Latest / Unbalanced with Cerys Davage / 71. Finding the 'bright spots' (ft. Fred Graves)

Transcript

71. Finding the 'bright spots' (ft. Fred Graves) · Unbalanced with Cerys Davage

0:10
Hello everyone, welcome back to another episode of Unbalanced
0:13
with Me, Kerris Davidge. How are we all?
0:16
I'm really excited because today I'm bringing back an old friend,
0:20
but not necessarily a friend because I haven't had a chance
0:24
to speak to him properly. I met him at the LGMD Conference
0:27
2025 back in July in Orlando, but we only met on the final
0:33
day. And I wish I'd met him sooner
0:35
because he was one cool dude when I met him.
0:38
So I'm really excited to actually get into a deep
0:41
conversation without kind of being passing ships.
0:45
So, Fred, hi, welcome to Imbalance.
0:47
Hello, thank you Karis for having me.
0:49
It's been a while since the conference now, but yeah, I'm,
0:53
I'm sure we'll get into talking about it.
0:54
But first let's get to know you. Where are you from and what do
0:57
you do? I'm from Hartford, CT in the US
1:01
and right now I'm kind of like in between careers for the last
1:08
10 years, I was a dispatcher for our state police here in
1:12
Connecticut and I was doing 911 and emergency calls.
1:15
And that was a job that was I was probably hanging on after a
1:19
while. It just was so hard to do with
1:21
my conditioning. And so I left that job out
1:25
pursuing IT. OK, yes, yes, like some we call
1:31
it like cyber security courses and stuff like that.
1:34
So wow, advocacy stuff as well so.
1:37
OK, cool. That's a bit different from what
1:39
you were doing, like how you adjusting to that change?
1:42
Well, you know, I find that it, it's technological in its sense
1:46
anyway. So it's in everything nowadays.
1:49
So it's just like, it's an adjustment.
1:51
But I, I, I enjoy it. And I think that's kind of like
1:54
the thing where I don't feel that stress of like, can I do
1:58
this? One thing this condition has
2:00
taught me is that you have to be changeable.
2:02
You have to be able to pivot with this kind of get a little
2:05
hard. So right now, that's where we
2:08
are. And so you have LGMD, which is
2:10
obviously how we met. What's your type?
2:13
Tell us a bit about how you were diagnosed.
2:15
OK, right now I am well for the last 10 years I've been
2:19
diagnosed with LGMD Type 2A. Initially I was diagnosed with
2:26
Becker's muscular distress. I was diagnosed probably, Oh my
2:30
goodness, late 90s like 98. I was a teenager.
2:35
I have broken my leg and after when he was getting my cast off
2:39
the stuff you just don't seem strong enough like something's
2:42
wrong. And my journey.
2:44
I have muscle biopsies. I've had two muscle biopsies and
2:48
then Fast forward to 2010 ish that's when I kind of like got
2:55
the DNA test and that's when I knew exactly what I had and I
3:00
was re diagnosed with limb girdle two way.
3:04
Wow. OK, so for a while you were
3:06
going about life thinking you had the correct diagnosis, but
3:10
it wasn't. How did you relate to the
3:12
symptoms of the Backers disease? Were you thinking?
3:15
Were you thinking that something wasn't adding up?
3:18
You know, I mean, I was so young when I was diagnosed.
3:21
So it, it was scary, honestly, you know, and, and it 'cause it
3:25
wasn't a lot of information out either back then.
3:27
So you read, you read this stuff online and it was just like, Oh
3:31
my goodness. Like, I don't know, I guess I, I
3:33
had like a little doomsday kind of thing with, with, with
3:35
Becker's at that time, 'cause I was just like, Oh my God, I'm
3:38
just waiting for me to be in my wheelchair.
3:40
I'm waiting for me to not be able to do this and that and
3:44
maybe I'll die, you know, and I and I just started like being
3:47
that way, you know, and, and it kind of just led me to this path
3:50
where I kind of like gave up on myself for a while.
3:54
If I'm being honest. I just kind of just was waiting
3:57
for the bad that, you know, just like waiting for that.
3:59
What do they say? Waiting for the other shoe to
4:01
fall, you know, like waiting for something bad.
4:03
So for me, I, I want to say the rediagnosis kind of was like,
4:09
oh, wait, you know, I can do more.
4:12
I don't have to do this. And not, not to say.
4:14
And now that I've been more educated on muscular dystrophy,
4:18
even Beckers, you know, people with Beckers can live a great
4:20
life. But like at that time, being 13
4:23
years old and just seeing the bullet points of it all, it is
4:28
frightening, you know, so. Yeah, I'm sure that was tough
4:31
for you. Like just adjusting to that as
4:34
well as trying to fit in and being a teenager anyway.
4:37
Like being a teenager is tough, but on top of having a diagnosis
4:41
or something that you're trying to understand, but when you
4:43
Google it, it just basically just says death like.
4:46
Right. Never Google your condition.
4:49
Oh, for real. And at that age, all you want to
4:51
do is be normal. You know, you don't, you don't
4:53
want to stand out. You don't want to be like, oh,
4:56
you know, my unique abilities. You're just like, I just want to
4:59
blend in and be like everyone else.
5:00
And you can't. Yeah.
5:04
How did you find like school and going to high school and things
5:08
like that, like with your condition alongside it, with
5:11
your symptoms? It's funny, when I was in high
5:16
school, that's when it kind of my, my symptoms started to
5:19
really show. And like for the first few
5:22
years, I being like, I'm a tall guy.
5:25
I kind of like, did the whole, oh, I have a basketball injury,
5:30
you know, I played the game for a while as long as I could and
5:35
yeah, no, Oh my gosh. I mean, and I would just play it
5:38
up, you know, I don't know. I just, you know, I just hurt
5:40
myself. But over time, it's just like, I
5:44
think I overcompensated with trying to be the life of the
5:47
party or, you know, the funny guy or, you know, anything that
5:51
take focus off of why do you walk funny?
5:53
Why are you why are you in that scooter?
5:56
You know, I mean, because it developed all through, you know,
5:58
school. Like first I was just walking on
6:00
my toes, you know, the the waddle walk, you know, and then
6:04
and then I'm like unstable and falling and people are like, why
6:07
did you fall? You know, you can't really
6:09
explain. Then I got my scooter, the green
6:11
machine. I had this like, you know, like
6:13
the ones that you have at the shopping, you know, having cart
6:16
one. Wait with a little basket at the
6:18
front stop. I love that I want one.
6:23
They are awesome at the four Wheeler one.
6:25
It was so fun. I thought people were jealous.
6:29
Surely people were jealous. What eventually I made the most
6:33
of it. Like, I mean, I become I went to
6:34
a Catholic school. So I have the the girl sitting
6:37
on my lap and I'm coming now with my scooter, you know, and
6:42
eventually, you know, I graduated and I got prom king
6:45
and all those kind of things. And you know, I was very
6:47
virtual, so. That's so cool.
6:49
Yeah, yeah, School was alright for me.
6:51
School, I, it was a small community.
6:52
So once my friends found out and, and I kind of just got to
6:56
the point where I just kept it real.
6:58
They embraced me and showed me love and the fears were within
7:01
me. It wasn't the people, the
7:03
community. That's so good, that's so good
7:06
to hear, 'cause something that could easily set you apart from
7:09
everyone else at school just brought together a community and
7:14
brought your friends to support you and for you to be able to
7:17
trust them and count on them no matter what.
7:19
That's just, that's so good to hear.
7:21
I'm prong King, so deserved. You know what I'm saying?
7:23
Thank you. OK, so then you got your When
7:27
did you get your LGMD diagnosis again?
7:29
This was in college. This was like after 2000, about
7:33
2008 or 9. Walk us through that.
7:36
Like what? What was that like kind of going
7:39
through that? It at that point I just was like
7:44
what? You know, it was, it was, it was
7:47
just like, 'cause, you know, I mean, I don't know how you're
7:49
diagnosed with the diagnosis process was, but when I was
7:53
first diagnosed, it was like, they kind of just told you to
7:56
stop doing all activities, don't do any exercising, don't work
8:01
out. Just like, just be safe and
8:03
don't hurt yourself. And yeah, I kind of bought into
8:06
that, right? And then you mix that with some
8:08
depression and it's like you're gaining weight and you're doing
8:10
all these different things and you're losing abilities.
8:13
You know, if you don't use it, you'd lose it.
8:14
So I was kind of pissed, I'm not gonna lie.
8:16
Like I was so pissed. I was like, so wait, I could
8:20
have walked longer. I could have pushed myself, You
8:22
know, especially going to conference, seeing everybody who
8:25
can kind of like still, you know, there's still ambulatory,
8:28
whether I mean, whether they're using a Walker or a scooter or
8:32
something like that, but there's still a lot of ambulatory people
8:34
in the LG and D community. And I think that comes with
8:39
people who are diagnosed later on having that information of do
8:42
what you can, but pace yourself. You know, that was not the
8:46
message when I got that Becker's diagnosis, you know, at all.
8:49
I would say that's probably the most that I, I have some sort of
8:52
like response to like or anger that was just like what you
8:57
know. Yeah.
8:58
I mean, that is tough in one way, like seeing other people
9:02
and being like, maybe I would have still been at that point if
9:05
I'd done more. I mean, it's so easy to beat
9:07
yourself up for that. But first of all, you didn't
9:10
know. And second of all, you don't
9:11
know if that would have changed much because everyone's
9:13
progression is so different. And I guess I try not to think
9:18
about like, changing the past because you can't.
9:21
But that was the advice I was given.
9:23
Like don't do weights. Like don't do anything in the
9:26
gym, like don't do cross country in school because you will like
9:30
collapse basically. So I just had to sit all these
9:33
exercises out rather than have like an alternative.
9:36
I had to just sit on the sidelines and watch everyone
9:39
else do it and completely miss out altogether.
9:42
And now I know that a bit of exercise is good.
9:45
Like I do use my weights, but I use ones that I know I can deal
9:49
with that are very kind of low intensity and there is like a
9:55
middle ground. But I don't think we were aware
9:58
of that. All the doctors were aware of
9:59
that when we got diagnosed back in the 2000s.
10:03
Right, right. So I mean, that's probably one
10:06
of the biggest things that I'm just like learning to give
10:10
myself grace, right? Like you said, like you don't
10:12
hold yourself accountable for what you didn't know.
10:15
So that that's hardest things, especially being a parent
10:19
because it's like, oh, I wish I could, you know, run around with
10:22
my little son and all that kind of stuff.
10:23
So it's yeah, but yeah. Yeah, how are you finding being
10:28
a parent? Oh my goodness.
10:31
It's crazy because first of all, it's beautiful.
10:34
I really, I mean, I enjoy it to see him grow and you know, it's
10:40
just, it's awesome, you know, to see that little version of you.
10:45
There's a the things in your face that muscular dystrophy
10:48
kind of takes away, right? But there's little things like
10:51
there's like parenting things that you aren't aware of until
10:55
you cross that bridge. And like sometimes now I'm just
10:58
like, geez. Or like, you know, like
11:01
yesterday, one of his little friends, he was on FaceTime with
11:03
one of his friends and she goes, your dad's in a wheelchair.
11:07
And he's like, he's like, yeah, my dad has muscular dystrophy.
11:11
And over time, it makes him weaker.
11:13
And it's just like to see him have to be able to grow into
11:16
that. And he, and it warmed my heart
11:17
so much that he could even articulate that at 8 years old.
11:21
But then at the same time, it's like, Dang, you know, it's like
11:24
gift and a curse. I think it's just like the whole
11:25
thing. It's just like to watch that
11:27
resilience and strength of him is beautiful.
11:29
But then at the same time, it's like to watch someone have to
11:32
use their resilience and strength.
11:34
It's tough, Yeah. You know.
11:37
That's so mature though, like he's going to grow to just be a
11:41
lot more mindful to be aware of like barriers that people
11:44
wouldn't even think of unless they knew someone with a
11:47
disability. And also just like just the
11:50
mental like maturity, you know, like he's, he's already a step
11:55
ahead of other people because he's got that lived experience
11:58
to go off, you know, I. Appreciate that.
12:00
That's so sweet. The conference was so important
12:02
to me, too, because in our world, you know, with having
12:05
such a rare disease, you don't get to touch and see people that
12:09
much, you know? And he started in his head
12:14
developing like my dad's in the wheelchair, my dad has muscular
12:18
dystrophy. But like he doesn't see other
12:19
people that deal with it, you know, So going to conference was
12:23
so important for me. So he could see other parents
12:26
that have MD. He saw kids who have it, he saw
12:30
siblings who have it, you know, So it's like he understands now
12:34
that it's bigger than just us. And it's not something where
12:37
it's that he's going through. It's like it's us, you know,
12:41
it's a community. And honestly, that's been the
12:43
game changer for me. Community, you know, knowing you
12:47
meeting everyone else, you know, it's, it makes something that I
12:50
it's something that I get when I get my MB ambassador talks.
12:54
I, I always talk about the concept of the bright spot,
12:58
right when I work for the state troopers.
13:00
I used to deal with a lot of troopers who were detectives who
13:03
dealt with bad things. And there was a trooper who, who
13:06
was the head of Sandy, the Sandy Hook tragedy.
13:10
And he was, I mean, you would you would never think that this
13:13
guy dealt with such hard things, right?
13:16
He was just so smiley and fun. And one day he and I worked
13:20
together and I was just like, how do you, how do you stay so
13:23
positive? It's like the bright spots,
13:26
Freddy. And I was like, what are you in
13:27
the bright spots? He's like, well, you know,
13:30
obviously the bad thing happened.
13:31
He said, but I got to connect two mothers that were grieving
13:34
today. I got to, you know, and it's
13:36
like he went down a list of all these positive things that he
13:39
did within this negative thing. And I hold that dear to me at
13:44
this point in my life. You know the bright spots.
13:47
Wow, that's incredible. And it's, it takes a lot to get
13:51
to that point where you can stay positive about just things in
13:54
life. But yeah, as much as there are,
13:57
there are bad things in life. There's always, always something
13:59
good and you just got to look for it.
14:02
Sometimes you got to look really hard for it.
14:05
Yeah, some days more than others, definitely.
14:08
Wow, that's so sweet. Thank you for sharing that
14:11
anyway, I mean, I'm not a parent yet.
14:15
We'll see. But it's always nice to see like
14:18
people with LGMD as parents because another, well, it wasn't
14:22
necessarily advice, but after meeting a few people with LGMD,
14:26
they've been like, I'm not like having kids.
14:29
I'm not going to like I won't be able to.
14:31
And then I've met parents that have LGMD and I'm like, OK,
14:34
well, this is possible. You just got to adapt in your
14:37
own way, you know? You want to hear something
14:40
crazy? I mean you talk about the signs
14:43
when we met my son's mom and I, we met our OB and her husband
14:48
has muscular dystrophy and it was like random.
14:52
He doesn't have LGMD but he has, he has MD.
14:54
And she was like, you know, we have 4 kids and they're all,
14:58
they don't have MD and she's just like, you know, it's going
15:00
to be harder some days but you can do it.
15:02
And it was just like, oh, it was just like this sign telling me
15:06
like, yo, it's going to be all right, dude.
15:09
Wow, isn't that so? Crazy.
15:10
Yeah. And it just makes such a
15:12
difference, even just knowing of one other person, whether it's
15:16
like, OK, well, I'm not in this alone in this world.
15:19
Yeah. Wow.
15:21
So how did you find the conference?
15:23
Was this the first one you went to?
15:24
This was the second one. It was great, honestly.
15:27
That's why I came back. I mean, I'm kind of still, you
15:30
know, you're still coming down from the high.
15:31
It's like being around so many people who who deal with life
15:36
just that as it, I mean, it's such a major piece of our lives,
15:39
right, And meeting people who deal with it and like it, it
15:42
just is so encouraging. It kind of like fuels my it just
15:47
fuels me for the next however long, you know, after, I don't
15:52
know, it's a hard feeling to describe, but it gave me a
15:54
feeling of connection that I hadn't felt in so long.
15:58
And that's why I made a point like I'm going to that
16:00
conference every chance I get. I'm not going to lie to you.
16:04
It was great. It was great.
16:06
And like this year, because I brought my son, I didn't get to
16:08
interact with the workshops as much as I did the first time.
16:12
But you know, just like I said, the showing him the other
16:16
families in the community, it was it was still great.
16:19
It was still great. Yeah, and that's going to be
16:22
really important to him, just to see that representation and
16:26
maybe for it to just feel a bit more normal.
16:28
I. Guess yes.
16:29
Yeah, I honestly felt the same kind of high after leaving the
16:33
conference. I thought it would be a one off
16:35
because I'm from the UK so I can't really get there as easily
16:39
as most people that go. But I honestly just loved it so
16:43
much because when you're in this world, you you're a minority,
16:48
right? And when you're in these
16:50
conferences, there's more of us and less of them in the outside
16:54
world. And it's like, I'm not the
16:56
minority anymore. Like I can see everyone else
16:58
here walks like me or has my ability aids like me.
17:02
And it's just like such a safe space.
17:03
And it kind of fuels me to go back into the world.
17:06
Like, OK, at least I know that I'm not the only one going
17:09
through this, you know? Yes, absolutely.
17:12
I'll say this like from being in the US and and growing up and
17:17
the quote unquote hood, right, you know, like my knowledge of
17:20
disabled people was just like, you're poor, you know, you
17:23
struggle, you know, and you just see those guys like in your
17:27
neighbourhood. That's like broken down and like
17:29
it was so invigorating and inspiring to see people like
17:34
yourself, You know, who works in media, There's people who were
17:37
therapists and, and all of us are have the same condition, but
17:41
are living a life, you know, and sometimes you can just be in
17:45
your own world and you think like this is my truth, because
17:49
this is the truth, right? But now it's just like, this is
17:52
just what's around you. And and if you and if you dare
17:55
to expand your brain, you can like you can see like there's
17:57
other options. For a long time, I didn't know
18:01
what was next, right, But let not see other people.
18:03
I'm like, oh, maybe I can try that, or maybe I can try this
18:07
and. You you don't know what your
18:09
options are until you see it right?
18:11
Like. Exactly.
18:13
If you thought that you're, you were destined as a disabled
18:15
person to just like not do anything and just sit around all
18:18
day, then you're going to think that that's the only option
18:22
until you see. And I love, I don't know about
18:24
you, but I love finding out what people's jobs are with LDND.
18:27
I'm like, OK, that that's possible.
18:29
That's possible. I love it.
18:31
It's yeah. And it's such a vibrant
18:33
community. And yeah, it just shows that you
18:36
really can't do anything. Like you don't need to limit
18:39
yourself just because you have LG and D just need to adapt like
18:43
you said. Sir, this man, yeah.
18:45
So true. How are you doing now?
18:48
I mean, we've gone through college, we've gone through
18:50
fatherhood. I mean, you're still obviously a
18:53
father, but how? How are you doing right now?
18:55
I'm doing all right, you know, it has its days, right, like
19:00
it's, it's still the growing pains of it all and I'm doing
19:02
all right. I think that I have much more
19:05
hope than I did say five years ago or 10 years ago.
19:10
It's a struggle. It's a struggle even just
19:12
learning what you need and you know, as your abilities change,
19:17
how to adapt and, and, and even acquire the resources, right?
19:21
Like this resources out there too.
19:23
Like right now I need this new like Hoyer freestanding lift to
19:27
help me get in bed. And the lady gave me the tab the
19:30
other day. She was like, oh, it's going to
19:31
be like between 15 and 18,000. I'm like, yes, I'm like, what?
19:38
And so it's like just tapping into figuring out how to get
19:42
these things provided, how to take care of yourself.
19:45
It's the challenge in it all. And honestly, that's what
19:47
motivates me to the to to even be an ambassador and to give
19:52
back and to and to be part of these type of things like this
19:54
podcast or whatever, to just help other people that might be
19:59
in a smaller community. That's just like, I don't know,
20:02
I need this thing, but I don't know how to get it.
20:04
Or, you know, when people see me out with my driving my van, they
20:07
go, how did you get your van? Like what did you do?
20:10
You know, I don't have a problem.
20:11
I'll talk to you an hour, you know, and just I call this
20:15
person and, you know, and. So I'm dealing, but it's hard.
20:19
It's learning how to adapt and, and to, and to give it to God,
20:24
you know, I don't know if you're a religious person, but some
20:26
things just, you can't fight, you know, and you just have to
20:29
accept that. And I'm a person who likes
20:31
control, you know? And as I get older, I'm learning
20:36
to give, give it over. Yeah, for sure.
20:40
And and it's so annoying that we have this condition.
20:43
There's people who like control because we literally have no
20:46
control both physically and just in life.
20:49
But that's good because it's it's teaching us some important
20:52
life lessons, I think. For sure.
20:55
Thanks for keeping it real. I think it's easy to just jump
20:58
online and be like life is good, but day-to-day.
21:03
It's all right, you know, it's. Sometimes, yeah.
21:08
Yeah, I think it's, it's hard for me because I like to wallow
21:13
in the sadness for a bit, but then I, I don't like to do it
21:16
for too long because I, I need to bounce back.
21:19
Otherwise I'll just stay there for a very long time.
21:22
So like if I have a fall, I'm like, OK, I need to cry.
21:26
And then if I can't get back up, I'm like, wow, I really feel
21:29
really useless right now. I know I'm not.
21:31
But in that moment you do. But then, you know, the next day
21:36
comes and you're like, OK, life isn't over.
21:38
You just carry on. So it's all about like just kind
21:42
of ebbing and flowing with the emotions, right?
21:44
Someone Sunday is nice. Some days it's it's terrible.
21:49
But I think some days of the worst days are the days that
21:52
make me feel more disabled. Like if I come across like more
21:56
barriers in life or like if I'm separated, like if I'm with a
22:00
group of friends and I'm separated because like there's a
22:04
set of stairs if we go somewhere or just little things like that.
22:08
Like those are the days that make me more aware of my
22:11
condition more than any other day, you know?
22:14
Yeah, yeah, it's. And like you said, I think it
22:17
all. You know, it's funny.
22:19
I just say we get older, you know, like, I don't think that
22:22
we really changed that much. And it's kind of like the same
22:25
thing that I had felt as a teenager is like, sometimes you
22:27
just want to be normal. Sometimes you don't want to go
22:30
in the back entrance or go down that long ominous hallway to the
22:34
one elevator, you know, like you just want to go to the front
22:38
door. Just enjoy yourself, you know,
22:41
But I'm learning to especially having a child.
22:45
I'm, I'm learning to not wallow in the sadness too much and to
22:50
find that joy again. You know, I, I was telling my
22:53
friend the other day is like, man, when's the last time you
22:55
just was like, Oh my God, yes, like, you know what I mean?
22:58
Like just it was the last time you did that, you know, and I
23:02
just want to get back there. And that's kind of what go my
23:05
goal is right now. It's not a physical destination
23:09
or a financial one, but I think that MD and just like the the
23:13
give and take of it has brought me in this place of cynicism and
23:18
like pessimistic is, you know, not all the time, you know, and
23:22
it's like, I don't want to be that guy, you know, especially
23:25
when you see it manifesting in a little kid.
23:27
You're like, no, I don't want to do this to someone.
23:31
So I'm learning to change and and see the brightness in some
23:34
of it. Like for real, that's my
23:36
mission. I.
23:37
Don't know about you, but I use a lot of disabled humour.
23:41
You have to, right? Yes.
23:42
You do. Like I have two younger sisters
23:46
who also have two. I like me, but they can do a lot
23:49
more than I could at their age. So it's kind of hard for me.
23:53
But I'm like, if I watch like my sister get up from the floor,
23:56
I'm like, just you wait, you won't be able to do that soon.
23:58
Right. Oh, you think you got it?
24:02
Just you wait, you don't know what's coming.
24:06
So yeah, we do joke about it together, which is quite nice.
24:09
Just a good health journey. That's where I'm at now.
24:11
Like, I want to get back to just feeling better, you know?
24:15
Yeah. Yeah.
24:16
What kind of things are helping you just deal with like pain or
24:20
any like little struggles with your MDI?
24:23
Do what do you call those things?
24:25
My mom got me this thing that's like one of those vibrating
24:27
plates that like helps you stimulate blood circulation.
24:32
Oh, yeah. I love that thing.
24:33
I'm, I, I so many things that I could think of.
24:35
But I know other people have said it before, but that's one
24:37
because I don't walk and like blood circulation started to
24:40
become a thing like especially during COVID because I was
24:44
getting out a lot more before that.
24:46
But then I got used to just like sitting still.
24:50
And then I started getting like edoema sometimes where I'll get
24:54
swelling in my legs. And it was like, so those that
24:57
vibrating play. If you got one, if you can get
25:00
one, those things are awesome. OK, I don't have one.
25:04
I'm going to have to look into that.
25:06
I've also heard that massage guns are good for like similar
25:09
reasons. Good thing it's kind of like the
25:12
same, but mine is just like this platform.
25:14
You just can put your feet flat on it and just.
25:19
That's so fun. Oh, it feels so good.
25:21
I would ask you to demonstrate, but I don't want you to
25:24
humiliate yourself like that on the podcast.
25:25
It would be so fun. Oh, please do a YouTube video on
25:32
that. That would be.
25:33
So fun. I will.
25:34
That would be funny. Yes, yes, I love that idea.
25:37
Speaking of, I know you mentioned when we met that you
25:41
do YouTube. Tell us a bit about that.
25:44
So, I mean, right now I'm just been like just gathering tonnes
25:48
of content. I, I haven't really posted much,
25:51
but like I told you, like that journey of finding that
25:54
happiness again, that's really what the, the point of my page
25:58
is. I mean, I think there's so many
25:59
of us who do like the educational thing and sharing,
26:03
but I I think I want to, it's really just a personal journey.
26:05
It could be anybody's YouTube place because mine is more
26:08
called, it's called finding Fred.
26:10
And really I'm just trying to find that guy again.
26:14
I'm trying to find that prom king.
26:15
I'm trying to find that I want my son to see the fun side of
26:18
me, not the pick your shoes up. No, we can't do that.
26:23
Come on, hurry up. You know, I don't want to always
26:25
be that guy. I want him to know that, not
26:28
that I'm cool, but like that I'm happy, you know?
26:31
I want him to think that, know that that is, like, content.
26:34
And it's just finding that Freddie, you know?
26:37
Yeah. You are cool.
26:38
I mean first impressions only, but you are quite cool.
26:42
You do not seem like that strict parent at all.
26:46
And it you know what it is 'cause his mom is so much more
26:48
cooler than me that I have to be the tough 10.
26:51
No, you were outnumbered. So then I got to be the tough
26:55
one. Oh yeah, wow.
26:58
So the coolness level is is high.
27:01
It must be it's. It's overflowing.
27:05
Oh wow, I like that though. I like that you're really in
27:09
touch with yourself and wanting to just ground yourself as much
27:14
as you can and keep things real and find the goodness in life
27:18
because life's too short, right? Yes, yes, so, oh, I got a good
27:23
one. So, and I'm going to document
27:24
this one. So I'll be, I'll be like
27:26
vlogging too. But one of our fellow LGM deers,
27:31
Keisha, Keisha Graves, Graves slightly different spelling than
27:35
mine, but Graves is as well Cambridge, MA.
27:38
She's a fashion designer. She does a lot of inclusive
27:41
clothing. She's doing, ironically, a
27:44
fashion show in my state. So I was like, you know what?
27:49
I don't do this type of stuff, but I'm going to show up for my
27:52
friend. So I'm going to be in her
27:53
fashion show. You going to be in it?
27:56
Yes. I won't be in her fashion show,
28:00
yes. I thought you were going to say
28:01
like, I'm going to go support, I'm going to watch.
28:03
I'm going to be in. It you're going to be in it,
28:06
that's incredible. What is it?
28:08
Like yes, October 11th. OK so by the time this episode
28:12
comes out, it would have already happened.
28:14
So guys, check this video out like Fred, this is this is past.
28:19
This is past you holding yourself accountable.
28:22
You badly logging listen. I confirmed yesterday so I I
28:26
won't back out. Oh wow, that's incredible.
28:30
I can't wait to see that. I'm so proud of you guys.
28:34
I'm jealous. I'm not there like, wow, that's
28:36
so cool. See, it's just so good to see
28:40
other LGMD fans just smashing it out there, you know, doing cool
28:43
things, different things. That's what I'm saying.
28:46
Like it's like I started finding people that I would just connect
28:49
with, and then we just kind of talk and push each other.
28:52
Yeah, I was like, you know what? I'm going to do that.
28:55
Yeah, you never know unless you try.
28:59
That's so cool. That that is so cool.
29:00
Like seeing that inclusiveness, like I was told my, I told my
29:04
son, I said, you know, give me a year.
29:07
We're going to be in Target. Like, I wasn't wanted to try it,
29:11
you know, I mean, now that that stuff is changing, I want to be
29:13
a spokesperson for us because I remember thinking like, oh, I'm
29:18
done. Oh, I have a muscular dystrophy.
29:20
I'm going to be in a wheelchair. I'm cooked.
29:23
No one's going to like me, you know, like, and now it's just
29:27
like this world is so accepting, at least on the surface, right?
29:32
And I want to be part of that so.
29:36
And it's so important to see yourself represented out in the
29:39
world. Do you feel like there's enough
29:42
representation right now? Or do you or growing up, did you
29:45
feel like you had enough people to look up to and be like, this
29:48
is what I want to be like? Not at all.
29:51
Not at all. I've never seen.
29:53
I mean, it wasn't until I was a good adult that I was like, oh,
29:56
see that person, I want to be like him, you know, And, and it
29:59
was like a fellow ambassador that I've met and I was just
30:01
like, wow, he's really cool. Like, I like how he does his
30:04
thing, you know? But no, no, especially not the
30:08
media. No, not, not anybody.
30:10
Not anyone of the disabled community, you know.
30:13
I feel like it's something you have to still look for.
30:15
It's not something that's like in mainstream, like it's not
30:18
going to come across some random person's feed unless the
30:21
algorithm knows that they're interested in that kind of
30:24
world. So I think we've still got a way
30:28
to break into anyone's algorithm, you know, not just
30:32
our little community, Like we already know, you know, like we
30:35
need to push this out to everyone else that maybe don't
30:38
know. Absolutely.
30:40
And that's kind of why I'm doing my vlog that way.
30:42
My, my, my content where I wanted to be more lifestyle
30:46
based, where it's more like anyone can be inspired that, you
30:50
know, here's this person starting here and they're trying
30:52
to get here, you know, as opposed to this is what muscular
30:57
dystrophy. And like, that's part of it.
30:58
That's part of who I am. But I'm we're all so much more,
31:02
you know, and that's partly what I want to show.
31:05
And that relatable side is just, I can inspire anyone that wants
31:08
to change and grow and get better and get in touch with
31:12
what's holding them back. Or you know what I mean?
31:15
Yeah, definitely. What kind of work are you doing
31:18
with MDA? So I'm going, I'm, I'm on, I'm
31:22
just starting my third year as a ambassador.
31:25
So far I've been part of a couple events.
31:28
I've spoken. I, I go to the fill the boot
31:33
kick off. I don't know, do you guys do
31:34
fill the boot over there? I don't think I've heard of
31:36
that, no. What?
31:38
What is it? Enlighten us.
31:40
OK. So MDA is the Muscular Dystrophy
31:43
Association and with the fill the boot is, it's a fundraiser
31:47
that they do where the fire departments, we'll go out and do
31:50
fundraising and it's just kind of like a play on words, right?
31:54
They, they would, back in the day, they would fill their
31:56
boots, literally those big tall fire boots with donations.
32:00
And now it's just a word they use a term, but it's fundraising
32:04
for the youth camp, for the muscular dystrophy youth youth
32:08
camp. So I usually speak at the kick
32:10
off where all of the regional firefighters come together and
32:14
it's just kind of like a kickoff to motivate the fundraiser
32:17
people, the different departments.
32:19
And the one that I spoke that it was the firefighters from
32:23
basically almost the whole East Coast.
32:25
So it'll be fire departments from all over the East Coast and
32:28
they'll come together and we kind of just do breakout groups.
32:31
It's like a conference and we in a couple of us from the
32:35
community will speak to them and like thank them and talk to them
32:39
about services that we received through the MDA and let them
32:42
know that it's just not money they're collecting and going to
32:46
nowhere, right? It's just cool to touch the
32:49
fundraisers, touch the people that are donating money and then
32:53
other people in the community. I enjoy being an ambassador a
32:56
lot. And, and it also I've written
32:58
the highlight of being an ambassador.
33:00
You would think it'd be going out and doing like cool things,
33:02
but just our monthly, we have like a monthly ambassador
33:05
meeting where, I mean, a good one will be like 50 families and
33:09
it'll be 50 different ambassadors and be all of us on
33:12
like a live video chat and we'll just break out and talk to each
33:15
other. And that's so cool.
33:17
I enjoy that so much. Wow.
33:19
That is really cool. It's just so nice to connect
33:21
with other people in in the community.
33:24
That's the most important thing. Yes.
33:26
Wow, that's so cool to hear about.
33:28
Like the work that MDA do, because MDA is obviously an
33:31
American thing. So I've obviously heard of them
33:34
and I'm aware of like the work that they're doing, but it's
33:36
nice to hear like the work they're doing, you know, like in
33:39
the communities. They work as I would say,
33:42
sometimes you hear people and you see people online that
33:45
criticise them. And I mean, there's always room
33:48
for improvement, right? But at the same time, I think
33:51
they work more as like a liaison to connect because I mean
33:55
there's so many types of MD's, right?
33:57
So it's like, how do you help? Just like it is so many of us
34:01
and this is like they help us connect with those smaller
34:04
communities. So like the C3 community for us
34:06
or the speak foundation, you know, and it, it kind of funnels
34:11
people into where they should be, right?
34:13
And I think it's so cool. You know, I mean, the NBA has
34:16
really, back in the day when I was a kid, they had a person
34:19
that would come to your hospital and be at your appointments and
34:23
they would just would hang out with you and just talk with your
34:26
family and kind of like be that person that just explains what's
34:29
going on. It was really cool.
34:31
You know, they're really awesome.
34:32
Yeah. That's really cool.
34:34
And it's heartwarming to see that one of the bigger things
34:37
too, is seeing the youth in the MB community that our younger
34:41
MBA ambassadors, right? I mean, these kids have so much
34:46
confidence and belief in themselves that I just couldn't
34:50
even fathom at 1617, you know, and, and I'm just so impressed
34:56
by them when they give their speeches.
34:58
I mean, I don't even want to list names because I don't want
35:00
to seem, I don't want to forget someone, but it's a few of them.
35:03
They're just so awesome. And I mean, I tear up.
35:05
I'm like, I'm in, you know, I'm inspired by them.
35:09
And, and yeah, now it's just cool.
35:13
It's cool to see different people at different stages and
35:16
to see that the work we doing, we're doing is making a mark.
35:20
You know, these kids are so much more comfortable within their
35:23
cells and in their skin and I don't see them dealing with
35:27
this. Do I belong thing that we that a
35:30
lot of us older people with envy kind of have dealt with?
35:33
Yeah. Oh, wow.
35:35
If only that was around when I was growing up.
35:37
Like, it's just so nice to see that we are moving in the right
35:40
direction when it comes to representation and also a
35:43
community because I know it's a rare disease, but now we're all
35:46
connected. So there is is like a family.
35:50
Yes, I met 2 little girls at the last thing I did and they are
35:54
best friends from summer camp and they both have the same
35:57
subtype but they met each other at summer camp and now like you
36:00
know one the one girl's mom will pick her up and her their van
36:03
and they're both in their chair is so adore.
36:06
It's so cute, and it's just like, I love it because I was an
36:10
adult when I met someone with that bee, you know?
36:13
And it's just like, these girls are their roommates in college
36:16
now. Like, oh, it's like, come on,
36:19
you know what I'm saying? So yeah, it's beautiful.
36:21
It's beautiful. Where's the movie?
36:24
I need a movie of this. That's so sweet.
36:28
Well, thank you so much for sharing.
36:30
I've honestly learned a lot about the work that MDA does and
36:35
it just like fuels my hope for people with LGMD for the future
36:39
and just when it comes to careers or just life in general,
36:45
like it really is limitless. It's just about adapting, you
36:49
know? Sure.
36:50
I want to end this episode by asking you a question that I ask
36:53
all my interviewees, which is what is one piece of advice that
36:57
you would give your younger self or anyone that's struggling?
37:01
Tap into community. Don't run away from what's going
37:04
on. Tap into community and learn
37:09
what you're going through and connect with someone who's going
37:13
through what you're going through.
37:14
And it's not your fault. Yeah, well said.
37:17
I like that. Amazing.
37:19
Is there anything else you want to add?
37:21
No, thank you so much for having me.
37:24
Thank you We. For this.
37:26
Yeah, we've had such a nice time.
37:28
I hope we can keep in contact. And Fred is an amazing guy.
37:32
Guys, please follow him on socials.
37:34
Where can we find you on social media?
37:36
You can find me on Facebook Fred Graves you'll see my picture or
37:42
you can find me on YouTube Finding Fred there be it's like
37:47
some videos up but you won't see any videos, but you'll see me
37:50
and Instagram. I am King Fred KMG FRD.
37:55
And I will put all the details in the description below as
37:58
well. Thank you guys so much for
38:00
listening to our conversation. I hope you enjoyed it.
38:04
If you got to the end, we appreciate you.
38:06
Thank you so much to Kill LDMD 2 I for sponsoring this podcast.
38:11
I will be back with you guys with another episode very soon,
38:14
but until then, thanks for watching.
38:16
Bye.