together to help you function your best.
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But there's one thing that you need to remember, and I want you
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to remember this. You're the leader of this team,
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you're the quarterback, the experts are there to guide you.
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But at the end of the day, you make the decisions.
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So you cannot just throw it out there and let everybody else
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take care of you. You gotta be the you gotta be
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the driving force. So today I want to kind of break
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it down. I want to break down the core
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specialist who should be on your team, you know, and when and
4:02
what they actually do. And then maybe I don't know how
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to find the right ones, but remember to stay till the end
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because there was this one specialist.
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And I'm telling you, I'll tell you about it.
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It's a crazy story, but I almost skipped it.
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I almost didn't go, I didn't want to go.
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And I'm so glad I did. I, I meant I would just
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absolutely, I regret that it took so long to do it.
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And it's so important to you. And I hope that you'll stay with
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me to the end because it's, it's really, really, really to me.
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It was been a game changer for me.
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All right, so let's talk about the core Parkinson's healthcare
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team. OK, so we'll start with the must
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haves, the professionals, you know, who should, who, who, who,
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who absolutely should be a part of your team.
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So the very first specialist there is your neurologist,
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right? Or your movement disorder
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specialist, right? Think of them as your head
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coach. This is your main doctor.
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Your neurologist or even better, movement sort of specialist
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should be someone who understands Parkinson's inside
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and out. Now there's, there's, there's
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general, excuse me, a general neurologist is fine, but it MD's
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has extra training specifically in movement disorders.
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And if you can see one do it or a neurologist who specializes in
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Parkinson's or anything like that.
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I mean, again, neurology, if you know my story, you can go look,
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go back over the episodes. I talked about this a lot, but
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there's an, you know what this is.
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I'm not alone in this. Many, many people have gone
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through the same journey as I have, but it took me two and
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then two years or so to be diagnosed.
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And I went through two or three. I say two or three because I
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completely have tried to erase it from my mind.
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Neurologists who, you know, you know, bless them, they were,
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they were doing their best, I guess.
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But they literally told me that at 40 years old, I was too young
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to have Parkinson's and that my grandmother had just passed away
5:43
with Parkinson's and that I'd see Michael J Fox on TV or, and
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I knew him. I didn't know him, but I knew of
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him. And so therefore it was all in
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my head that they said Michael J Fox is anomaly.
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And you know, it's just in your head and you know, it'll go away
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once, you know, you start kind of rethinking.
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And I'm going, wow, that's incredible light.
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So not only is my, my pinky shaking, actually my whole hand
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shaking by the 2nd neurologist appointment, my, my hand was my
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right arm, my right hand was shaking, twitching, and my right
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foot, my toes would were almost curled right up.
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And I'm thinking to myself, look great.
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So now not only am I shaking on one side of my body, not only my
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holes curled up, they not only are feeling tired and kind of
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weird, but now I'm crazy on top of that.
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So that's why I suggest and, and, and it's most people do.
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If you can find and get into a movement disorder specialist or
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a neurologist that specializes in Parkinson's first, you'll
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save yourself a lot of time. Trust me, you absolutely will.
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And and here's the thing, here's what do you call this.
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Like you know, I said, you're the quarterback of the team, you
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know a quarterback of this whole team, like here's a quarterback
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move, right When you are calling or when you're getting referred
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to. I don't know how it works in
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your country or where you are, but for us here in Canada, we
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have to be referred to a neurologist.
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So I had to, by the third time around, my doctor really well
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did it on himself. But ask them how many
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Parkinson's patients they see, right?
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That's that's a quarterback move right there.
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And that goes down the list as we get into all the specialists.
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When you're talking to them, it should almost be, you know, like
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when you go to a first time, go to the doctor, it's like they're
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interviewing you to see how much, how much work you're going
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to be before they receive you, before they'll say, OK, you're
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going to be my patient. You need to do the same thing.
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You need to interview them. And I mean that you really do.
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And one of the big questions of what I was surprised at this,
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one of the big questions, is ask them how many Parkinson's
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patients they see on a regular basis.
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And we'll touch back on that as we get into the more
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professionals and more of the specialists as we go through
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this. And maybe you'll kind of
7:47
understand what I'm saying. So anyway, that's your
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quarterback. So you're the quarterback story.
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That was your, what did I say, your coach?
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I think it was your coach, all right #2A physiotherapist, your
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mobility coach. Parkinson's makes movement
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harder. You know that a physiotherapist,
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though, can help you keep your keep your mobile and prevent
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falls and slow progression, right?
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If they know about, and maybe you don't know about this, but
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write this down if you don't know, if they know about LSVT,
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big or power, which is PWR exclamation point.
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PWR exclamation point moves, power moves even better because
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those are Parkinson's specific exercise programs.
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And when I say that, I'm not saying that, you know, going on
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on YouTube or going somewhere and watching a video of an
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exercise program or modifying a program you're doing.
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Now, I'm not saying that's bad. I mean, do it.
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Any type of movement is, is really good.
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But those two programs in specifics in particular, I
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should say, are Parkinson's specifics.
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So LSVT big and power PRWR explanation point moves, power
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moves. And, and the reason I say that
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is this is that there's tailored movements and tailored exercises
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that that are proven to a help you, help you with balance, help
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you with different things that Parkinson's actually, you know
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that you're going to suffer from.
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And, and it's you again, it's not just about exercise.
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It's not just about, you know, being out there and doing
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something, but these are actually specific movements,
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specific exercises for for specifically Parkinson's.
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So that's a big one. So make sure if you're looking
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for a physiotherapist to ask them if they have those, those
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programs. And if they don't, I'm not
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saying it's a deal breaker, but maybe they have their own
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program, maybe they have a Parkinson's specific program,
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but that's something to ask them when you go to, you know, you're
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checking out a physiotherapist. Don't just go, you know, for the
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cheapest one out there, you know, ask those questions.
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How many people with Parkinson's?
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And that back to my question I was talking about earlier is ask
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them how many people with Parkinson's they see on a
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monthly basis. And if it's one or two and and
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then or, you know, depending if they've been in business a long
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time, But if it's one or two, maybe go check on another one
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and see, get somebody who's used to it, who knows what to expect.
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Because people and you know, there's people don't know a lot
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about Parkinson's. They think they do.
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But what most people know is that a guy named Michael J Fox
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has it. Maybe Muhammad, Muhammad Ali has
10:05
it and you know, I think maybe I had an aunt or an uncle or a
10:10
grandmother or a grandfather that had it, but I'm not sure.
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But I just know that they're hand twitched sometimes.
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That's the to the extent. And so you really want to have
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somebody that's working with people with Parkinson's already
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has a Parkinson's program already and then then also knows
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that this disease is progressive and they will tailor and mod the
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program for you. So my advice is as you go into
10:30
the physiotherapy, whatever it is on it.
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And I think what I did when I started, and I've done it a few
10:35
times because I repeat a cycle, I cycle my, my, my therapies, if
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that makes sense. So the first time I went in, I
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think I went in for, I think it was like 4 weeks.
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Like I went once a week for four weeks.
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And then they gave me some things to do at home and which
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I, which I did. And then I just continue to do
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those things now. And I did that for maybe about a
10:53
year or two. You know, I was perfect.
10:55
I never missed a day. Yeah, right.
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But but I did it, you know, as best as I could.
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And then around about two year two or three, I went back and I
11:05
went back in and I for a follow up and we kind of checked, she
11:08
checked, you know, my balance and where I was at and all this
11:10
kind of thing. And then when she, you know,
11:12
kind of prescribed, if that's the right way to say another
11:14
kind of stretching exercise type of program, which again, I did
11:17
for a few years and then, you know, I went back.
11:19
So it's reciprocal. And so just because you've done
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and if you've been on this journey for a while now, again,
11:24
15 years now, almost 15 years to September.
11:27
And if you've been on this journey for quite a while and
11:30
you're saying, oh, I already did physio, Well, OK, well, when did
11:33
you do it? Because listen, you need to keep
11:35
it up. It helps your balance, it'll
11:37
help you stretch, it'll help you keep you limber and, and there's
11:40
so many benefits to it. So how about a quarterback move
11:43
on? This one is find someone with
11:46
experience in neurological. I can never say that right
11:48
conditions and and OK and not just So what I'm saying is not
11:52
just a general physiotherapist and if you can't find one in
11:56
your area, what's really cool. Now we have this thing it's
11:59
called the Internet. I'm just kidding.
12:02
I'm absolutely kidding, but there is a lot of people and
12:06
places and or. Stay with us.
12:12
We'll be right back. Physical therapists that offer
12:57
it online because you can definitely do it online.
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As a matter of fact, coming through COVID, I did mine
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online. I did like my follow up online
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and I went through it. So you can definitely do it
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online. So don't not, do not make that
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an excuse. All right, so and then I'm going
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to tell you when you should bring these in when you should
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bring these these specialists in in in a bit.
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So just hold on and I'll tell you when when I did, I'll tell
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you when I when I knew it was time that I had to start
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bringing these specialists and making them part of my
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healthcare team, right. So again, remember something,
13:28
something just popped there and it scared the heck out of me.
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I don't know if you saw my face. I was like shake something like
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boom, I don't know what happened.
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But anyway, you that's beauty of being live to tape you, you are
13:39
the quarterback of your team. So really when you get
13:41
diagnosed, I mean, how many people do you have on your team
13:43
so far? You probably have your, your GP
13:47
who maybe referred you to the neurologist or the movement
13:49
disorder specialist. And now they just diagnosed you.
13:51
So now I guess they're part of your team.
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You're wondering, but you've only had maybe one appointment
13:55
with them and they diagnosed you and you're, you're going back to
13:58
your GP who probably doesn't know a lot about Parkinson's.
14:00
And so now you're kind of going like, this is not a good start
14:02
to my team because here it's just me now, me and maybe
14:06
hopefully a caregiver or someone that loves me.
14:08
Now it's just us and we're and we're going to quarterback this
14:11
team when we know nothing about it.
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Well, good for you. That's why you're watching
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videos like this, so you can get on it.
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But who would ever thought I would never ever thought, you
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know, if I went back 16 years ago and 17 years ago when I was,
14:23
you know, doing my thing, I never thought I'd need a
14:24
healthcare team. I mean, come on, that's
14:27
ridiculous, but you do you do, and it's really important.
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OK, here's your third. Here's another member of your
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team is the occupational therapist, right?
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That would be like your daily life experts that and that's
14:36
besides me that no kidding. I hope you like my I hope I'll
14:40
put you in with my setting here because I'm a really a very
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humble person. I just, I like to make jokes
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anyway. So occupational therapist, they
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can help you adapt to everyday life.
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They can help you with you getting dressed, cooking or
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staying independent for as long as possible.
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They also help with assisted living, assisted devices like
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things like that can make your daily life easier like utensils
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or special utensils for eating with Parkinson's and stuff like
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utensils for tremors or speech to text apps, things like that.
15:09
They are the ones that you want to kind of go to and say, you
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know, you know what, what's out there for me, what's out there
15:15
for me? Because be like, I've been
15:16
telling you last episode, the episode before I've told you
15:19
over and over again, you got to you got to go for stuff, you got
15:21
to be your advocate. You got to just say, I want
15:23
this, I saw this, I want this, I want to try it.
15:25
I saw this, I want to try that. I saw that I want to try it.
15:27
Like do like never stop, like always want it, right?
15:30
Because we just want the best. I want to live the best life.
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I want to do life every day. And, and you know what, if I
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need special, a special fork or spoon to eat with, if I need a,
15:39
a text speech to text app, then then who cares?
15:43
I mean, get it, try it and then maybe some work and maybe some
15:45
don't, but it doesn't work. It doesn't hurt to try, right?
15:50
Does that make sense? And hopefully that makes sense.
15:52
And if it did, you know what if that made sense, give me a big
15:55
like, just hit that like button. It'll help push this video out.
15:57
We can reach more people and that need to hear this video
16:00
some or need to see this video here, whatever it might be or
16:02
this podcast. OK, here's a quarterback move.
16:06
This is for your occupational therapist.
16:07
This is my quarterback move that you're going to do is write this
16:10
down. Ask them what small changes can
16:12
I make today that will keep me independent longer?
16:17
I know that sounds like a simple question, but it's really not
16:19
because they're really when you go there the first time and when
16:21
you get in there, they're like thinking that, OK, this is an
16:24
immediate thing that I need that I'm here, I need, they need to
16:26
help me with right now. So they're looking at at you now
16:29
and it's good. I want you to look at you now.
16:31
But when you're at these appointments, I want you to look
16:32
at you now and I want you to look at yourself a year down the
16:34
road and two years down the road and three years down the road,
16:37
right? And there are 1,000,000 little
16:40
changes and things we can do now that will help us in your two,
16:43
3-4 and five. So always ask that is there
16:46
something I I can do now that's going to help me down the road
16:49
and keep me independent longer? OK, That was a quarterback move.
16:54
And I don't mean to make this, you know, like, I guess women
16:57
play football too, right? I guess everybody plays
16:58
football. But I was saying I don't want to
17:00
make this like a male thing. So, but it doesn't matter.
17:01
It's just, I hope you understand it's just a analogy.
17:04
I guess that's not the right way to say it.
17:06
OK, Fourth person you're going to need and on your healthcare
17:09
team should be part of your team.
17:11
If it's not, it should be. And if and if you're just
17:14
getting started on this journey, write it down again.
17:16
I'll tell you when I brought them in, in my journey to start
17:19
using them and using them. But the next person you need on
17:22
your team is a speech language. They call me their speech
17:26
language pathologist, right? Or a speech therapist.
17:30
OK, you know what I call them? They call again, it's either
17:34
called the speech language pathologist, which is the SLP or
17:39
right or a speech therapist and Bryce's acronym for them,
17:43
Bryce's word for them, Bryce's title is the voice and
17:46
swallowing coach, the voice and swelling coach.
17:50
So even if your voice is fine now, Parkinson's makes it softer
17:55
over time, believe it or not, it does.
17:57
A speech therapist helps keep it strong.
17:59
OK. And they're also so going to,
18:01
they're also so good at addressing swallowing problems,
18:05
which can also can be a very serious problem later on, right?
18:08
So you know many people that's, you know many people you know,
18:13
pass away from choking, right or and so it's a big problem.
18:18
And this is what you can use them for.
18:20
OK, here's a quarterback move with them.
18:23
If you're noticing a voice, just sorry if you're noticing voice
18:26
changes now, all right, or any voice changes whatsoever, look
18:31
for someone trained. And here's what you want to look
18:33
for. It's an LSVT loud.
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OK, LSLSVT loud. And I'll put some links in the
18:39
description below. I'll put some of the the names
18:42
that I'm calling out and I'll put some links to the to the
18:44
website. So maybe you can find one in
18:46
your area. I'm telling you, it's a game
18:48
changer. OK.
18:49
And I'll, I'll leave that for there and, and we'll we'll dig
18:51
more into that a little bit later in some more broadcast
18:54
coming down. As a matter of fact, I am in my
18:56
I've had the fortune of the good fortune too with Parkinson
19:01
Canada. Michael J Fox Foundation is, I
19:03
host what's called the PDIQ and you and they're, they're a whole
19:06
day event made-up of panels. And I host the events in Canada
19:12
and I moderate them. And my first panel, it's all
19:14
about building this healthcare team.
19:15
And on the panel I have my, you know, I have the, the, the, the
19:18
movement sort of specialist. I have physiotherapist, I have a
19:21
speech therapist normally from the area that we're in.
19:24
And those are the types of questions I asked.
19:26
So I'm very well versed in this. But what, what's been great
19:28
about it is in every city that we've done them in, I've been
19:31
able to meet a different movement sort of specialist, a
19:33
different physiotherapist, a different speech therapist.
19:35
They're all wonderful people that, that I've been able to
19:38
meet. What's really cool about it is
19:40
they're from all different areas of the country, all over the
19:42
areas of the world. They're all different, but they
19:45
all say the same things and they, they reiterate the same
19:48
things that I'm reiterating to you today.
19:52
And stay tuned because what I'm probably doing and maybe maybe
19:55
do me a favor in the comments. This is, this is really help me
19:57
out is they've, you know, they've offered to come on and,
19:59
and, and do a podcast. So, you know, I was thinking of
20:02
maybe either doing a panel where I'd bring on the speech
20:04
therapist and the and the physiotherapist or facial
20:08
therapist and have a. Round table and I can ask them
20:10
questions and maybe we can do a live Q&A if that's something
20:13
that's interesting or I can just, you know, record it as a
20:15
podcast. So if that's something that you
20:17
think that you'd get value from do if you're in the comments,
20:19
just say cool, great, would love that or whatever would love to
20:22
see a panel or a podcast or a live of that.
20:25
I'd really appreciate that. Again, that's I'm not here just
20:29
to blow hot air and talk about what I want to talk about.
20:32
I literally want whatever I can do.
20:34
That's my kind of my mission in life.
20:35
Whatever I can do to help you in this journey, I will.
20:38
So if you think you'd benefit from that, let me know.
20:41
And if there's any other topics that you'd like me to touch on
20:43
or talk about, please in the comments, just let me know what
20:46
they are and I'll take it to heart.
20:47
I really will. As a matter of fact, I changed
20:49
this topic today. If you watched the last podcast,
20:53
I said, you know, next week we talk about something, something,
20:55
something and we're not. And that's the thing because I'm
20:57
not about, I'm not here to get likes and I'm not here to get
21:01
comments and I'm not here to get subscribers, right?
21:05
I'm here actually to help. I'm here to help help and to
21:10
form a community and we'll grow this community.
21:13
Trust me, we'll grow this community and we'll we'll do
21:15
other things other than this YouTube and we'll reach out and
21:17
we'll support each other because we need that we need that and
21:20
it's worldwide. We have people, you know, that
21:22
are joining from Malaysia and we just thought, you know, Malaysia
21:25
all across the United States, all across Canada, Ireland,
21:27
Ireland, Ireland, just amazing. So wherever you are in the
21:31
world, please join us. I mean, it's going to be it's
21:34
it's I don't want to say it again.
21:35
It's great it's exciting. I mean, we have this ridiculous
21:39
disease, but, but we're going to live the best life we can with
21:44
it. OK?
21:46
And you're going to live the best life we can with it.
21:47
So join us. It'd be amazing.
21:49
So OK, so we've talked about that.
21:51
So with physiotherapist, occupational therapist, speech
21:53
therapist. Now, what else do we need?
21:54
Who do we need to add to this, to this team of ours that again,
21:57
you're the quarterback, you and, or your loved one or your
22:00
caregiver, but but you really have to do this.
22:03
I would add this in and this is this is optional.
22:05
This is this is depending on your feeling, but I just think
22:08
it's going to have somebody in the in your, in, in your, your,
22:12
your team, because it's easier to have them there when you need
22:15
them then go looking for them when you need them, if that
22:18
makes sense. So that's a mental health
22:19
support, right? That's a mental health support.
22:22
A psychologist depending on social worker or a counsellor or
22:25
a coach, depending on what level you think you need.
22:29
And then they say coach. Yeah, coaching.
22:30
Why not? I believe in that.
22:33
I believe in someone being accountable to somebody.
22:34
I believe that that you should be, you know, work with people
22:37
and, and, and help people. So anyway, a psychologist,
22:40
social worker, counselor or coach, and this isn't talked
22:44
about enough really. Parkinson's can bring
22:46
depression, can bring anxiety, can bring apathy, and just the
22:50
sheer weight of of dealing with this chronic illness that has no
22:54
cure. It's heavy.
22:57
It's heavy, right? You know that it's really heavy.
22:59
Well, a mental health professional can help you
23:01
process that and it can help your family too.
23:03
It can help your loved ones, it help your caregiver.
23:05
Even if you're caregiver, you're struggling, trust me, don't if
23:10
you have to, you want to, you can do it.
23:12
I, I really do. And and that's why I said it's
23:14
easier to have one to no one or have one in your, in your, in
23:17
your, your team than to go looking for one when you need
23:20
it. Because when you need it,
23:21
you're, you're, you're that's, that's maybe when you're
23:23
struggling and it's not going to be fun looking for one.
23:25
So what I did, I'll just tell you this, this tip off the bat,
23:28
what I did is I went out and found somebody more of a coach.
23:32
I guess a coach is what would be that, you know, he, he had park,
23:38
he has Parkinson's, right? So it's kind of like an
23:40
accountability person. And when I'm struggling, I can
23:43
call him. Do I have to pay for it?
23:44
Sure. He's not my buddy, but he's
23:47
there to help me when I need it. But I, I haven't had to really
23:50
tap it. I do sometimes I years ago I did
23:53
and it was great for the time, but he's on my team so that if I
23:55
something happens to me or some new thing comes upon me and I
23:59
don't know what to do and I'm struggling and I'm down and I
24:01
need some help. He's there.
24:03
I can call him. Hey, can I, can I make an
24:04
appointment with you? I need to come and see you.
24:06
I need some help. So if you're saying, hey, that's
24:10
down the road, I'll need, I'll need that later.
24:12
Well, if you're feeling good now, go find one now just kind
24:15
of interview them, talk them over the phone.
24:16
Just say I'm going to make you part of my team and you're there
24:18
if I need you, right? And that that that would be what
24:21
I would say there. So here's a quarterback movie
24:24
ready for this. If you're feeling overwhelmed,
24:27
that's a sign you need support. It's not a sign of weakness,
24:31
right? If you start feeling, if you're
24:32
feeling overwhelmed, that's assigning support, not a sign of
24:35
weakness. And that's so true.
24:38
Now, how do we build this healthcare team?
24:42
So I list them all out. Now, how are we going to do
24:45
that? OK.
24:45
And when, how and when? OK, so we know who's on the
24:49
team. We got that down right?
24:50
You're good to go. So how are we going to find
24:51
these people? So here's the way I found them
24:54
and some other little side tips that I found along the way.
24:57
First thing you need to do is ask your neurologist, all right,
25:00
or your MD's right for referrals.
25:02
And they always usually have a list of trusted specialists.
25:06
They have their go to people, they'll give you maybe a list of
25:09
one or two or three depending on where you are.
25:11
And they'll hopefully even give you virtual online as well as in
25:14
person. So that's your number one go to
25:16
your neurologist right off the bat is your #1 go to.
25:19
Then you can check other Parkinson's organizations in
25:22
your country, your city, your town, right?
25:24
They often have directories of professionals that are trained
25:26
in this in Parkinson care. As a matter of fact, in Canada,
25:30
we have something that called that.
25:31
I'm very happy. I kind of helped develop it and
25:33
it's still in development, but it's live and out there.
25:35
It's called Carefinder. Carefinder.
25:38
It's at parkinson.ca. And look for.
25:40
Carefinder at parkinson.ca and you can literally put in your
25:44
city or town your postal code if you live in Canada and it will
25:47
pop up all the programs that we have listed anyway that that are
25:51
around you within like 5 kilometers or, or what is that 5
25:54
kilometers? What is that?
25:55
That's 3 miles to 2.3 miles around you or a lot or further
26:03
away, but also has virtual options as well.
26:05
So and maybe your country or your area has a similar
26:10
directory, I don't know but go check it out.
26:12
Parkinson UK, Parkinson Foundation, Michael J Fox.
26:16
And they usually have a list, right?
26:18
The other place that I found them and that I found them, that
26:21
I found these specialists were in a support group, right?
26:24
So other people with Parkinson's are the best resource for
26:26
finding good doctors, therapists and clinics, right?
26:30
Other people are the best resources.
26:32
So that's, I mean, I would rather someone, I would rather
26:34
someone say to me, Oh my gosh, this person helped me beyond
26:38
belief. I'll go to them, right?
26:40
You've been there, you done it, you've been in my shoes.
26:42
I'm going that way. So ask around, ask around,
26:45
right? If you're in Canada, if you want
26:46
to ask me, ask me. I I know some reading really
26:49
good people from most provinces in the city or in the in the in
26:53
the city, most provinces in the country.
26:57
And the other thing you want to do is you want to be picky.
26:59
OK, so I've heard this so many times.
27:02
They don't really listen to me. I'm telling them that this is
27:04
the problem, but they want to talk about this and they don't
27:06
listen to me. Now there is often times that
27:08
they will know the right way to go.
27:10
Obviously you need to listen, but you need to be picky.
27:13
If a if a provider doesn't listen to you or doesn't seem
27:16
knowledgeable or doesn't have these answers or doesn't even
27:19
have a referral to somebody else about Parkinson's, then you need
27:25
to find someone who does. That's the bottom line.
27:27
If they if they don't know or they're not knowledgeable, you
27:29
need to find somebody who does. Do not settle another.
27:35
How many times have I said this is what you need to write down?
27:36
This is the message today, but do not settle.
27:39
Go for the best. You're the best.
27:41
You deserve the best. You want the best, so there you
27:44
go. Make sure you're picky.
27:46
And I mean, I mean, I, I literally go in like I'm
27:49
interviewing them for 60 minutes or dateline.
27:51
I'm in there. Like, what about this?
27:52
Have you done this? Have you have you had somebody
27:55
my age before? Have you have you treated
27:57
somebody that has had this, this and this that has their toes
28:01
curled in the morning? But you know, or it feels
28:03
terrible in the morning and like I go through everything I'm
28:05
dealing with and I say, have you done it before?
28:08
Right? Have you done it before?
28:10
And they might, they may not have.
28:11
And that that doesn't mean it's, it's not bad.
28:14
It doesn't mean it's bad, you know, maybe that.
28:16
But if you need to interview and you have to feel comfortable.
28:20
And Part 2 to that is you also have to feel comfortable to be
28:23
able to share things because you need to be very honest with
28:25
them. If you're struggling, you're
28:26
struggling period. We're not going to be heroes
28:28
anymore. So you have to be able that you
28:31
can say, I can tell this person what I'm going through and, and
28:34
I feel that they're either going to have the answer or they're
28:37
going to go look for the answer. OK, so I said in the beginning
28:42
of this video that I was going to tell you about the specialist
28:45
that I almost skipped and, and Oh my gosh, I, I, I almost did.
28:49
So I'm going to tell you who it is right now.
28:52
So the one that I, that the one specialist that I almost didn't
28:55
see, OK, was the speech language pathologist, the speech
28:59
therapist. At first I thought my voice is
29:02
fine. Why would I need speech therapy?
29:03
But here's the thing, by the time you notice your voice is
29:06
getting weaker, it's already harder to fix.
29:09
I wish I had started therapy earlier.
29:11
It's it's not just about the volume, OK?
29:14
It's not just about being loud or quiet.
29:16
It's also about the consistency. It's about swallowing safety and
29:19
keeping communication strong. If there's one take away from
29:23
today that you don't, if there's one thing that you can take
29:26
away, don't wait until you need help to build your team.
29:29
You need to start now. I'll be honest.
29:32
When I talked to somebody, someone had mentioned, man, you
29:35
should go to speech therapy. And I'm like, why?
29:37
Why? What's wrong with my voice?
29:38
What's happening here? And again, this is my
29:40
wheelhouse. This is what I do for living.
29:41
I speak for a living in my work at park as a candidate and my
29:44
events, you know, I speak at, I, I was speaking at a support
29:47
group, you know, the other day and, and I'll throw this out
29:50
there. If you're in a support group or
29:51
you something and you want me to join, ask me, I'll do it.
29:54
I'll come to virtually to your event or to your event or your,
29:57
or your support group and, and I'll talk, I'll answer questions
30:00
as best I can. But, and so I was doing what
30:02
someone reached out to me and it was actually in, on the East
30:04
Coast in Canada. It was in, I think they were in
30:06
PEI. No, I don't know, Nova Scotia,
30:08
Dartmouth, NS and I was in a support group, the other there.
30:11
And I do this all day long. So what I didn't realize or
30:17
sorry, when someone said you should go, I was kind of
30:19
questioning why should I go? Like they must, I must be
30:21
really, you know, sinking down. And, and I and I mentioned in
30:24
previous videos that my wife said he kept saying to me that I
30:27
was quiet talking quietly. Why are you talking so quietly?
30:30
And I'm like, I, I didn't know I was.
30:32
And she asked me to speak up. So I'm like, OK, I'm going to
30:34
speak up. And I went louder.
30:35
I went, I said, OK, I'm going to speak up now.
30:37
And she's like, it's the same. But I'm like, what are you
30:39
talking about? So I in my head, I'm going like,
30:41
I want speak louder. And she was like, it's the same.
30:44
I'm like, oh, wow, this is so bizarre.
30:46
I actually thought I was speaking louder and I wasn't.
30:48
Anyway, I signed up for speech therapy and, and if you've taken
30:52
this, you know, Oh my gosh, right.
30:54
And if you haven't, this is I want to prepare you because I
30:56
want you to understand something that, you know, the first round
31:00
of speech therapy and I did it virtually is, is, you know, it
31:03
was like I had to pick 10 phrases that I would say every
31:06
day, just 10 phrases. And I'm like, Oh my God, what do
31:08
I say every night? OK, I say, I love you.
31:11
I say good morning, goodnight. What's the temperature outside?
31:17
Right. And then and then I'm like, what
31:20
are we having for? No, no, my other one was I don't
31:24
know what I want for dinner. I seem to say that every day.
31:27
I don't know. It doesn't matter.
31:28
I don't know what I want for dinner.
31:29
So I just come up with these 10 phrases, Right.
31:31
And so then every day I'd start the sweet therapy with repeating
31:34
I love you. Hello.
31:36
Goodbye. It was it was Hello.
31:38
Goodbye. I love you.
31:39
I don't know what we want for dinner.
31:40
What's the temperature outside? What do you want to do today?
31:43
It looks very pretty or very nice outside.
31:46
I really hope it's not cold out. I hope it doesn't snow today.
31:49
And so if you live in Canada, especially deep Canada where I
31:51
am, that's one thing. I hope it doesn't snow every
31:53
day. So if you don't have to say that
31:55
every day, then I'm jealous and envious of you.
31:59
But I'd say those every day. And then they'd make you do this
32:02
thing where you have to like go for as long as you can, as loud
32:07
as you can, for as long as you can, as loud as you can.
32:11
So I did that the first day and I, I did it for a grand total of
32:16
12. Like no, it was 8 seconds of
32:20
then I ran out of breath. OK.
32:23
And what I didn't realize is that she had the, the, my, my
32:26
doctor, my specialist therapist had timed me and also had
32:30
recorded me to see how many decibels I was doing it because
32:32
I remember it was supposed to be as loud as you can, as long as
32:35
you can. And I'll get back to that in a
32:37
second. So after that first thing I I
32:39
got off the the video, I shut my computer.
32:42
I walked in the room and my wife looked at me and she's like, are
32:44
you, are you OK? And I'm like, yeah.
32:46
She goes, well, you don't look very happy after your speech
32:48
therapist. I thought you'd be excited.
32:50
I said, I feel like I'm in kindergarten.
32:51
This feels like kindergarten, you know?
32:53
I love you. Good day.
32:54
Hello. Goodbye.
32:56
And, and, and she's like, Oh my gosh.
32:59
So thankfully, you know, she talked me into going back
33:01
another day, another day and another day.
33:02
And I just, it's repetitive and it's, it's memory.
33:04
But what I learned was that your, your speech, right?
33:08
Your speech. It's a, it's a muscle.
33:10
The things that you're speaking with are muscles and just the
33:13
way you exercise your arms, right?
33:14
And you get into rhythmatic movements with your arms.
33:17
You're building back that muscle.
33:18
You're building back that speech as well for that thing that I
33:21
talk about where the word disappears from my head.
33:24
You're going over and over and over words.
33:27
We're saying the same words over and over again on purpose.
33:29
You're you're building this, this up.
33:31
So I say this to say that I say all of that to say this.
33:34
Why am I such a big believer in speech therapy and then saying
33:39
that you should do it? Is that at after the thing was
33:43
done, it was a 30 days every day, every day of doing this,
33:46
plus doing things on my own of just repetitive speaking and
33:48
stuff. When I went there for as long as
33:52
I could, as long as I could, I went for 49 seconds or some
33:57
crazy number and my decibels had increased by 30 or 30 to 40
34:03
decibels. After 30 days, my wife, all of a
34:07
sudden she started saying, man, you're talking again at parties,
34:09
you're talking again when we're out, we're talking to groups
34:11
again. You're talking loud.
34:13
I can hear you, I can hear you. I'm like, my God, I, I'm the
34:16
biggest advocate of, of, of speech therapy and, and, and
34:19
when do you take it? When do you take it?
34:22
And what I said, if there's one take away from today, but I've
34:25
given you 5 of them, but but another one is don't wait until
34:29
you need help to, to start building your team.
34:31
Don't wait till you need help to build your team.
34:33
You start now. If I would have known, but
34:38
that's that's what speech therapy would done done for me.
34:40
I would have done it from the beginning.
34:41
I would have started right away and then I would have done like
34:43
I said, every two to three years I do it again.
34:46
Every two to three years, I do it again.
34:47
Or when my wife says to me, you're talking lightly again, I
34:51
can pick up and just do it myself.
34:54
But if I don't have the accountability to do that, I can
34:57
call them up and I'll start another, another session.
34:59
And we do it for one week. And then my brain, it kicks back
35:02
in. I do it again.
35:02
I keep doing it. I keep doing it.
35:03
I keep doing it and my voice stays consistent.
35:06
My swallowing is better. My, my memory, my word recall is
35:09
better. And I'm so happy.
35:11
So that's my advice. That was my big game changer.
35:14
Even if you don't think you need it, I'm telling you, now is the
35:17
time to do it. OK, so that's building your
35:21
healthcare team. That's how this works.
35:23
When do you start? Start now, even if you don't
35:25
need it, if you're getting even, get the people put on your team.
35:28
Just put them on your team and then think about it later.
35:32
But you need to get this team going.
35:35
And the last again, I'll say it again, you're the quarterback.
35:38
You're the quarterback, unless you have a really strong loved
35:41
1A partner caregiver because I sometimes I think they're the
35:45
quarterback and I'm just sort of running along behind them.
35:48
But but that's good because they love me and I love them and
35:51
that's what helps. So I hope you got value out of
35:53
today. I hope you're getting value out
35:55
of this community. I am so humbled, literally
36:00
humbled. I, I, I'm so humbled.
36:02
That's all I can say. All right, we'll see you till
36:04
the next one. Parkinson's may be part of your
36:13
life, but it doesn't get to define it.
36:16
Thanks for listening to Living with Parkinson's, the good, the
36:19
bad, and the reality. If this episode moved you,
36:23
helped you, or reminded you you're not alone.
36:26
Share it with someone who needs to hear it.
36:28
Want to go deeper? The Inner Circle is waiting.
36:31
Monthly Zoom calls, 24/7 community, and a Direct Line to
36:35
Bryce. You'll find the link in the show
36:37
notes. Until next time, keep showing up
36:41
to keep doing life today.