Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s Symptoms, Diagnosis & Dystonia: Live Q&A with Bryce (Ask Me Anything)

Transcript

Parkinson’s Symptoms, Diagnosis & Dystonia: Live Q&A with Bryce (Ask Me Anything) · Living with Parkinson’s | Bryce Perry

0:01
They told him he had five good years left.
0:04
That was 15 years ago. He's still standing, still
0:08
speaking, still living. This is living with Parkinson's,
0:12
The good, the bad, and the reality.
0:15
A podcast about what happens when life throws you something
0:18
incurable and you fight back anyway.
0:21
Hosted by Bryce Perry, diagnosed at 4015.
0:25
Years into the battle, This is the truth behind the tremor.
0:29
Let's begin. Hey, welcome to my live.
0:34
Welcome to live Q&A. I'm so glad you're here.
0:37
If you're here, I'm glad you're here.
0:39
That's amazing. And I've got kind of some
0:41
feedback here, so I'm going to turn some of my my volume stuff
0:44
down. So welcome.
0:46
It is. What is it?
0:47
It's Tuesday night. It's a Tuesday or a Wednesday.
0:50
It's a Wednesday, Tuesday. It doesn't matter what it is,
0:51
but I'm glad you're here. Welcome to the broadcast.
0:55
My name is Bryce and this is doing life today and it was
0:59
getting so many questions in the in, you know, in the comments
1:03
and whatnot is because we've kind of grown really quickly
1:06
here. So I thought I'd just take a
1:07
night and just come on and just be here live.
1:10
So I'm actually sitting here right now.
1:11
We're live and you can see in the chat wherever you're
1:14
watching. If you I think we're live on
1:16
Facebook and YouTube, but there's a question, Sir, you can
1:19
drop some questions right in the comments.
1:22
So if you have any questions for me, I'm just going to sit here
1:24
and I'm going to answer them. I'm going to answer the best I
1:25
can. That's, you know, one of the
1:27
things I hope you can appreciate about me is I'm pretty real
1:29
honest. And you know, don't sugar coat
1:33
it, if that makes sense. I mean, I've been living with
1:35
Parkinson's now for 15 years. So anyway, give me a shout, let
1:39
me know I'm by myself. So I'm, if I see me looking over
1:41
here, that's because I'm looking over where the comments are.
1:44
So feel free in the comments to just let me know that you're
1:47
here. Say hey, say hi, we'll shout it
1:49
out. And I've got some pre questions
1:51
that have come in and I will go through those questions and
1:54
answer them, but I'd really love to engage with you.
1:56
That's something that I love to do.
1:59
And if you know that if you look in through the comments or
2:02
whatever, I'm always kind of, I'm in there.
2:04
I love it. So this is something that was a
2:06
dream of mine to build a community of people that you
2:09
know there. There's a really crazy, not a
2:12
crazy comment, I shouldn't say a crazy comment, but there was a
2:14
comment in the comments. There was a comment in the
2:17
comments today that I thought was quite interesting and that
2:20
was it really kind of struck me and, and someone was we were
2:25
talking about the video that was that came out today and I was
2:29
talking to like, you know, I don't want to like give it away
2:31
if you haven't seen it yet. So, but anyway, they said that
2:35
there's too many people on the Internet that are, you know,
2:38
when you start Googling stuff and you know, if you've been
2:40
diagnosed with PD or you're know, somebody was diagnosed
2:42
with PD or a loved one with PD, you know, it's tough, right?
2:46
You know that that's really hard.
2:47
And there's seems to be like not a lot of answers out there.
2:49
So when we, I don't know, when we, we start Googling and we
2:53
start looking for answers and how do you know what to trust?
2:55
How do you know what's real? How do you know what's not real?
2:57
And when I, I don't know what you, when I started looking
2:59
through and you know what, give me a, give me a, you can hit
3:02
that little heart button or something.
3:03
They're giving me a heart to know I'm on the right page or on
3:05
the right track here. But I felt like the worst of the
3:09
worst every story I googled there.
3:11
So you know how, what's the life expectancy of Parkinson's?
3:13
And you know what? I there was one time and I
3:15
pulled it up and it said the life expectancy apprentices is
3:18
10 years. OK, well.
3:20
I'm 40 years old when I got diagnosed, right?
3:23
I was 40 years old when I got diagnosed.
3:25
And so I just read something that said my, you know, life
3:28
expectancy is 10 years. Can you imagine like just for,
3:31
imagine for one minute what it's like when you're 40 years old
3:35
and you're trying to figure out what's going on with you and you
3:39
know, stuff like that. And all of a sudden you're kind
3:41
of going like, oh, wait a minute, now I've got 10 years.
3:46
That's what I've got 10 years. So that means when I'm 50 now,
3:52
that's freaky, right? That's like scary.
3:54
So that's ridiculous. So I've, I've blown that by
3:56
another five years past that. So I'm at like 15 now.
3:59
So 15 years will be 15 years in September since I was diagnosed
4:04
and you started my, my, my Med journey and whatnot.
4:07
So yeah. So Needless to say.
4:11
You got to be really careful the information you get.
4:13
So anyway, I'm live. So we are live.
4:15
We're live here now. If you're on on board and
4:18
welcome, welcome, welcome, welcome.
4:19
But do me a favor, just so I know I'm not sitting here all by
4:22
myself, just, you know, if you don't have any questions for me,
4:24
that's fine. Just but maybe just put
4:26
something in the in the little chat, live chat.
4:28
So I don't know if the comment button comment section is open
4:31
or not, but there's a live chat. You can just join it and just
4:34
throw in there. Just say hey, hi here, I'm here,
4:36
I'm in, I'm in Wamabaloo, Wababaloo Canada.
4:40
Like I'm like, hey, cool. I'm I know you're not.
4:42
I know that someone's watching and we're we're good to go.
4:45
So I'm going to start with a question that I got sent to me
4:48
and I'm going to look over it. So again, I'm not ignoring.
4:50
I'm just looking over to my right here because I need to
4:53
make sure that. I know what I'm.
4:55
Doing here. So let's go to a question that I
4:58
got in and I'm going to open up the questions here.
5:01
And the first question is there we go.
5:04
So it said, hey, Bryce, how did you first know something was off
5:11
before you got diagnosed? How did you first know that
5:15
there was something off before you got diagnosed?
5:16
I wonder if I can just copy that and put it in the chat and then
5:20
everybody can see it. Let me just look here, copy and
5:23
I will throw it up there. Just so you know, we know what?
5:26
We're all on the same page. So this was the question.
5:32
Yeah, I know what to do. I'm going to go here.
5:35
Bear with me. This is my first time I'm doing
5:37
this, so I am far from a professional.
5:41
There we go. I'm far from a professional.
5:43
So I'm going to put this here in the chat.
5:45
This is a question that came in from a viewer or a listener, and
5:49
I'm going to go there and there and I'm going to hit the button
5:53
now. It should pop up.
5:54
There we go. All right, thank you.
5:56
I'm not alone. Thank you.
5:58
Mki appreciate that. It's like, Oh my gosh.
6:01
Anyway, so this is a question that came.
6:03
In and I'm going to hit this other button here because I've
6:06
got the power I've got the power all right cool.
6:11
Welcome MJ thank you for joining me.
6:12
I really do appreciate that that is fantastic all right so here's
6:16
the question. How do you know that there was
6:18
something off before getting diagnosed OK, so early signs of
6:21
PD right and again we've all heard and and and you know and
6:25
again I could be preaching at the choir, but I'm really big on
6:28
education and advocacy right and so I was actually today it's
6:32
Parkinson's awareness month. So today I did a radio interview
6:35
on Oh my God, there goes my meds.
6:39
Sorry about that. Today I did a radio interview on
6:43
it was called CBC Manitoba, which is a radio station.
6:47
And they asked me almost the same similar question to that.
6:50
And, and it was, this is that number one is it's not just an
6:54
old person's disease, right. So all of a sudden I was sitting
6:57
here one day and, and, and this is what was kind of kind of, I
6:59
don't know if it's kind of freaky or kind of neat or
7:01
different. I'm not sure you tell me, but my
7:04
grandmother had Parkinson's. She got diagnosed probably when
7:07
she's like 67 or 68, I guess. And she had Parkinson's and she
7:10
passed away the day before my birthday in September, 15 years
7:16
ago in September. Of this year on my birthday or
7:19
right around my birthday, I started getting a a, a twitch, a
7:23
twitch in my right hand, right. And so, you know, most of us
7:26
know that Parkinson's isn't starting probably half one side
7:29
of your body right, right or left.
7:31
And you know, we know that the, it's a resting tremor, right?
7:34
So resting tremor when we're at rest, where it's was when it's
7:36
going to tremor, not when we're, you know, essential tremors when
7:39
we're doing things and moving. So it just started twitching.
7:41
And so I honestly, at the time I thought, I didn't really think.
7:44
I, let me, to be honest, Parkinson's disease was not the
7:48
person that popped in my mind. I get a twitch and Parkinson's,
7:52
it wasn't like, Oh my God, I must have Parkinson's.
7:54
I, I got a twitch. And I'm thinking, oh, wow, I'm,
7:57
maybe I'm just like really stressed out.
7:58
Maybe I'm, you know, maybe there's some anxiety running
8:00
around in my head because me and my grandmother passed, you know,
8:02
it was a hard time, but my grandmother and I were very
8:05
close. And so, yeah, I thought it would
8:08
just go away. I'm just tired.
8:09
I'm stressed, you know, whatever it might be.
8:12
So after the next day and it was still there and the next day was
8:15
still there and it wasn't going away.
8:17
And I and I noticed and. And I'm going to let, I'm going
8:20
to tell you something that I'm actually, I don't know if I'm
8:22
that proud of actually, to be honest with you, that, you know,
8:25
my grandmother had it and I knew nothing about it.
8:29
Isn't that awful? I, I, you know, I didn't know.
8:32
I knew. She shook.
8:33
I knew. She tremored.
8:34
I knew she tremored. I knew, you know, in the later
8:37
seasons life, she was having trouble walking.
8:39
I knew that she drooled. I knew that.
8:42
But that's all I knew, right? So I didn't even know.
8:44
I didn't know what Parkinson was.
8:46
I really didn't. And so this this twitch kept
8:49
coming around. So I'm then I'm thinking, then
8:51
it started done. I'm like, Oh my goodness.
8:53
I wonder if this is what my grandmother had.
8:55
So what's the first thing you do?
8:56
I went to Google. I started Googling it and I'm
8:58
like, it lines up. Maybe this is what it is.
9:01
Hey, this is yeah, could be, could be, could be, but I, I
9:06
didn't, I thought, you know, it's, it could go away and it's
9:09
not going to be, it's not going to be there anyway.
9:12
But three months later, I, I realized that this thing has not
9:16
left my body. I've still got this twitch in my
9:17
right, my right hand. But now I'm starting to feel
9:20
like stiff, like really stiff, like abnormally stiff.
9:24
And I thought, OK, again, did I work out too much?
9:27
Did I carry too many things around?
9:28
But because the stiffness, it was like a stiffness that when
9:30
you have a really good workout and then you, you, you got that
9:33
everything's stiff. So I thought, well, maybe I
9:36
should go to the doctor. Maybe I should just go get just
9:38
checked out. So, you know, of course I went
9:39
to the doctor and he started, you know, we went through all
9:41
these tests. I did the, you know, we'll be
9:44
doing blood tests and then MRI did CAT scans, did all the worst
9:49
tests that I think is the worst tests in the world is, and I
9:50
don't know if if you've had this and if you've had this, let me
9:53
know if you've had this. And I think it was the worst.
9:55
I call it like the electric shock, like it like, I call it
9:58
like the shock, the shock treatment.
10:01
And I really, I think what it's for.
10:02
I, I really, what I think it is, is it's, it's checking for
10:06
carpal tunnel is what I've told after.
10:08
But anyway, that was the worst one for me.
10:09
It's like this shoots these shocks all over your body and
10:12
see how your, your nerves are going to react to it.
10:14
It was awful. It was really, really bad in, in
10:17
my opinion, it was really, really bad.
10:20
But and so anyway, they, he, my doctor said I don't know.
10:26
I don't know what it is. Everything's cleared like
10:27
everything. You're passing all these tests
10:29
and everything. So I thought to myself, OK, no
10:33
problem. He said, I'm going to send you a
10:34
neurologist. So the first neurologist I saw
10:37
he, he kind of did some tests. Then he said, well, what do you
10:40
think it is? And I'm like, well, I dude, if I
10:43
could diagnose myself, I would. I'm here to, you're the pro man.
10:47
You're supposed to tell me what it is.
10:48
So I'm not here to guess. I, as I all I know is that I got
10:51
a shaking in my, in my hand and, and he said, what did he say to
10:54
me? He said, well, you know, what do
10:56
you think it is? What do you think it is?
10:57
What do you think it is? He kept pushing me.
10:58
And so I said, well, OK, just saying that, you know, my
11:02
grandmother had Parkinson's. I don't know if it's genetic or
11:04
not. And so I know she had a, a shake
11:07
in her hand. So I don't know Parkinson's
11:09
like, I don't know. And he started to laugh, like he
11:12
literally, like he literally started laughing at me.
11:15
And I said, I said, what's so funny?
11:18
And he's like, well, he said, do you know Michael J Fox's?
11:21
And I'm like, of course, I, you know, fellow Canadian, you know,
11:24
fellow, you know, movie star, of course.
11:26
Anyway, back to the anyway, I said, of course I know Michael J
11:28
Fox's. He goes, OK, here's what's going
11:30
on. So you're feeling really upset
11:32
because your grandmother died and you're feeling kind of
11:34
disjointed from her. And, you know, and, you know,
11:36
you've seen Michael J Fox and, you know, he's drunk.
11:38
So he said, you know, I just think what's happening is in
11:41
your head, you're trying to connect to your grandmother and
11:44
feel close to her. So you want to kind of maybe
11:46
have what she has. So in your head, you you're
11:48
telling yourself you have Parkinson's.
11:51
But he said the truth is that Michael J Fox is Michael J Fox
11:55
is an anomaly, OK? And it does not affect, you
12:00
know, their chances are when like, it's off, like it's not
12:02
going to happen. It does not affect people your
12:04
age, OK. And again, this time I'm like 39
12:07
at this time. And I was like, OK, so it's in
12:10
my head. And he goes, yeah.
12:11
And I said, OK, So what you're telling me is not only do I have
12:14
this twitch in my hand that now you don't know what it is.
12:18
Well, I guess you know what it is?
12:19
I'm freaking nuts. Like I'm crazy and he's like,
12:23
no, no, no, you're not crazy. And I'm like, well, that's what
12:24
you're telling me, man, That's in my head.
12:26
I'm making these things come upon me, which kind of really
12:30
kicked me off, you know, be honest.
12:33
So Needless to say, I I left and I was like, that's it.
12:36
I don't want any part of this. I told, you know, that's, that's
12:38
enough of that one. And about six months later, I, I
12:41
was, I was live sleeping and I woke up in the morning.
12:44
And when I woke up in the morning, I had my toes on my
12:51
right side. OK, so I'm twitched in my right
12:53
hand, my toes on my right, on my, my right, my toes on my
12:58
right, my right foot. How about that?
13:01
My right foot and the toes on my right, they were, they were
13:03
curled. They were crunched up like that,
13:05
like just curled right over. And I'm like, whoa, what is
13:08
that? What's happening?
13:10
And I couldn't get them apart. Like they were stuck and I
13:12
couldn't get them apart. I'm like, this is nuts.
13:14
What is happening to me? And so I'm like, oh man, I
13:17
better go back to my doctor, my GP and just tell him like,
13:20
something's really weird here anyway.
13:23
And again, at any time, please, any questions you have,
13:27
anything, There's nothing off. There's nothing offline.
13:29
Like there's nothing like off bounds.
13:30
Welcome here tonight. It's live.
13:32
I'm live. I'm with you.
13:33
If you're here right now, throw in the comments.
13:35
And if you don't have a comment, just tell me you're here.
13:36
Say hi. I really appreciate that.
13:39
Anyway, so I went back to the doctor and he said, OK, you know
13:43
what we're going to do? We're going to send you to a
13:44
different neurologist. I'm not going to send you back
13:46
to the guy, the guy that you don't like is what he said to
13:48
me. And I'm like, I'm not saying I
13:49
don't like him. I just felt strange about it.
13:52
So he sent me know another, you know, wait three months later, I
13:56
get this thing and I'm going to another neurologist and I'm just
14:00
going to kind of cut to the chase here.
14:02
He it's at the end of this hour and a half of weird testing.
14:07
He just said, I don't know what it is and I have no idea.
14:11
He said I don't really know and I can't diagnose you.
14:13
I just don't know what it is. And so I trust me.
14:17
I'm not saying Parkinson's this time like he he's like, what do
14:19
you think it is? I don't know freaking idea.
14:21
I have no idea what it is like. I don't know.
14:22
You tell me. I'm not even going to guess
14:24
here. And so and so I left that office
14:30
with SO1 Neurologist said I'm crazy because I'm too young to
14:34
to twitch and shake and have Parkinson's and the other
14:37
neurologist can't figure it out. And all I know is I still got a
14:40
twitch and every morning I wake up with my one foot of my 1 foot
14:44
curled. OK, I said, I guess I'm going to
14:48
have to figure this out. I'm just going to live this way,
14:51
I guess. What else?
14:52
Like what else are you supposed to do?
14:54
I don't even know what the I don't know what to say to that.
14:58
This is a really long answer to, to hey, Bryce, how do you know?
15:01
First something was off and and then Long story short, my
15:06
doctor, and this is a crazy story.
15:07
Actually, I'm going to tell you a really, you got to hear this
15:09
story because this doesn't even this story doesn't even make
15:11
sense to me. So I had this, this my, my GP,
15:13
my, my, my, my, my family doctor, my GP.
15:17
He I went back and I so now I'm avoiding him.
15:20
I don't even want to talk about this anymore.
15:21
I'm just going to live with the fact that I'm going to have this
15:23
like twitching going on and this curl toes.
15:25
I'm just going to live this way, just going to live this way.
15:28
And so I went back just for, I've had high blood pressure as
15:31
well. So I had to go back and get my
15:32
blood pressure checked, you know, like general stuff.
15:35
And in that conversation he says to me, he says, how is your foot
15:37
and your hand? I said, will you look at my
15:39
hand? What do you think?
15:40
Like, is it twitching away? And he goes, yeah, it's twitch,
15:42
twitching away. He says, I think we should send
15:44
you. I think we should send you
15:46
somewhere, like I think we should send you off.
15:47
And I'm like, I'm like, no, like, no, thank you.
15:53
I, I got, no, I don't want to like, I just don't want to, I'm
15:56
not like, I don't want to be, I don't want to succumb to that.
15:58
And he said, no, I really think you should.
15:59
And I'm like, no, I'm not going. I'm going to live this way.
16:02
And he was like, OK, well, you know, up to you, like up to you.
16:06
So, so anyway, I, I, I, I end up, I, I leave and three months
16:13
later this I get AI get a letter from a movement disorder clinic
16:17
and says, Hey, your doctor Lee has been, has referred you to
16:20
this to, to us and here's your appointment.
16:22
And I'm like, that's the son of a gun, you know, like he, he did
16:25
it anyway. He didn't listen to me and I was
16:26
kind of like kind of ticked at him and, and, but I thought, you
16:30
know, OK. And I googled something and I
16:32
saw something about movement disorder clinics being, you
16:35
know, be in the place to, you know, where to go, right?
16:38
Go to. So anyway, I'm like, screw it,
16:40
I'll just go to this movement sort of clinic.
16:42
Like, you know, 2 neurologists said, I was not sure whatever
16:45
you want to call it. The other one said he didn't
16:50
know what it was, but I'll just, I'll just go.
16:52
I was going to trust my doctor and go and hey, Tweedle
16:54
tweedles, Tweedles, how you doing?
16:57
And, and one of them said, so anyway, so I go, I just go, I
17:01
didn't tell anybody. And I just go to this
17:02
appointment and I get there and when I walked in the door, the
17:07
nurse says, I, you know, I checked in.
17:09
I'm like, Hey, what's your name on Sprice Perry?
17:10
And she goes and I got a 10:00 appointment and the nurse says
17:12
to me, I am so sorry. I am so, so sorry.
17:17
You know, I know it's a hard day, but I, but I, you know, I
17:19
just, I'm just, I'm sorry. And I'm like, what the, what
17:22
just happened here? Why is she saying like she's
17:24
acting like really like down like sad.
17:27
And I know I felt weird and I said, what's going on?
17:31
And she said, well, Doctor Lee, your doctor, your family doctor
17:35
was playing golf yesterday and had a heart attack and he died.
17:39
I and I went, what, What she goes, you didn't know?
17:42
And I'm like, no, I had no idea. She goes, Oh my gosh, I'm so
17:45
sorry. I, you know, I didn't, I
17:46
wouldn't have, you know, anyway, So I'm like, whoa, that's
17:48
bizarre. And then I'm waiting in the
17:51
waiting room and that's when, you know, and, and again, if,
17:54
when you go through diagnosis and, and you know, those, you
17:57
know, everybody, everybody who's been there say, yeah, yeah,
17:59
yeah. Or give me a, you know what?
18:00
There's like a little thing do this.
18:02
I, I want to just test this. If you're sitting here, please
18:03
just bear with me. There's like a little thing on
18:05
the side. There's like little hearts and
18:06
these little smile faces and stuff.
18:08
And if this, and trust me, if this happened to you, I hit that
18:10
:) like here, I'll hit, hit one there.
18:13
Can you see that thing go up there like like that?
18:15
Just smack it a couple times. If this happened to you.
18:18
And This is why it's so funny. This was the first time ever I'm
18:21
sitting in the waiting room. And the very first time, you
18:23
know, when you go to a doctor and the doctor's like they
18:25
they'll you sit in the waiting room and then when it's still
18:27
the nurse or somebody will come up to you and they'll say, hey,
18:30
Bryce, OK, hey, room 2. And they take you down.
18:32
They put you in room 2 and you sit and wait for the doctor,
18:33
right? Like that's that's normal,
18:35
right? So I'm waiting for that to
18:38
happen. But the next thing is I see this
18:39
this fellow come out in this white coat and I'm like, oh,
18:41
that must be the doctor. And he's like Bryce and I'm
18:44
thinking, man, this is the coolest.
18:45
This is the nicest place I've ever been.
18:47
The doctor comes out and walks me to my appointment.
18:50
That's so cool. Did anybody have that
18:52
experience? If you went to a woman disorder
18:54
clinic or like a neurologist where someone like they
18:57
literally came out and met you. Right.
19:01
And now, of course, now I know. Yeah.
19:02
And then we're getting some hearts there now or getting some
19:04
hearts like that. That happened to you.
19:07
Yeah, exactly. So, I mean, and I tell them now
19:09
I'm like, nice trick. Like now I know what, you know,
19:12
you watching me, you came to watch me walk.
19:14
You watch my balance. You watch to see if one of my
19:16
arms was swinging or not swinging, which by, you know,
19:20
funny things being said is that I didn't even realize.
19:23
So why did I feel like, what did I see?
19:25
I did not realize that one of my arms was not swinging when I was
19:28
walking. We didn't even know.
19:30
And, and it was like, sure enough, it was.
19:32
And so 5 minutes after I walked into that 5 minutes, yeah, OK,
19:36
we got to Yep, Yep, We got to Yep, Yep. 5 minutes after I
19:39
walked into that appointment, he looked up at me and he said, he
19:44
said, you know, you have Parkinson's, right?
19:48
And I went. Stay with us.
19:54
We'll be right back. Yes, yes, yes, I do, don't I, I
20:43
do. Oh my God, yes.
20:46
And and I had this like unbelievable excitement, like
20:50
not excitement was like finally I felt like maybe he believed
20:54
me, maybe, you know, and whatever.
20:55
And I'm like, and what an, what a wild way to respond.
20:58
And, and I wasn't even like sensing that there was, I was
21:01
thinking anything else. But you know, sure enough as I,
21:04
when I got back to my car and, and I'm not going to go into the
21:06
city, you can watch the videos about it, but I, that's when it
21:08
hit me. Oh my holy, holy blank, holy
21:11
blank. I've got Parkinson's.
21:13
What the heck? And that's when it hit me.
21:15
So, so back to my the original question, How did you first
21:20
know? I knew something was off because
21:25
shaking to one side, toast curler, one side stiff as hell.
21:28
Like so stiff, like I felt like 150 years old and I didn't know
21:33
like, and that was it. And now knowing to is that,
21:36
yeah, my arm wasn't swinging and therefore I also had some
21:39
balance issues. So that was the really the main
21:41
things that really pushed me towards to, to, to, to go get a
21:45
diagnosis. And I think the worst part of
21:48
the whole thing, and I don't know, I don't know if this is
21:54
you, you know, I don't know if you deal with this as well, but
21:57
for me, my stiffness is, is the, is the the biggest thing like
22:01
the stiff. I'm just just stiff like I'm the
22:04
tin man, right? I need the oil to get moving
22:06
and, and, and, and that, that stinks, right?
22:09
But anyway, so that was that question.
22:12
So, you know, again, that's how I knew.
22:14
There's so many early signs. I wish that I would have, you
22:16
know, I wish I would have picked up a bit earlier, but you know
22:19
what? Hey, it's OK.
22:20
We are what we are. And so that's an answer to that.
22:22
So again, any questions, throw them in to the comments.
22:25
Please Chuck them in there if you have any questions for me.
22:27
Doesn't matter what it is. Nothing's off limits, right?
22:29
If I know it, I'll answer it. If I don't know it, I'll tell
22:32
you. I don't know and I'll go get
22:33
out. Maybe I'll go look for the
22:34
answers, but let me know, you know, if anything you want to
22:37
know any. I don't care if it's personal.
22:39
It doesn't be Parkinson's. I don't.
22:40
Maybe it's something else I can ask or I can answer for you.
22:44
Let's see here, MMK? OK, Yeah, I guess what you're
22:48
saying is you had a PET or at the PET and the the PET and the
22:54
MRI and what we've got here, combining the posteromicious
22:57
sort of PET MRI allows for the stimulus image.
23:00
You know, dopamine resort is binding the brain surgery.
23:02
Very nice holy spokesman. There's some big words in that
23:05
one. There's some big words in that
23:07
one. And, and so here's the other
23:09
thing too. And you know, you become used to
23:11
Mris and I don't know how it works like, and I'm in Canada,
23:15
but you know, I had to go for a yearly MRI, OK, just, I don't
23:20
know, yearly MRI. So I, you know, you get very
23:23
used to, you get used to it, you get used to Mris, don't you?
23:29
You know, and and that's the least of my words, an MRI now
23:31
it's like nothing, right? Oh, I didn't realize.
23:34
OK, I didn't realize I was leaning forward.
23:36
OK, so there's the thing too, right?
23:37
Didn't leave as leaning forward or shuffling, not walking
23:41
normal. So exactly.
23:43
So that I guess that's isn't that interesting.
23:45
So like I just said, I realized that my hand was shaking because
23:49
I was visible. I could see it right there,
23:51
right? I could see it.
23:52
I realized my toes were curled up because I could feel it and
23:55
see it right in my in my hands. But again, I didn't know I was
23:59
shuffling my feet. And I'll tell you another funny
24:01
thing. And my my parents, I was talking
24:03
to my parents about it. I was the guy.
24:05
I was the kid even as a kid, they said, they said I, they
24:09
said be careful when Bryce is walking around the house because
24:12
he'll trip over, he'll trip over a leaf like he'll trip over a
24:16
baseboard. And I'm like, what are you
24:18
talking about? They said, well, you're always
24:19
bumping into baseboards and bumping into things.
24:21
Hey, Art. Hey, Art, nice to see you.
24:22
Thanks for joining us. Greetings to you as well.
24:26
But he and so now I'm looking back and I'm looking back and I
24:30
don't think I really lifted my feet up at all.
24:32
Like I think I've been, it's been a long time since I
24:35
actually really walked normal. But the things that we don't
24:37
notice and like you said, the leaning forward, yeah, I didn't
24:40
notice it, right. Maybe I thought maybe I only
24:41
went forward when I had too much to drink at night when I was a
24:44
teenager. I you know, I don't know.
24:45
But I think that that is something that those are signs
24:50
that people need to know, right? They need to know things to look
24:53
for and things to watch out for. And again, we're all different,
24:55
but there's a lot of similarities with all of us.
24:57
So that's a really interesting point, right?
25:00
And what do we got now? So we got a question here from
25:01
Dittos. Anyone with what do we got now?
25:04
Anyone with dry skin dryness? My dermatologist told me it
25:07
comes, it's common with PD anyone with skin don't.
25:12
So I don't know if anybody out there you can comment as well.
25:14
If you've got skin dryness. I don't personally like, it's
25:17
just not, not something that I, that I deal with, But I, I don't
25:21
doubt that it can come with that.
25:22
PDI know I have eye dryness and we try to wear contacts and it's
25:26
just crazy sometimes wonder why they why they make your mouth
25:29
drool. Why why does it make your mouth
25:31
drool in your eyes dry? Like, you know, can't we take
25:34
the drool, put it back in the eyes?
25:35
Like maybe that's why your eyes are dry.
25:36
Your eyes are actually leaking. You know, maybe the it's going,
25:39
am I getting crazy? You know, I just think the
25:41
wildest things. I think sometimes I watch it's
25:44
like watching a cartoon with me. But anyway, so that that's
25:47
something that yeah, again, I don't deal with what you do.
25:49
Oh, and, and art is listening from Kingston, Jamaica.
25:53
Awesome. Well, hopefully it's nice.
25:55
I bet you it's. I'll bet you it's not snowing in
25:57
Jamaica. I'll bet you it's not snowing in
25:59
Jamaica. But I'll tell you where I am
26:01
today. It's snowing and it's April.
26:05
I almost thought it was an April Fool's joke, but it's snowing.
26:08
And I'm not that excited about that.
26:12
I'm not that excited about that. All right, Neil, what do you
26:14
have to say here? It's my eyelids in my forehead.
26:18
OK? So, yeah, I will contest to
26:20
that. You know what I'm going to fuck
26:22
myself out of what I just said because I have right here
26:25
between my eyes, like right in here, here and here, right here
26:29
and here, right here. Throw dry and again dry around
26:32
here as well and it gets super my skin.
26:35
I can almost like scratch it off.
26:36
So there you go. Never even thought about it.
26:39
Never even never thought about it.
26:41
So maybe that is it. And that's where I get it Right
26:43
in here, huh? Very cool.
26:46
And West Virginia. Awesome is that is WV West
26:49
Virginia. OK, all right, well they're now
26:50
we're the same. So we both, we both have that.
26:53
So right between there and that's where I get it.
26:54
So I'm assuming that that's something we have in common.
26:58
So that's pretty amazing. Oh, what have we got?
26:59
Oh, wait a minute, wait a minute, who do we got now?
27:00
Got another one. Yep, skin dryness and runny nose
27:03
lol. Hey, from Australia.
27:04
Oh my God, look at this, look at this West Virginia.
27:08
Guess what, we got Australia, we got we got Jamaica, we got
27:12
Canada. That's amazing.
27:14
I love that. I mean, welcome, Joanne.
27:17
That's fantastic. And the runny nose thing, I'm
27:20
mad. I don't know if you can tell.
27:22
Maybe you can. Maybe you don't know the
27:23
difference. My nose, I'm ready to chop the
27:26
thing off some days now, driving me bananas.
27:30
It's stuffed and then it runs and then it's stuffed and then
27:33
it runs. Like, give me a break.
27:36
All right? Oh my God.
27:37
Now look at this Glenn. And where are we?
27:40
Glenn and and Jean Jeanie, Glenn and Jeanie from Lincolnshire,
27:43
England. Wow.
27:45
We're circling to go. Welcome, welcome, welcome.
27:48
Wow. I'm just, I'm, I, I don't know
27:51
what to say. I'm blown away right now.
27:52
You know, when I, when I started doing this, Florida, my God,
27:57
Florida. I used to live in Florida.
27:58
I lived in Jacksonville, FL for 10 years.
28:00
Welcome, welcome, welcome. So, you know, we got United
28:03
States, we've got Canada and we've got Jamaica, we've got
28:07
England, we've got Australia. I never once thought.
28:11
I never ever, ever once thought that.
28:14
I'm humbled. Thank you for being here.
28:17
I appreciate it. I really, really do.
28:19
It's amazing. I thank you for being here
28:22
again. Anything that you want to ask
28:23
me, you ask away. I've just kind of left this
28:25
myself open. I do have questions that were
28:27
sent in, you know, but I I'm, that's why I just wanted to be
28:30
here. If there's something we could
28:31
talk about, yak about and do it. And what's this now?
28:34
Runny nose to runny nose. Runny nose.
28:36
Thought it was my allergy. Oh, my God, allergies.
28:38
Another Florida look at the Florida Indians.
28:40
Are you guys here Because I used to live in Florida.
28:43
Welcome, Paul. Welcome, Paul.
28:44
Welcome, Paul. Hey, aren't you know, it's
28:48
interesting you think about what I just said.
28:49
We got, you know, Australians, aren't we all in some type of
28:52
weird trade war right now? Awesome, amazing.
28:57
We've gone international. We have gone international.
29:00
That's amazing. I love it.
29:02
It's so awesome. And I just thank you.
29:04
Isn't it interesting that we're sitting here today all around
29:08
the world and all kind of dealing with the same thing and
29:11
thinking the same thoughts and, and seeing what we have in
29:14
common and don't have in common? And it's quite to me, it's quite
29:16
interesting. It's quite, quite exciting.
29:19
I'll tell you about a little bit about my day today.
29:23
Yellow heart, red there. I love it.
29:24
I love it, love it, love it. So I did a radio interview and a
29:27
television interview. And I'll be honest with you, the
29:29
television interview, I was so upset.
29:30
I was so mad because they told me they kind of tell me a couple
29:33
of the, you know, a couple of questions they're going to have
29:35
and, and I'm all prepared and ready to go.
29:37
And, and they're like, what's the one thing that you don't
29:39
want to talk about? They always ask you what do you
29:41
don't want to talk about? And so one thing I said, like,
29:44
I'm not qualified to talk about where it comes from, right?
29:49
Why, how do you get it? Like, what do you get it?
29:51
Because, and again, just so, you know, just so we're on, so you
29:54
know, I work, I am the associate director of, I am the associate
30:00
director of community engagement and outreach for Parkinson
30:03
Canada, which is the national organization here.
30:07
So I have some authority, right? I have some authority.
30:09
I, I've got some stuff. And that the one thing that we
30:12
always say is that when it comes to like, where's it come from?
30:14
You know, the line that that we're supposed to use and uses
30:18
that, you know, we're not 100% sure.
30:21
That's why we need more research and more dollars for research
30:23
go. But you know, most of it leads
30:25
to genetics and environmental. OK.
30:28
And so, so that's but anyway, but we, so because we don't,
30:33
it's Parkinson's awareness, we're trying to bring awareness
30:35
and just stigma and, you know, to get into it.
30:38
And so we so, so they always say so well, let's look into that.
30:42
Let's talk about, I said, let's talk about this, that let's
30:46
bring awareness to the fact that, you know, if you get
30:48
diagnosed with Parkinson's, it's not a death sentence.
30:50
So, you know, a diagnosis is not a death sentence.
30:53
So you can still live a healthy, productive life, right?
30:55
There's some changes you have to make.
30:57
And we got to bring that and we got to make sure that, you know,
30:59
we get more out there, more programs and more services and
31:02
more accurate information so people can live the good life
31:05
and, and, and, and, and live a life to it, to the best of that
31:09
we can. Because I still believe that and
31:10
I know that and I believe it. I'm a testament to it.
31:13
And what does she lead with? She's like, she's like, oh, hey,
31:15
you were diagnosed at 40 years old and, and you know, and, and
31:18
it's how, what was that like? And I'm like, oh, it was great.
31:21
Like it was awful. It was terrible.
31:24
You know, and I tell a little bit of story and she says, make
31:26
sure you tell your story in like a minute and a half.
31:27
And for me that a minute and a half.
31:30
Give me a mic Anyway. So, so the very first question
31:36
she says is, OK, so Bryce, you know, let's get into this.
31:39
OK, So what, you know, what's, what causes Parkinson's?
31:41
And I kind of, I'm like really like we're going here.
31:44
And then she goes on to ask me all these other questions that
31:47
weren't on the list. So I was like kind of ad libbing
31:51
a little bit and it was awful like I was, but it was good.
31:53
It was good because you know what?
31:55
Anyway, we got out there, we got some, we got advocacy, we got
31:57
the word out. We're like, hey, this is, you
31:59
know, we need, you know, we need accuracy there.
32:00
And then I did a radio interview after that.
32:02
So this is again now it's just like 2 days in a row when I'm
32:05
doing like a whole bunch of all these things.
32:06
And the radio interview was amazing.
32:09
It was amazing because she I could tell she was interested
32:13
and she wanted to know more and I was you know, so again, love
32:17
doing that stuff and then that's kind of what I thought my lot
32:20
would be. I don't even know how I got down
32:21
this path, but that's where we got anyway.
32:24
What is this now? Hi, Bryce.
32:25
Let's see what this says here. Oops, sorry if I if somehow
32:29
your. Your thing runs away.
32:32
Here's your thing. Runs away.
32:33
If your comment disappears, trust me, it was not on purpose.
32:36
OK. Hi, Bryce.
32:37
Thank you for the show. Incredibly important.
32:39
I'm a physiotherapist. No, is that a psychotherapist?
32:43
I'm sorry. Psychotherapist and I work with
32:45
both individuals Parkinson's and family members caring for loved
32:47
ones of the disease. Amazing, amazing.
32:51
And I don't know what to call you, so I call you a like a
32:54
linko. But thank you, thank you.
32:57
Thank you for what you do. I mean, I love man, That's just,
33:03
you know, thank you for what you're doing.
33:04
Oh, and hold on, in your experience, what do you think
33:07
are the most important psychological or emotional
33:09
aspects to explore in therapy for those affected by
33:11
Parkinson's? That is a great question.
33:14
And I would say this and one of the other, and I'll tell you
33:17
this is not just for me, not just from my personal
33:19
experience, but also from my my work experience.
33:24
So one of the teams that I run for Parkinson Canada is called
33:27
The Information and. Support team.
33:29
And we have a live toll free number for Canadians to call
33:33
that they can call and get support, information, resources,
33:36
referrals, things like that. So I'm Privy to the fact of what
33:41
people are calling about and for.
33:43
And oh, and especially since COVID, which is this is this is
33:47
quite interesting. I think, I think one of the
33:49
greatest things and one of the biggest things, and there's,
33:51
there's some of it's misunderstood and some of it's
33:54
like we need to know. But the apathy, OK, the
34:03
depression slash apathy side of this, of this disease, OK, is
34:08
huge. It's, it's huge because we have
34:11
many caregivers. And if you're a caregiver, God
34:14
bless you, love you, thank you for what you do.
34:16
I mean, it's, it's tireless. And I know being a caregiver is
34:19
frustrating. I know it's, it's, it's, it's,
34:21
it's, it's, it's great patience and I respect that so much.
34:26
But there's so many caregivers a call that just like I've had it,
34:30
I've had it like this diagnosis is an excuse to be lazy.
34:35
That's what they say. There's an excuse to be lazy.
34:38
And, and so our team would like, we'll tell what's going on,
34:41
what's happening. And they're like, they just,
34:42
they, they lie on the couch all day.
34:44
They, they one day they're great.
34:45
One day, you know, one day he takes out the garbage.
34:47
One day he hits the grass, sticks with the garbage, goes to
34:49
work, does all this stuff and his kind of his normal self or
34:52
her normal self. And the next day, the next day
34:57
they're they're on the couch and, and, and why are they so
35:02
lazy? And it's like, my gosh, you
35:04
know, that one of these things that are hard to explain and
35:07
they're almost sound impossible is some days are good, some days
35:10
are bad. Well, when is the bad day hit?
35:13
Don't know when I wake up, it hits and look at that.
35:15
I just saw it. So just one SEC and I'm legal,
35:19
illegal, illegal. This one.
35:21
That's a caregiver right there. Hi, honey, thank you for joining
35:25
my life. Thank you.
35:28
That's amazing. That's my wife just celebrating
35:30
our first anniversary. So amazing.
35:33
Love that, love that woman. But anyway, so that's a really
35:37
misunderstanding. It's the apathy behind it.
35:38
And and you know, and if you ask, you know, if we do a straw
35:41
poll right now, how about we do this?
35:43
Anybody who has Parkinson's again, on the right hand side,
35:45
there's like a little, let's do this just for fun.
35:48
There's like these little emojis you'll see like the hearts on
35:50
the side. They're like big.
35:51
There's one that looks like like fireworks or like a party, like
35:55
a party thing. And if you can see that rule
35:57
across your screen, if you're on the right on the live.
36:00
How about we do this if you. Have off days where you feel
36:08
tired, exhausted, frustrated and have no idea why and cannot
36:12
predict it's coming. Hit that little button right
36:14
there. Let's see if any of those things
36:16
fly up and down just as an example to show you that it just
36:20
happens and there they go, right?
36:24
So that's something that is such an odd and it's hard.
36:28
And when somebody says to you, you know, why aren't you doing
36:32
this or why aren't you doing that?
36:33
That's a tough thing. It's really, really tough. 2nd
36:36
to that, the other side to it is isolation, right?
36:40
Parkinson's is such an isolating disease.
36:42
If you create that hit the hit the heart button on that, the
36:45
isolation is so hard and so many people are they they, we, we
36:49
tend to isolate because number one, am I going to embarrass
36:51
somebody if I go outside when I'm looking like this?
36:54
Or am I going to get, you know, if you go through the just even
36:57
just read the comments from the videos and just watch and see
37:00
what people say and you'll see them say like, Oh, I didn't want
37:02
to go on a trip because what if I'm too tired?
37:04
I'm going to, I'm going to let my family down because I'm not
37:06
gonna, you know, I'm not, we're gonna pay all this money, go
37:08
over here and I'm gonna have this day where I can't do
37:10
anything. And we're gonna, it's a waste of
37:12
money. It's a waste of time.
37:13
And it's Oh my gosh. And, and so we, we're so worried
37:16
about what's gonna happen or what could happen or what's
37:18
gonna, what's gonna be that? It's, it's, it's, it's
37:23
debilitating or we're embarrassed of our symptoms.
37:25
You know, I can't go sit in a restaurant because I don't want
37:28
people to stare at us or I don't want my people that I'm with to
37:31
feel awkward because I'm shaking while I'm eating or, and things
37:34
like that. So then we tend to isolate.
37:36
We tend to, to, to get and go in ourselves and stay in ourselves.
37:40
And we can't do that. We can't do that.
37:43
That's, that's, that's dangerous.
37:46
And that's why. Excuse me, that's why.
37:54
Hello, Living with Hello. Living with Parkinson's.
37:56
How are you? Where are you from?
37:59
That's why Excuse me. That's why I'm such a big
38:03
promoter. Going to support groups or going
38:05
into a group or being active, seeing people doing something.
38:08
Even this getting involved, watching, looking, hearing
38:12
another side of the story, hearing the story that it it
38:14
it's going to be OK. You're going to live.
38:16
You're going to you can still live productive hearing the good
38:19
stories. Not just the bad stories and,
38:20
and, and isolating ourselves in. So those are to me, the main
38:23
things that we we come across and we do.
38:26
And, and you know, honestly, I was five years in, five years
38:29
in, I didn't want to, I didn't want to deal with it.
38:31
I didn't want to see people. I want to stay away and it was
38:33
just what I wanted to do. So I'm hoping that answers your
38:35
question. I think I'm so excited that
38:37
you're here and and I'm hoping that we're going to get you know
38:42
that. But again, anybody throw it in
38:43
there, you know, anything you want to know?
38:45
We've talked about dry skin. Now we've talked about that was
38:48
a great question and thank you for that and talked about, you
38:50
know, what are the the biggest challenges and emotional
38:52
challenges. I think one of the other things
38:54
that you know, if, if, if no one else is going to ask me a
38:56
question, I'm going to keep answering them so I can talk all
38:58
night. But one of the other things too,
39:01
that I, that I know it's very, it's frustrating for me.
39:04
And so like an oxymoron thing where people say, you know, you
39:06
look, you don't look like you have Parkinson's, or maybe you
39:08
don't have it as bad as they have it or, oh, you know, well,
39:11
maybe it's better you got that than something else.
39:13
And it's like, come on, man, That's awful.
39:15
Like, that is awful agitation. Yeah, the agitation, the
39:19
frustration, Like it's, it's, it can eat at you, right?
39:23
It can eat at you. It really, really can.
39:29
And that's tough. That's tough.
39:31
So here's a great question in the in the in the comments and
39:36
I'm going to, I'm going to take a straw poll before I answer the
39:38
question. Does anybody know what dystonia
39:40
is? And if you do or if anybody
39:42
doesn't know or does know, and the reason I'm asking that is
39:45
because I feel like I get asked a lot about dystonia and I feel
39:54
like there's some people like it's some different for
39:58
everyone, if that makes sense. So I'm going to put it up there.
40:00
And that's just from Paul. Paul, thank you very much.
40:01
Do you have dystonia? So this is my relevance of there
40:07
we go, OK, I'm muted myself. How do you like that?
40:09
So this is where this is my thing with dystonia, right?
40:11
So do you have dystonia? And that's not involuntary
40:16
movements, right? And it's more or less swaying
40:17
that kind of kind of, you know, it's kind of moving.
40:20
You're in different in different ways.
40:21
And if that's if you feel it's different than that and you've
40:24
heard it's different than that, you let me know what you know
40:27
what you think it is. But that's what I think it is.
40:30
And that's the answer to that question is.
40:33
And the psychotherapist is really going to love this
40:35
answer. So to lean into this one,
40:38
because I have this, yes, I can. I'm going to answer your
40:45
question. First of all, yes I can.
40:47
I can and yes, I think I can control it.
40:51
Now when I when I have it a lot is when I take too much levodopa
40:58
and that does that. Does that happen often with
41:00
Bryce? No, no, no, no, it doesn't.
41:01
So I don't say that Willy nilly and think, Hey, you know, I just
41:04
take too much Levitop and I do it.
41:06
But but I know that I have a overdose and whatever we do,
41:08
that is when I thought I took my meds and or I thought, oh, maybe
41:11
I missed my meds. I don't feel it.
41:12
And I take more and then I realize I had a little bit too
41:14
much. I start, I really start to sway.
41:16
They start moving a lot, right. And I don't want to be careful
41:18
so you won't hear me, but it's a lot like I cut this thing and I
41:21
and I do this thing and my hand is this wild.
41:24
This is my hand does OK, So if I let it go, this is my hand wants
41:28
to do. I don't know if you can see
41:30
that. Can you see that?
41:31
OK, like my hand just I my wife says that I'm looks like I'm
41:35
like rolling coins. So this is what my hand does.
41:40
OK, and I'm I'm well medicated right now, but I just let it go.
41:45
This is what happens and then I'm going to OK, I'm going to
41:48
and then I can, but I can stop it so I can see the tremor.
41:53
My my fingers still do their thing.
41:54
So this is fully medicated, but it's not doing that rolling
41:58
anymore. And so I can control that.
42:04
Take it or leave it, it's just saying to me, but I can control
42:06
it to a point. But that's what my body wants to
42:09
do. And my legs want to do that too.
42:11
But my right side of my legs, my legs just go wild.
42:14
They want to just have a party and maybe it's just a Bryce
42:18
thing, but Bryce, I don't know, Bryce doesn't want to have a
42:20
party right now. So Bryce just stays as still as
42:23
he possibly can or he tries to protect or hide it, right.
42:25
I have all these these hides and I'm sure you do as well.
42:28
The hides where you can like literally like, you know, have
42:32
the one hand under, under your, let's say your thigh when you're
42:35
sitting down to hold it in place and making sure that it's still
42:38
sitting there nice and still and, you know, or holding the
42:45
hand, you know, holding your hand, you know, so I'm always
42:48
like this. So I'll be standing there just
42:53
kind of holding my hand in there, hold my hand.
42:56
Or if I'm laying down, I'll just grab hold on to my foot and my
42:59
toes and. Oh yeah.
43:00
Legs, yeah. Legs at night, legs at night,
43:02
legs. Yeah.
43:04
And at night time's off like during the night, like it's
43:07
everything's off limits at night because I I don't know kind of
43:10
crazy dreams. I can roll around, I can flip
43:12
around. I can do my whole body just has
43:14
it's has a little party in the bed and art saying the toes and
43:18
Paul Paul is Paul Paul asked question.
43:21
Deedles. I know that's not your name,
43:22
Deedles, but anyway, legs at night.
43:24
Absolutely toes got it everything and so definitely.
43:27
But for whatever reason, I feel like I can control it and I
43:29
don't know if I'm scared of not of getting to the I'm not.
43:32
I think I wonder, and it's so funny that you brought this up
43:35
because my, my wife and I actually talked about this last
43:37
night because I said, you know, she asked and, and, and she'll
43:41
give me a big heart on that one too.
43:42
I know she asked me, you know, do you think that you're afraid
43:45
to let it go because once you do, you'll never be able to
43:49
control it again? And I'm like, I really don't
43:51
want to control it. I'm not embarrassed of it.
43:53
And I've had this thing for 15 years.
43:55
So I'm, I'm beyond embarrassed, right?
43:56
I'm beyond the vain things gone. I'm I'm not the the young stud
44:02
looking stud. I wasn't anymore, you know, as I
44:04
was when I was a young guy. So I'm beyond worried about what
44:08
I look like. OK, It's not about that.
44:11
But you know, so there is some element of control in there.
44:14
But I know the day it's get this coming where it's gone.
44:17
And I know that when if I'm truly relaxed and this is what I
44:22
this is what I think. I think that holding back your
44:25
symptoms, OK, holding back your symptoms and do me a favor.
44:30
If you think you can hold back your symptoms, you know, I don't
44:34
know, put something in that that I know just like put a thumbs
44:37
up. If you think you can hold back
44:39
to your symptoms, just give me a thumbs UPS on the see if it's
44:41
just me, OK? But I kind of think you can
44:46
because a lot of caregivers tell me or ask me all the time, why
44:51
would we go to the doctor when I go for my 6 month or my three
44:55
months movement disorder neurology appointment, Why does
45:00
he or she act so good? And I'm like, what do you mean?
45:02
Actually, no, they act. They're just good.
45:04
They just walk in there like nobody's business where the day
45:06
before they were shuffling through.
45:09
It's like, why do why are they put on their best performance at
45:11
the doctors? And so for me, that tells me
45:14
that it's not just me that can kind of like hide my symptoms if
45:17
I need to hide them for a little bit.
45:19
And, and again, some of us might not be able to and some could.
45:21
And there's mostly, yeah, mostly, you know, like that.
45:24
And that's what I mean, like, you know, mostly.
45:26
And maybe, maybe early on. And if you got it early on, you
45:28
could do it better than than you can now.
45:30
I don't know, but we can. And so, but here's my theory and
45:35
it's so cool we're talking about this because I thought of this
45:37
last night. My theory is this.
45:40
I think that trying to resist and hold and avoid is actually
45:46
way more work for us than letting it go.
45:49
And I think that plays into me being exhausted at the end of
45:53
the day. If you think about it, you're
45:56
spending the entire day where either consciously or
45:58
unconsciously. And I think mine's unconscious.
46:00
I don't purposely do it like, hey, Kate, today I'm going to
46:02
fight off this tremor. But I think I've just got used
46:04
to just kind of just being. Yeah.
46:06
Irving Art. Art says sometimes.
46:08
Yeah, I think sometimes. That's what I mean, right.
46:10
I don't mean all the time. I don't mean every time, but
46:12
sometimes I think we can. I think we can play it a little
46:14
bit. I think we can stop him for a
46:16
little bit. We can kind of really buck up if
46:18
we have to. And.
46:19
And anyway, that point being is I believe though, that that must
46:23
be so hard on our bodies, right? Like it must be so like we're,
46:26
we're, we're actually fighting this thing all day long or, or,
46:29
or whatever, whatever it might be, fighting all day long,
46:32
fighting all day long, fighting all day long.
46:33
You can tell like hear my voice right now, my voice is getting a
46:36
little bit raspy. Some would call it sexy, but no,
46:41
it's a little bit raspy. And that's really, it's getting
46:44
tired because I've been into doing interviews all day and
46:46
I've been talking all day and and it's so you can tell.
46:49
So it's getting tired. So I'm thinking my body must be
46:51
the same way. Right.
46:54
Yeah. I know what you're saying.
46:55
What's that say? Yeah.
46:56
Hey. Hey, Dolores, how are you?
46:58
Yeah, I know what you're saying. Yeah.
46:59
I feel exhausted. Yeah.
47:00
Exactly. Right.
47:01
Absolutely. Absolutely.
47:03
So. And did I watch the Michael J
47:06
Vox documentary still? I did.
47:07
I absolutely did. I I did.
47:12
And so that's what it is. OK.
47:13
Yeah. Know what you're saying.
47:13
Feeling exhausted. OK, cool.
47:14
And what's now? We've got another one here.
47:15
What about the cognitive? You just forget stall.
47:19
Really. Yeah.
47:21
Tell me about it. Those are those, look, those
47:23
little motivational morning things I do, those are like real
47:26
things. I don't just make those up.
47:28
And it's kind of what pissed me off that day or that week.
47:31
And so I have a lot in there about forgetting what I was
47:34
going to say next, right? Or just stalling out and I'll,
47:39
I'll be honest, OK, it's just me being vulnerable that freaks me
47:43
out. Like like doing this at first.
47:44
It's like, I love doing this because I love, I love being
47:47
around people. Like I do like I want to, I want
47:49
to, I can do this all day. I can sit around do this all
47:51
day, but half of me is kind of going up.
47:53
But what happens if like what happens if if all of a sudden
47:57
you just like, like, well, guess what?
48:04
If that happens, it happens. And you know what, I'm kind of
48:07
thinking that most people that are going to be in here would be
48:09
OK with that and don't understand it and, and, you
48:11
know, have grace with that. So I got to that point.
48:14
But anyway, but it's frustrating.
48:16
Oh my Lord, it's frustrating. And I've done it in the in, in
48:19
some of my podcasts and videos where I'm literally, and I think
48:22
the one that most people commented on where I was like,
48:24
you know, I had, I had someone in my life that was saying that
48:27
wanted me to like I had been diagnosed with Parkinson's and
48:30
someone in my life wanted me to have a second and a third and a
48:33
fourth. And I sat there and I sat there,
48:39
I could see the word. I've used the word a million
48:42
times. I knew the word, I could see it
48:44
in my head. I knew, I knew, but I could not
48:46
tell my mouth to say it. It would not come out.
48:49
And it was opinion, right? Like a second and a third and a
48:51
fourth opinion. And it's opinion.
48:54
It's opinion, opinion. How opinion.
48:58
I, I've said it since that day. I've said it, I must say it 20
49:01
times a day. Opinion.
49:02
I've got opinion, opinion, opinion, opinion, opinion.
49:03
I know the word opinion, but what the heck.
49:08
And it just floors me. You know, one of the things that
49:12
I used to do that I thought I was really, really good at is I
49:15
my memory. I remember things that because I
49:17
always put people, you know, and if, if we need me and as it, you
49:20
know, as we become in relationship, I'd be like, like
49:23
Deweedles or whatever. Hey, Deweed.
49:25
Hey Deweedles. And you know, I'd know the real
49:27
name, but I'll still call them Tweedles.
49:28
I associate things with things. I'd call people.
49:31
I'd have nicknames for everybody.
49:32
And there was a joke around the office.
49:34
Actually, there's a joke at Parkinson Canada around the
49:36
office because there's like we have 17 Michelles.
49:41
And so I, I mean me remembering who's who and, and that's
49:45
Michelle and the same Michelle and they all say what?
49:47
So I just start making names up. There's a there's a, there's a
49:50
really nice beautiful woman. She's such a beautiful spirit
49:53
and she's got a purple streak in her hair.
49:55
So, but I, so I call her pH purple hair.
49:59
And I'm like, hey, so am I saying, hey, we need Michelle.
50:03
So I'll be like, hey, I need John, Michelle, Corinne and, and
50:07
pH and I need you to go over there.
50:08
And they're like, and she's like, well, that's me, that's
50:11
me, you know? And so I could relate and do
50:13
that. And that thing freaks me out
50:15
because it's just disappearing. I'm losing that ability.
50:17
It's like my superpower, it's going away and, and those things
50:20
really, really get on me. And so, yeah, the cognitive
50:23
issues are stonkey, stonkey, stonkey.
50:26
OK. LOL.
50:27
My husband finishes my thoughts. Yeah.
50:29
Hey, hey. Your husband finishes your
50:31
thoughts. Like, good for like he's good.
50:34
Sometimes you're really glad he's there.
50:35
So other times you're like, you know what, You know, I got this
50:38
right. Don't finish that thought.
50:39
It's a bad thought. But I, yeah, that's a very
50:43
frustrating thing. So it depends.
50:45
Like, some things will frustrate you more than will frustrate me.
50:48
Some things I don't even care about.
50:49
That'll probably frustrate the, the, the whatever out of you,
50:53
right. And it's just what, what I think
50:56
it's like what matters most to you?
50:57
So I speak for a living. That's what I do.
51:01
And so if you're going to attack my voice, you're going to attack
51:03
my memory. That makes me mad, right?
51:08
I had the worst handwriting growing up and still I was the
51:11
worst. So they're like, hey, you got
51:12
Parkinson's. Your handwriting is going to be
51:14
bad. I'm like, it can't get worse.
51:15
I could give a damn. I don't even care.
51:17
This thing shakes that much because it's it's not a big deal
51:19
to me. But you attack what I something
51:21
that's going to affect me. That's what when I get my when I
51:24
get frustrations right, it just drives me bananas.
51:28
And what does Wheedle say? Have you ever been listening to
51:30
an old song? You know the words, but they
51:32
don't come out right? They they don't come right.
51:35
Exactly. Songs they've been singing for
51:37
decades. That's that frustrating thing.
51:39
Hey, it's something you know, you know them and you're like, B
51:44
for me. Songs my wife, my wife can pick
51:48
up like anything. You're like, hey, what was the
51:50
theme song for this television? She just belts it out.
51:52
She'll just belt things out and I'll be like, hey, I know that
51:55
one. And I'm like that, that, that,
51:56
that. And it's like, what the heck is
51:57
the next line? And it's just not there.
51:59
And yeah, and that, that stuff that's can get you it.
52:02
So back to our, our psychotherapist back there.
52:04
That's some of the things that that that doesn't.
52:06
So those frustrating moments. And so how do you deal with
52:08
them? I guess that's the bigger
52:09
question is, you know, it's, I think there's value.
52:12
Excuse me? I think there's value in knowing
52:17
that we're not alone. There's some comfort there,
52:20
right? There's some comfort for me.
52:22
I deal with it with humor. Like I said, I, I, that's not,
52:24
it's, I've always just kind of been that way.
52:27
I know I'm just like kind of make fun of it.
52:28
And then that's how we deal with it.
52:29
But I think there's so much value that I'm not the only one.
52:33
I'm not alone, but someone else is going through what I'm going
52:35
through and maybe we can laugh about it together and maybe we
52:38
can share that together and maybe, you know, they, it can
52:41
help through that. The reality is I'm still here.
52:47
I'm still talking. I talk slower than I ever did.
52:50
And some of you might think I talk fast.
52:52
You should have seen me back in the day, back to all our Florida
52:56
people online. I used to travel around Florida.
52:57
I've been, I was all over the place doing things on stage and
53:01
stuff. And I am man, I talk so fast,
53:04
like fast fast. And so it's slowed my the way I
53:08
speak down. It's slowing the way I read
53:11
down, right? It slows things down and So what
53:15
do I do? I just have to adjust to that.
53:17
I have to adjust the fact that I'm it's going to be a bit
53:20
slower and so I now, even when I'm going to, you know, speak
53:24
and do something I'm I have to think ahead and plan for it and
53:27
prepare for it and and understand it and you know what
53:30
I'm OK with that. I'm OK with that right.
53:34
What do we got here? So we got got some more here.
53:36
I'm going to get some more comments in here.
53:37
We're getting close up to an hour.
53:39
Remember here, yes, comfort knowing others really understand
53:42
you right, Dolores, Like I agree.
53:43
Like it's like I said to someone to, to, I don't know if I said
53:49
this on the interview today or not, or I was just sending this
53:52
to someone in person. I can't remember.
53:53
But you really don't know what it's like unless you have it,
53:57
you really don't. We can try to explain it.
53:59
We can try to cover the bases, but you just don't get it.
54:02
You just don't know. So to know that somebody else is
54:06
kind of experiencing that loss or that that change is, is it's
54:12
comforting. It's comforting to know that and
54:14
and then to see people that have gone through it.
54:16
I mean, I'm reading some of the comments and some of you guys
54:18
were just amazing. Like, hey, I'm 80 years old.
54:20
I got and I'm doing, I'm like 80 years old and you're doing that.
54:23
That's fantastic. That makes me excited.
54:25
Like I'm like, wow, I got so many more years left.
54:27
So I appreciate that. I really do.
54:30
I really, really do. Or you've been watching the same
54:31
program for years, years on and it all of a sudden cannot
54:35
remember what channel it's on exactly.
54:38
What is it? I'll forget the name of the show
54:42
that I know like my wife and I'll like binge something.
54:45
Hey, we're going to binge this and we talk about it and we're
54:47
all over it. And then I'll be like, hey, do
54:49
you want to watch that show? That show, that show we just
54:53
watched like and gone, it's gone, gone, gone.
54:59
Jeannie says Parkinson's is no is no great shakes.
55:04
I like that one too. It's no great shakes.
55:06
I love it. I love it, I love it, I love it,
55:09
I love it. And Paul, I appreciate that.
55:12
Thank you so much. You know, I'm humbled to do
55:14
this. This is just let me tell you
55:18
this. So when I couldn't work at my
55:21
job anywhere, I like my corporate job.
55:23
So I was AI was a the general manager of a automotive supply
55:28
company and it covered 3 provinces of Canada,
55:32
Saskatchewan, Manitoba and Northwest Ontario.
55:34
And there was about 60 stores, retail stores.
55:38
I had 60 retail stores, three at the DCI had franchisees.
55:43
I had, I had probably about under my realm of, you know, I
55:47
had managers and managers and sales forces and everything
55:49
else. But I actually had like tons of
55:53
people. Anyway, when I couldn't do that
55:55
job anymore and I just that was it.
55:56
I was tired. I couldn't, I knew mentally I
55:58
couldn't do it anymore. Physically I couldn't do it
56:00
anymore and I was like semi retiring.
56:04
I went, I I thought to myself, what do I want to do?
56:07
I said, well, you know what? I've always been a motivational
56:09
speaker. I've always put on seminars.
56:11
I've always done these things. I'm going to start a YouTube
56:13
channel. OK, this was 2122, can't
56:17
remember. I'm really bad with the years,
56:18
by the way. And if you ever, you know, when
56:20
you're watching the podcast, I might say, hey, in 2022 I did
56:22
this and the next podcast I might be 2021.
56:24
I didn't do it on purpose. That's just, I know it's weird,
56:26
but I thought I'm going to start.
56:28
So I started doing a podcast, sure, YouTube channel, you know,
56:32
motivational, how to live your best life, how to do all this
56:34
stuff. And I had Parkinson's, of
56:35
course, I had Parkinson. I had for 10 years at that time
56:37
when I started that or almost more 11 or 12 years and and then
56:42
I started doing that And then I, and then my, I went on, I did
56:45
Instagram and I put it on. What's the other one?
56:49
Tik TikTok, TikTok, TikTok, you know where all the kids are and,
56:55
and they were just doing nothing like just, but I was just having
56:57
fun. But I'm like, hey, I'm gonna,
56:58
I'm gonna, I'm gonna be a, you know, motivational person,
57:01
inspire people. And I started doing that and my
57:04
wife, my wife and my, my, my daughter, I took one of my
57:09
videos that was a about, you know, living your best life.
57:12
And sometimes you have to chase a different dream.
57:14
That dream is dead. And my daughter and my, my, my
57:17
daughter and my son's girlfriend, they, they cut it up
57:20
and they made it look like, like a breakup thing, like, you know,
57:23
you know, when you're dating somebody or, and, and you know,
57:26
when it's over, it's over, time is over.
57:28
And they put it on my TikTok page and it went viral.
57:31
I have like on TikTok and Instagram on this one eight
57:36
second reel has over 1,000,000 views on each one and then I
57:42
blew up. So I don't know if I have 60,000
57:45
followers on TikTok and 40,000 on Instagram all over these like
57:49
dating things. So I just started following the,
57:52
the trend of the dating trend and doing that.
57:55
And anyway, Lee is to say about a year later, I started with
58:00
Parkinson Canada. I started doing a bunch of stuff
58:02
and, and so I just kind of walked away, you know, just
58:05
stopped, stopped doing it. I never ever talked about
58:07
Parkinson's. I never got into the
58:08
Parkinson's. And it was November of this year
58:11
and I was sitting with the CEO of a Parkinson Canada, Karen
58:14
Lee, and we just had hosted APDIQ&U event.
58:20
And so we were talking and, and she says, hey, you're an
58:22
influencer, man, you have a lot of followers and stuff.
58:24
And I'm like, Oh yeah, you know, blah, blah, blah.
58:26
And she goes, how come you never post about like Parkinson's,
58:29
like, why don't you ever do that?
58:30
And I'm like, well, well, I'm busy.
58:31
We've got a lot of work to do. And she's like, you should do
58:33
that. Like you like you got to, you
58:35
should do that. You help people do it, like, you
58:38
know, do it on your spare time. Do it.
58:39
Just get out there and help people.
58:40
And, and I thought, OK, you know what?
58:42
That's good advice. I'll, I'll take that Karen.
58:45
That's great. So around December or January,
58:51
like a couple months ago, I just started posting and, and this is
58:55
what's happened. It just went wild and crazy and,
58:58
and exciting and, and starting to build a community.
59:00
And like, as you saw today, we're all across the world on
59:03
today, you know, from Jamaica to England to Florida and West
59:08
Virginia and Canada and, and, and I just Australia, like
59:13
amazing. So very humbled by the fact
59:16
that. So I'm humbled by that.
59:18
And, and thank you for that compliment.
59:20
That means a lot to me. I, I don't, I don't run on
59:24
compliments. I don't mind them, but I really
59:28
did just have a heart to, to share what I share.
59:31
Well, share what I can share. I can tell you what I've gone
59:33
through. I can tell you things I've
59:34
learned along the way. I can tell you that I'm hooked
59:38
up, you know, with a pretty the national organization who and
59:42
who again, you know, like a do PDI QS with with part as a
59:45
candidate and Michael say fox. I know people and and so I'll go
59:48
look for answers too. I'll go look for answers.
59:50
Davis Finney. Hey, good comment.
59:52
That's a great comment. Exactly.
59:53
Great resource. They Davis Finney foundation.
59:56
They have a resource called every victory counts.
59:58
If you're in the United States, every victory counts.
1:00:01
I recommend. It's like like a Bible.
1:00:03
It's one that you get and you put on your shelf and you can
1:00:05
always go look, you know, for symptoms and you can kind of.
1:00:09
What you're dealing with that day and go find it.
1:00:10
And and we parties of Canada does that for Canada.
1:00:14
We have the Canadian version of David Finney.
1:00:16
So great resources, things that we should always, always have.
1:00:19
So I'm thankful for that. And what's that?
1:00:21
What's that? I'm very comfortable, honestly,
1:00:23
thank you. Well, thank you.
1:00:24
That's all it. That's all I wanted just a real
1:00:26
place that we could just hang out, you know, where I could,
1:00:29
you know, I can share what I want and that's why you know,
1:00:32
and, and you guys are crazy. Thank you.
1:00:36
There's no such community in Jamaica and, and I'm so happy to
1:00:39
find this channel. Well, I'm happy to have found
1:00:41
you guys because I, I, you know, you're, you're letting me by
1:00:47
what you're doing and watching and, and sharing and liking and
1:00:50
stuff. Because when you share and like
1:00:51
the videos and big comments and stuff, YouTube shows up to more
1:00:54
people. We find more people with
1:00:56
Parkinson's that are like, Oh, I that, hey, I just found you.
1:00:59
I just found, if you look at your comments, I just found you.
1:01:01
I just found you. So, so you know, you're thanking
1:01:04
me and I'm thanking you because I love, I love doing this.
1:01:08
So I appreciate you and I, I, I appreciate you and so thank you
1:01:14
for that. So this is really cool and cool.
1:01:16
We can hang out and I hope we can do this a lot more often.
1:01:19
I hope we can even do it in different forums.
1:01:21
I know that I know even though YouTube has changed some of the
1:01:23
ways around where I think we can respond differently and, and
1:01:27
even, you know, bring you guys in for chat if you want to come
1:01:31
chat, stuff like that. So you know what, I think it's
1:01:32
growing. I think we can do some really
1:01:34
cool things and I think I'll, I'll, I'll experiment and try
1:01:37
new things that other ways that we can connect.
1:01:39
I think that would be great and it's wonderful.
1:01:42
And what have we got now? This is something in Chinese
1:01:44
here. So it's like, is that OK on the
1:01:47
tube? John Pepper insist he cured
1:01:49
Parkinson's by fast walking. So John Pepper insisted he cured
1:01:56
Parkinson by fast walking. You believe?
1:02:00
Who's to say? I don't know?
1:02:02
I'll tell you what, I if, if it, if that's what it is, if I, if,
1:02:07
if it's fast walking, then let's go, bring it on.
1:02:09
Let's go. Like I'll, I'll run right now if
1:02:11
you want me to run. So I have a little bit of hard
1:02:14
time with that. But I, who's for me to say he
1:02:18
did or didn't, You know, I'm kind of a old school when it
1:02:22
comes to that. I'm just kind of old school.
1:02:24
I just feel like kind of reality call a reality where where
1:02:28
there's reality and you know, I'll never put anybody down or
1:02:31
just call some If I don't know if I know, I know if I don't, I
1:02:33
don't and I don't. But I just know that if it just
1:02:35
took me to walk faster and that would do it for me, then holy
1:02:39
smoke man, I would line all you up right now and.
1:02:42
We would go for a fast walk. That's just my thoughts on that.
1:02:47
Thank you for posting that though.
1:02:48
I do appreciate that. Where are we going now?
1:02:51
Yeah, I'm, I'm 58 years old, but I know diagnosed 6 years.
1:02:55
Well, welcome, art. Welcome.
1:02:57
Welcome, welcome. I am 54, diagnosed at 40, so 15
1:03:00
years. But that's great.
1:03:01
Thank you. I appreciate your art.
1:03:03
You are a good person. I hope I can do this again.
1:03:05
Well, thank you, Dolores. You are great people too.
1:03:08
I think you're all amazing and wonderful and I really enjoyed
1:03:10
hanging out with you and I'm getting really tired, so I think
1:03:13
we're going to call it a day. But thank you so much for
1:03:15
joining me. This was amazing.
1:03:16
I wait a minute. OK, hold on your attitude.
1:03:19
Let me see now your attitudes really inspired me to start my
1:03:21
own channel and podcast. I'll put my first video if I had
1:03:24
a boy. All right, I love it.
1:03:25
Make sure you let me know. I think I'm your first
1:03:28
subscriber on YouTube. So I'm I'm with you.
1:03:30
I mean, we the more we can do and get the more word out there
1:03:33
we can get out there. I think that would be amazing.
1:03:36
What do we got now? I recently found your channel,
1:03:38
posted comments a couple of times.
1:03:39
I will follow and comment where I'll thank you, Deborah,
1:03:42
appreciate you. Thank you so much.
1:03:43
You guys are awesome. You're making me feel you know
1:03:46
what, I think I might have a good night's sleep tonight.
1:03:49
That's my goal, but I appreciate it.
1:03:51
I I just, you know, just know that I'm just a real I'm just a
1:03:54
real person. I'm just I'm I'm another you,
1:03:56
you know, we all have a story. We all have a story.
1:04:00
We do. And so I'm not nothing special,
1:04:03
nothing to do. I just I'm just telling my story
1:04:05
and I'm I want to maybe help tell yours too.
1:04:09
So I pretty Oh God, you guys are OK.
1:04:11
I'm going to keep going here. So I just love this.
1:04:13
Thank you. Well, thank you, MK appreciate
1:04:15
that. I think we're all different
1:04:17
symptoms and different things help some and so absolutely live
1:04:20
living in old Florida. I I totally agree with you.
1:04:23
You know what? And so that's what I mean.
1:04:25
Take what? Take what works.
1:04:27
Take what doesn't. You know, or don't take what
1:04:29
doesn't, but take what works. Or try.
1:04:31
Try it out. Maybe it doesn't.
1:04:32
Maybe it does. Maybe it doesn't.
1:04:33
What do we got now? OK, Needles.
1:04:34
Goodnight, Bryce. Till next time.
1:04:36
Goodnight. OK.
1:04:36
Goodnight. Goodnight.
1:04:37
Goodnight. You were my first subscriber,
1:04:39
and I appreciate it. Uh huh.
1:04:40
I have. Of course I was.
1:04:42
I told you. You said you're going to do it.
1:04:44
I wouldn't subscribe. That's me.
1:04:45
Oh, yeah. I'm privately subscribed.
1:04:47
Yeah, I'm a mine are private. They don't let me because I have
1:04:51
too many followers, whatever. But I have subscribed to your
1:04:54
channel. I was your first.
1:04:55
You had zero and then you had one.
1:04:56
That was me. But I'll support anybody and
1:04:58
everybody. So there you go.
1:04:59
OK, Good night, all everybody. Good night's sleep.
1:05:01
I hope you all sleep. Let's say, tell you what, if
1:05:04
you're up in the middle of night, put a comment here, say
1:05:06
they didn't make it and we'll we'll know it.
1:05:08
But anyway, thanks everybody. I appreciate you guys.
1:05:09
I love you guys and we'll see you next time.
1:05:12
Bye now.