Latest / Living with Parkinson’s | Bryce Perry / Parkinson’s and Cognitive Function: My Real-Life Brain Hacks

Transcript

Parkinson’s and Cognitive Function: My Real-Life Brain Hacks · 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. There are days that I can speak
0:32
on stage in front of hundreds of people and there are days that I
0:36
forget why I walked into my kitchen.
0:38
You know, sometimes I lose my train of thought, bit sentence
0:41
even while recording these episodes.
0:43
And sometimes you've seen them. And in those moments, I get
0:46
those, I get this wave of self doubt, like, am I still sharp
0:49
enough to do this? Well, today I'm diving into
0:52
something. People with Parkinson's don't
0:54
talk enough about cognitive function.
0:57
And I want to tell you how I personally deal with it.
0:59
The good days, the frustrating ones, and everything in between.
1:12
Well, welcome back to living with Parkinson's, the good, the
1:15
bad, and the reality. I'm Bryce.
1:16
And if you're new here, this podcast is where I talk about
1:19
the real experiences of life with Parkinson's.
1:21
Not the textbook version, the Lib version, the real version.
1:25
Well, today's episode is all about cognition, that sneaky,
1:28
exhausting, frustrating side of Parkinson's that doesn't always
1:31
show up on the outside, but it hits hard on the inside.
1:36
You know, we talk a lot about tremors, movement and meds, but
1:41
the mental side of Parkinson's is just as real.
1:43
For me, it started very subtly. I'd lose my train of thought in
1:47
conversations. At first, I blamed it on stress,
1:49
right? And then one day, I completely
1:51
forgot the name of someone that I worked with for years and they
1:54
were standing right in front of me.
1:57
It wasn't just awkward, it was scary.
1:59
And that was the first time that I truly felt like Parkinson's
2:02
wasn't just in my limbs, it was in my brain.
2:06
So how do you, how does cognitive change show up in my
2:08
daily life? Well, I'll give you a couple
2:11
examples or a couple stories. There was this one time I had
2:13
this live Zoom panel that I was hosting, You know, one night I
2:17
prepped for all week and then right before I went live, I
2:21
completely blanked on my intro. I sat there smiling, nodding,
2:24
and inside I was scrambling to remember my own script.
2:28
I recovered, but my confidence, it took a hit, right it.
2:34
It took a hit and that that hit stuck with me for days.
2:39
Or when I spend 20 minutes looking for my keys only to find
2:41
them in the fridge next to the happy eaten yogurt and that
2:44
isn't true story. These moments mess with my
2:47
confidence and they make me question the my ability to
2:50
function and they make me question your identity sometime.
2:53
Can you relate? Have you been there?
2:54
If so, let me know in the comments.
2:56
How do you read them all? So I want to talk to you today
3:00
about what I do about it because this is very, very important.
3:02
And I want you that if you're going through these struggles,
3:05
you know, to really, really get these down.
3:07
I'm going to give you a few points.
3:08
Write them down if you have to, or save this video.
3:09
And always, you know, you can come back to it and watch it.
3:12
But there's a few steps that I do, a few things I do to try to
3:17
maintain this, try to make it better, right?
3:19
So the first thing I do is I train my brain and I train it
3:23
intentionally. So every morning I do about 10
3:26
to 15 minutes of what I call brain work, right?
3:29
And not complicated, just, you know, word puzzles, memory games
3:33
or journaling Sudoku. I like to, I like elevate and
3:37
peak. And I keep a journal just
3:40
writing about my day, even if it's just a few sentences or
3:43
two. And I'll be honest, I've heard
3:45
my hungry days. I always heard about journaling,
3:47
and journaling is not my thing or wasn't my thing, but I find
3:51
it a little cathartic to just write down a few things about my
3:53
days. Good things, bad things, things
3:55
I want to do, things I want to dream about, things that I'm
3:57
dreaming about 5 or 10 years from now.
3:59
I keep them upfront, upfront and centered in my life.
4:02
So I feel like if you write them down, they're more real, right?
4:05
It's not just saying that you say something that is poof, it
4:08
goes away, you know? But if you write it down, I went
4:11
poof and I think I threw something in my contact really
4:14
crazy. Anyway, I write it down and it
4:17
just it makes it more real, more visible and it's there so crazy
4:22
anyway. And it doesn't have to be long.
4:23
I don't sit there writing out a whole story or paragraph.
4:26
One paragraph. It can.
4:27
Some of mine is a sentence or two and some of mine are just
4:30
even a word like not into it today.
4:32
That's true. I have a couple journal journal
4:34
entries that say not into it today.
4:37
And then I just know it was must have been a bad day anyway, But
4:40
there was a stretch last year where I noticed that my word
4:42
recall started dropping. I couldn't find the right words
4:45
mid podcast, mid sentence, mid anything.
4:48
And you've seen that and I've said that on a few videos in the
4:51
past where I've said, hey, and I and I got to the point.
4:53
I used to edit it all the time. I used to edit them right out.
4:56
I forget something. I'd edit it and I wouldn't start
4:58
recording until I remembered it. And I'm like, Oh my gosh, of
5:00
course you dummy, let's go back and re record that.
5:04
But now I leave them in because, you know, I'm just want to be
5:07
real with you, right? This isn't some, you know, I've
5:10
played around with this studio and try to make it nice and
5:12
pretty and everything else and, and cool.
5:14
Hopefully I'm, you know, maybe it looks cool.
5:16
I don't know. I just played with this with my,
5:18
I kind of find it fun. It's a bit of a creative side of
5:20
me and it makes it, it kind of makes my day.
5:23
But I'm not a professional when it comes to this.
5:26
So I'm trying to, I'm sitting here saying, you know, I just
5:28
want to relate. I want you to relate with me.
5:30
I want to relate with you. So why don't this be real?
5:33
So if I forget something, I just tell you, I forget it.
5:35
And it's great because I love when in the comments, you know,
5:37
everybody, you know, puts it in there, Hey, this is the word
5:39
you're thinking of. And I really do like that.
5:41
It's, it's some people said to me, I, I say, someone said to me
5:44
the other day about the comments, like you really like
5:47
when people are telling you what you said wrong or what you, what
5:51
word you missed and, and you're going like, Hey, cool, thanks.
5:54
They're going like, doesn't that make you upset or like,
5:57
whatever. I'm like, no, I like it.
5:58
It's shows that people are listening and, and watching and,
6:02
and wanting to be a part of what we're doing here.
6:04
So that word recall, though, was really, really tough, right?
6:08
And, and it is tough. So here's something I'd do to
6:13
try to help with that. OK, so I start, I start running
6:16
down 3 new words a week and I'm and I'm using them in casual
6:21
conversations and it's actually helping.
6:23
I'm just grabbing 3 words, brand new words and I'm concentrating
6:26
on them. I'm like, oh, that's a really
6:28
cool word. And what does that mean?
6:29
And I go through it and I look at it and then I try to slip it
6:32
into a conversation. I try to use it again.
6:34
So I'm forcing my memory to do it.
6:36
Memories. Your memory is like a muscle,
6:37
right? And the more you exercise that
6:39
muscle, the stronger it's going to be and the longer it's going
6:41
to last. So exercise that muscle, that
6:44
memory recall muscle, exercise it purposely, purposely write
6:48
down things to remember and keep remembering.
6:51
And it's starting to help. It really is.
6:53
And that that's, that's the first one.
6:55
Number two, I use repetition as a form of kindness to my brain.
7:00
You know, my days follow a rhythm, right?
7:03
I wake, I wait to the video, but that I wake and I wait for
7:08
events to kick in, but I stretch, I eat, I rest, and I
7:11
repeat. Routines used used to feel like
7:14
cages to me and now they feel like a safety net.
7:17
I was always that person. I hate routine.
7:19
I want to just be open and go with the flow and do my own
7:22
thing. And to a degree I do.
7:24
But I also put those those those boundaries in place, those
7:27
routines in place, those repetitive routines to keep my
7:31
brain fine. Like I know what comes next.
7:32
I know what comes next. I know what comes next.
7:35
I remember. I remember once I was trying to
7:37
switch up my daily schedule to stay that spontaneous type, and
7:42
that lasted for about two days. I ended up missing my afternoon
7:44
dose of pills and crashing on a Zoom call.
7:47
It was crazy. So I've learned to structure,
7:52
like, sorry, I've learned that structure is my friend, OK, is
7:57
my friends. But again, I loosely structure.
7:59
So I structure to a point that the things that are really
8:01
important and I have to remember no matter what are in my
8:04
routine. And I still allow some wiggle
8:06
room to Bryce to be Bryce. And some people like that.
8:09
And people close to me sometimes don't like that, but that's OK,
8:14
you know? And then lifestyle choices,
8:16
lifestyle choices that make a difference.
8:18
That's a really big part of this.
8:19
Like here's what else. Here's some of the things that
8:23
mentally OK, keep my mental. What am I trying to say?
8:29
Here's what else helps me stay mentally sharp, right.
8:32
So it's not so memory. Do the brain exercise, the brain
8:35
memory recall word recall. But then you have to eat well,
8:39
Hey, and I'm not talking about being a nutrition a nutrition
8:42
St. I love dessert.
8:44
I love ice cream actually, but I make an effort to eat leafy
8:47
greens, fish, blueberries and brain food and I make an effort.
8:50
Like I said, sometimes I'm not good at it, but I don't watch
8:53
myself like a raised, you know, crazy calorie person or or diet
9:00
person or nutrition person. But I really to make an effort
9:03
to make sure I get those greens and I really make an effort to
9:05
make sure that I'm eating things that are feeding me right, not
9:08
just I'm not just eating to live.
9:10
I'm sorry. I don't want to just eat to
9:12
live. I want to live to eat right.
9:13
Does that make sense? And so when I started to shift
9:16
my diet a bit, I actually noticed fewer crashes.
9:19
Karma would even comment. You seem clearer lately.
9:21
And I'll take that. I really will.
9:24
Then you have to prioritize your sleep, right?
9:27
And we've talked a lot about sleep and we all struggle with
9:29
sleep. So again, you need to prioritize
9:31
it though. I used to treat sleep like it
9:33
was a luxury, right? And now I treat it like it's a
9:35
medicine, like it's prescribed medicine.
9:38
There was a week I tried pushing through on five hours of sleep
9:41
and that's a normal week. If I can get four or five hours,
9:43
it's, it's good, right? There's some nights that I get 0
9:47
like you and and whatnot. But again, I'm trying those
9:49
hacks and you know, again, if you looking for some of my
9:52
little hacks, I have like my magnesium spray on my feet and
9:56
and whatnot. They're always in the
9:57
description below and you can always go and see what's some of
9:59
the things I use that are making my life easier and better.
10:02
But there's a lot of times I try pushing through on this low
10:06
sleep days, But when I don't sleep that many hours, matter of
10:10
fact, I'll tell you something. Last night I slept like 8 hours.
10:12
Holy moly. It was like I woke up this
10:14
morning like feeling alive and revived and and I've been going
10:17
through a stretch of of not feeling that well and been just
10:20
a crazy time for me. So 1 and I and the night before
10:23
I didn't sleep. So last night I got 8 hours of
10:25
sleep. And when I get that right, I'm
10:28
less foggy, I'm less irritable, and my brain is just not lagging
10:33
like it used to or does on days that I've that I've not slept
10:36
well. So I have to, I'm learning, I'm
10:38
trying, I'm trying, I want you to try along with me.
10:41
I'm trying to protect those 7-8 hours right?
10:43
Like my life depends on it because in a way, it really
10:46
does. What else can we do?
10:49
One of the things that I also do is I've had to try to reduce my
10:52
stress. Meditation isn't about lighting
10:55
candles and chanting. For me, it's about 5 minutes of
10:58
silence with my eyes closed and my phone away, phone away.
11:04
Big point. The reset helps, right?
11:07
So does some people pray, some people just do deep breathing
11:09
before big conversations and meetings and and some people do
11:12
a lot of other things. But whatever it is for you that
11:14
actually gets your brain just to settle down, right?
11:17
Just gets it to settle down and relax and live in the moment.
11:20
You know, that's one thing that when you're really stressed out,
11:23
there's a lot of times, you know, it's a lot about future
11:26
fears, right? So try to be trying to live in
11:30
the moment. And you know, I've said this
11:32
before, my mentor that I had at one point, he always said
11:34
wherever you are, just be there, right?
11:36
So if I'm in a moment and I'm having a conversation with Billy
11:40
and I'm having you and Billy are talking, I don't want to be
11:42
thinking about tomorrow or I don't want to be things of what
11:45
I forgot yesterday. I want to be thinking about am I
11:48
going to have a tremor soon? What time to take my meds?
11:49
I want to just try to be with Billy and re focused on him and
11:52
have a good conversation. And so wherever you are, be
11:56
there. And so remind yourself that
11:58
wherever you are, be there. And so that these type of things
12:01
in these moments of 5 minutes of just to myself, eyes closed,
12:05
meditation, taking good thoughts, they really help.
12:08
They really, really do. All right, what else do I do?
12:12
OK, ready for this? Social interaction equals mental
12:17
fuel. OK, something people you totally
12:20
misunder. Underestimate this conversation
12:24
is cognitive exercise. Whether I'm recording this
12:27
podcast or I'm chatting with a friend or talking to someone
12:29
who's newly diagnosed, it keeps my mind active.
12:32
Some of my sharpest thinking actually happens during inner
12:35
circle calls. Hearing other people's stories.
12:37
They forced me to listen, to reflect and respond.
12:40
And that, my friend, is a full mental workout.
12:43
It really is. And some of you might say, what
12:45
is the inner circle? Well, I'm glad you asked.
12:47
We're actually a couple days away here.
12:50
It's coming up this next week where I have this like my own
12:52
personal support group. It's a, it's a zoom.
12:56
It's like a zoom call, right? And where we go deeper, we, we
12:59
ask questions, we talk, I talk about my life and people ask me
13:02
questions. I can help with theirs.
13:04
And it's just a, it's a real group.
13:06
It's a group that's growing together to go further, right?
13:08
And that's what I call the inner circle.
13:10
And if you want to be a part of that and you know, get in right
13:13
away because you know, Zoom links are going up, you don't
13:16
want to miss it. It's fun, it's really
13:18
reflective. And it's your time to really you
13:20
and I to go a little deeper and get, you know, get to know each
13:22
other a little bit better. And hopefully I can help you in
13:25
this walk and you can help me in my walk.
13:27
It's all about doing life and doing it life today and doing
13:30
life today together. So anyway, the link is in the
13:34
description below. It's also you can just join
13:35
button, I think right on this video.
13:37
Join it now and join me and it is going to be a blast.
13:41
OK, some other things. It's tool tech hacks, right?
13:46
Gotta get the tools. I got tools and links and
13:49
descriptions. But one of the things that I
13:52
also use too religiously is a calendar, right?
13:55
Whether it's a Google Calendar or your calendar, your phone or
13:57
whatever calendar you use, you need to use a calendar.
14:01
You know they say if you don't schedule your day, your day will
14:03
schedule you. And if I don't schedule in my
14:06
meds, I don't schedule in my things that I want to need to
14:08
get done. I don't, I actually schedule in
14:10
my 5 minutes of mental rest, my 15 minutes of exercise, whatever
14:15
it is I have to put in my calendar.
14:17
Because if it's not in your calendar, you won't respect
14:18
that. And it's easy to change and not
14:21
do it. So make sure you use a calendar.
14:23
It's whether it's an app or on your, whatever you use, use it
14:27
voice memos. There's another tech tap I or
14:29
tech tap, tap tech tech tap that I use.
14:33
I now record voice memos. I record ideas because guess
14:37
what? I don't trust myself to
14:39
remember. And that stinks because I'm
14:41
telling you, you probably, I probably had the next 10
14:44
greatest podcast topics in the entire world the other night
14:51
when I was lying in bed and when I cursed, I woke in the morning.
14:54
I can't remember one of them. So maybe this was one of them.
14:55
Maybe it wasn't. I'm not sure, but we'll see.
14:58
So I start doing these voice memos on my phone.
14:59
It's just a quick thing, click, blah, blah, blah, blah, hang it
15:02
up. And then I take, I schedule my
15:04
calendar the next day to always, I have like, you know, listen to
15:07
your voice memos from yesterday, whether it's be 5 minutes and I
15:11
go through them and, and that's what I'm starting to learn for
15:14
myself. And then the other thing I've
15:15
done is I put I spent a little bit of money, but I invested in
15:20
Alexa, right? So I've got these little
15:23
Alexa's, what do you call them Alexa Echo dots?
15:28
I think they're called all all around the the house.
15:31
And I can tell her to remind me to take my meds to prep dinner.
15:34
I can tell her remind me to take, oh, actually every
15:38
Tuesday, 6:00 it says and it take the bins out, which means
15:41
take the garbage out. So I put in a routine into my
15:45
into Alexa and I write, you know, all the tasks I know
15:48
whether they're weekly or daily or even monthly.
15:51
And that's every round in the house.
15:52
When that time comes, I get a reminder.
15:55
And it's amazing because I can't tell you how many times Alexa
15:59
has saved me from not taking the garbage out because I'm just
16:02
like I'm scaling down. It's 8:00 at night on a Tuesday
16:05
or because I have it twice, 6:00 and 8:00.
16:07
So 6:00, sometimes I'm eating and I'm not ready to take it out
16:10
and 8:00 hits again, take the take the garbage out, Bryce.
16:13
All right, boom. And I'm up and I'm taking it
16:15
out. So that's been a great hack for
16:17
me as well, especially like my second brain, It really is.
16:23
And I can tell her, remind me to take my meds.
16:24
So again, three hours I can say, hey, Alexa, remind me to take my
16:27
meds in two hours, right? And it's like boom, gotcha.
16:30
And it's amazing. So and it doesn't be Lex, it can
16:33
be Google. I think there's Google Home does
16:34
it as well. So whatever tools might work
16:37
there. Trust me, it really works.
16:40
And when I travel, I have a checklist saved on my phone.
16:44
Usually my wife actually starts the checklist and saves the note
16:47
with me and it's just a checklist.
16:49
So after forgetting my meds once on a short trip, I will never do
16:53
that again. So do I put my meds as a
16:55
reminder? Yeah, I do.
16:57
And you might be saying who could forget their meds?
17:00
This guy, and may probably you sometime or or maybe in the
17:04
future. But it's just so important.
17:07
So make sure you do that for sure.
17:09
All right, what else do I do? Well, another thing that we need
17:12
to do is this. I've done a couple of cognitive
17:16
assessments, right, not because I was panicking, but I but
17:19
because I wanted to know where I stood.
17:21
I wanted to baseline myself. It helped me adapt.
17:23
It helps me to adapt better. It's really that's the way my
17:26
brain works. But I also have talked to a
17:28
mentor at or you know, someone who's, you know, could be a
17:32
counselor, could be a but mine, I call mine a mentor and you
17:35
know, I talk to them And sometimes the you know, when I
17:39
talk, it's it's life can get overwhelming.
17:42
So I need someone to blow that steam off with or somebody to to
17:46
get frustrated with because I am Mr. Positive.
17:48
Trust me, I'm I'm the glass half full guy all the time.
17:52
But there are days that that aren't great.
17:53
And I find it easier to have somebody a go to person, right,
17:57
Whether it be a mentor or better be a a good person, a good
18:00
friend or but it has to be somebody who's going through
18:03
Parkinson's or because, because who gets you better than someone
18:07
who's going through Parkinson's? I really think that that when
18:10
people say they understand is if, if, if you don't have
18:13
Parkinson's, I don't really think you can really.
18:17
So, you know, you make sure it's somebody with Parkinson's and,
18:19
and someone you can just like rant on and they're not going to
18:22
judge you and they're not going to scold you and they're not
18:25
going to like also placate you. Like it's going to be OK, I get
18:28
it, I get it. No, no, it's just something that
18:29
just lets me do my thing. Let's me rant.
18:31
And then when we're done, we're like, hey, are we done?
18:32
Are we good? Boom, let's get over this.
18:34
Let's get going. OK?
18:37
It's, it's like, I don't know, I kind of say this, right?
18:41
But like sometimes the fog isn't from dopamine.
18:46
It's just from being overwhelmed.
18:49
You know, that brain fog that, you know, I blame it on
18:52
Parkinson's that we do. And it is a, it is, you know,
18:55
part of it. But sometimes being overwhelmed
18:58
in life translates to brain frog.
19:01
So get that out and make sure you have an outlet for that for
19:04
sure. But if you feel like your brain
19:07
is betraying you, that that's when that's the time to talk to
19:10
someone. It doesn't mean something's
19:11
wrong with you. It means that you're paying
19:13
attention. And that's very powerful.
19:16
And yeah, you know what? I this stuff is hard.
19:19
It really is. It's embarrassing when you
19:21
forget your names of somebody or you stumble on words or you zone
19:25
out in the middle of conversation or you freeze and
19:27
everybody's looking at you. But I've learned this.
19:30
OK, That's really important. I may lose track of thoughts, I
19:34
haven't lost myself, I may need more tools, but I still have
19:38
more to give. There's humor, there's strength,
19:40
and there's humanity in navigating brain fog with grace.
19:45
There really is. So that's how I approach
19:48
cognitive to the cognitive side of Parkinson's.
19:50
It's not perfect, but it's working.
19:53
And if you got your own brain hacks or routines or a story, I
19:57
want to hear about it, drop in the comments.
19:58
Let's build a brain trust together.
20:01
And again, if you want to go deeper, join the inner circle.
20:03
That's where we have those real off script conversations, live
20:06
Zoom support ideas and lots of laughs.
20:08
And the link is below to join. So thanks for listening or
20:11
watching. Thanks for staying sharp even
20:14
when it's hard. And thanks for doing life today.
20:19
Parkinson's may be part of your life, but it doesn't get to
20:22
define it. Thanks for listening to Living
20:25
with Parkinson's, the good, the bad, and the reality.
20:29
If this episode moved you, helped you, or reminded you
20:32
you're not alone. Share it with someone who needs
20:35
to hear it. Want to go deeper?
20:37
The Inner Circle is waiting. Monthly Zoom calls, 24/7
20:41
community, and a Direct Line to Bryce.
20:43
You'll find the link in the show notes.
20:45
Until next time, keep showing up and keep doing life today.