Bunny Clark and the 10th Annual Huntington's Heroes Walk

Bunny Clark talks about The Walk for Huntington's Disease May 28th

Episode Transcript

(00:15):
It's time to speak up, It'stime to speak out. Welcome to We
have a Voice Community discussions about Huntington'sDisease and juvenile Huntington's Disease. Show host
James Valvano. You are broadcasting fromNova Scotia, Canada and Toronto, Canada

(00:41):
via Spreaker, YouTube, Spotify andmany other networks. This is we have
a Voice Radio. My name isKevin Jess and I'll be your host today.
Today on the show, we havea very busy lady. She is
well known in the Honey's community,and so I would like to send out

(01:03):
a very warm welcome to Bunny Clarkfrom Toronto, Canada. Bunny, it's
great to have you on the show. Thank you, Kevin, it's great
to be on the show. Yeah, we've never done this before, so
done this Nope. Sorry, Sothis is gonna be the tenth anniversary of

(01:26):
the walk that you do. They'rein Durham, which is a part of
the Greater Toronto area, and sowhy don't you first of all tell us
a little bit about you. Okay, so my name is Bunny Clark.
I'm from actually just east of Toronto, but it's part of the GTA and

(01:49):
Huntington's diseases in my family. Imarried at eighteen, I married a man
who we didn't know at the time, who was one of sixteen siblings,
and we found out after we hada three kids that his mother had Huntington's
disease, and they were all toldit was Parkinson's, but somehow later on,

(02:14):
when the when the siblings started havingsymptoms, they looked into a little
bit deeper and found out it wasHD. So six of his seventeen brothers
and sisters had had Huntington's and haveall passed away from it. So also
my first husband had it about thirtysome odd years ago. He took his

(02:39):
life because he knew he had itwas before they isolated the gene. They
really couldn't diagnose it yet, buthe was convinced he had it because of
things that were going on in himand he I forgot to say, we
did have one other child, sowe have four children together. And so

(03:02):
anyway, years ago, one ofmy nephews from one of his sisters that
had died from Huntington's was in anursing home. He was he was my
favorite nephew and I was his partof a part caretaker, caregiver, and
I couldn't understand why nobody when heended up in the hospital once, they

(03:27):
didn't really know what to do withhim, and they ended up putting him
in restraints and putting a guard athis door. And you know, the
nurses. I asked, you,are you familiar with Huntington's and she's no,
I not really, I don't know. So we tried to educate,
but we didn't have a lot oftime to do that. So anyway,
I was beside myself, thinking,how can people not know anything about this?

(03:53):
So anyway, we had been intouch with the Huntington's Society before that,
you know, a little bit.I had been to a couple events
they had, and I asked them, how come there's no walk out here
or anything for awareness because all otherareas, bigger cities had a walk every
year for Huntingdon's And they said,well, now that you're in the area,

(04:15):
maybe you could organize a walk.So I jumped at it, and
we hope to raise five thousand dollarsthe first year, and we ended up
raising twenty two thousand dollars, whichjust away. Yeah, yeah, that
was that was crazy. So thatwas back in twenty thirteen. So so
yeah, we've come a long way. We made it through COVID and this

(04:39):
is our first real completely in personevent or a walk since since COVID.
So people seem to be pretty excitedto come on out and enjoy themselves again
at Mangal and you know, getto know some part of the community and
sharing some fun because we have alot of fun that day as well.

(05:01):
But yeah, the walks can bequite fun. It can be. Yeah,
there's because there's not only just thewalk, but there's other things planned
around that. You have certain thingsgoing on within the walk. We do.
We have oh man, we haveface painters, we have live music,
we have the Lions Club of Bowmanvilleare putting on the barbecue for us,

(05:26):
so there'll be feed. Um.We have a bouncy castle for the
kids. We are having live horsesfrom a rescue center this year. That's
it's a training center and they're bringingsome of their rescue horses for photographs,
which is pretty exciting. We havethe Remax Hot Air balloon. Oh that'll
be which is like, yeah,it's that's that's really exciting. They're gonna

(05:48):
do tethered rides. Um. Sothat should be pretty exciting for a lot
of people. And what else dowe have. We have the Booneville Fire
Department comes out and their mascot Sparky, and they bring a lot of educational
material for the kids and for people, and you can tour the firetruck.
The Durham Region Forensics vehicle will bethere also for questions and touring and yeah,

(06:15):
it's it's going to be a reallygood time. Yeah, So I'd
be in the bouncy castle was orI'd be I think you're Kevin, We
would allow that, you know,they look like so much fun, and
you know, I'm like, I'malmost a kid myself, like size wise,
so I could probably sneak and geta few bunfies. I remember bouncy

(06:36):
castles when I was little, youknow, and just not so little anymore.
So um so obviously there's a Imean, the reason to be there,
you know, when you get rightdown to brass, taxes, money
right money For me personally, Ido it are our little group of people.

(07:01):
We do it more for awareness becauseit's awful when like I have I
have a suddenly living with me whois in the stage of Huntington's where he
can't be he shouldn't really be athome anymore. But he's not bad enough
to be in you know, ahospital or in a home yet, which

(07:26):
is very difficult, as you know. And you know, if I ever
saw my son, if he everhad to go to hospital and they didn't
know what to do with him andput him in restraints, like, that's
gut wrenching to see. It's horrible. I just couldn't imagine for me,
but it would be like if itwas me, and I just so I

(07:50):
the awareness to me and the educationis the most important thing in the whole
wide world. We need to educatepeople, you know, our medical workers,
and they need to know the properway to care for for people with
Huntington's disease. That's true everywhere yougo. It's that way. You know,

(08:13):
Well, I don't know, orit's like they've taken some small unit
in in their in their training,you know, and and they really don't
know, you know, And theylike to let on. Some people like
to let on they know because youknow, that's the way they are,
But when you get right down toit, they don't. Yeah, Well,
the nurse in the hospital, thecharge nurse, when we admitted.

(08:35):
When they admitted my nephew Roy,I asked her, do you know what
Huntington's disease is? And she saidto me, well, we did learn
about it when I was in school, but I've never known anybody with it.
I've never treated anybody with honey,did she so really she had no
experience whatsoever. Yeah, Well,we're just in the country here, you

(08:58):
know. And when my wife firstone in the hospital, there was a
gentleman there and he also had Huntington'sdisease, so they had two in there
at the same time, which isvery unusual, you know. And anyway,

(09:20):
but so where can people find outinformation online with about your walk?
Well, we have a website.We have an event page and it's a
page where you can go and youcan register for the walk. You can
just see all the details about what'shappening and where it is, or you

(09:41):
could make a donation. I cangive you that website, yes, yes,
okay, so it's a little bitlong, but it's kind of easy.
So it's P two P dot one, cause dot com. Then we
have a Slash h SC National Walk, Slash Event, Slash Durham Dash Walk

(10:15):
and Durham is du r h aM correct? Yes, Okay, So
I think that was simple enough,no big words. I think I can't
never remember it right, so Ihave to look it up every time.
So I'm thinking it's a little commYeah. And or they could contact you
and you can send them the link. Yeah, I can give that.
I can give you my email address. Yeah, yeah, it's Durham Region

(10:41):
HD at gmail dot com. Awesome, that one's a little easier. Yeah.
Yeah. So do you have anythingelse that you want to add?
I mean the money is going tothe Huntington Society of Canada. Correct,
that's correct. It goes for researchand support, so they hire social workers

(11:07):
in areas. Mind you, wenever really have enough, but that's the
way it is. Everywhere. Wehave social workers that are not social workers.
They're resource directors. So they cangive you any information on They can
help you out if you need ifyou need to renovate your bathroom, or

(11:28):
you know, if you have togo, if you just need somebody to
talk to, if you need thecrisis number, or you know, they
can help direct you to different differentservices that are available for people with Huntington's
disease because sometimes there's a lot moreout then than what we think that I
help getting it. Yeah, butthey do support some high end researchers at

(11:52):
Brock University and University and UBC.So there's a lot of there's a lot
of trials going on that they're workingwith them. Yeah, you know,
trying to find it's always something goingon and always and and and it seems
like every time it's a big disappointment. But maybe one of these days we'll

(12:13):
have something that you'll give us somejoy. Yeah, it's been disappointing the
last couple of years because there's beena lot of trials that have not had
this outcome that they were hoping for. But they tell us, I mean,
they're they're the ones that are morein the know with the scientifics stuff
than what some of us are.And they say that even if it's a

(12:35):
failed trial, they still learn.Oh yes they do. Yeah, so
they're still learning. They're just forsome of us it's just unfortunately not fast
enough. That's and we all feelthe same way. Yeah, curtently do
well, Bunny. I think unlessyou want to add something, I think
probably that wraps up the show.We've got your information out there, and

(13:00):
I want to thank you so muchfor coming on. It's always a pleasure
talking to you, Bunny, andI really enjoyed working with you, and
you never know what might happen inthe future. You're right well, Thank
you so much, Kevin. You'rea very kind for offering to do this
and help get our event out there, and I really super appreciate the chance

(13:22):
to chat with you again. Yeah, I wish you all the best success
in the world. So and youknow I'm going to sign out now.
Thank you Bunny again, and forall our listeners, thank you for tuning
in and just know you are loved.