Erin Paterson - Huntington's Disease Heroes

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Episode Transcript

(00:05):
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

(00:31):
Valvano. You are broadcasting from NovaScotia, Canada via Spreaker, YouTube,
Spotify and other networks. This isWe have a Voice Radio. My name
is Kevin Jess and I'll be yourhost today. So today on the show,

(00:52):
I have a special guest, AaronPatterson. She's been on the show
before with me, but I believeit might have been on the TV show.
But it's okay, we're doing theradio show now. And so hello,
Aaron. How are you doing.Hello, Kevin, I'm great.
Thank you so much for having meon today. Oh I love having you
on. And so what we're talkingabout today is you have a new book.

(01:17):
Yes, I have a book thatwas just released and it's not just
in my book. It's the bookfrom the Huntington's community. Because it's written
by twenty six people from nine differentcountries within the HD community. That's impressive,
you know, to get that manypeople to you know, to actually
cooperating and get that all in,you know, it's it's quite an undertaking.

(01:42):
It was a huge job and Idefinitely burnt myself out doing it because
I was just so passionate about theproject. I just kept pushing and pushing
and pushing myself and we actually gotthe book out within ten months. So
back when I started in April oflast year, I wasn't even or if
anybody would want to participate in theproject because I know within the community,

(02:04):
a lot of people keep Huntington's diseasea secret from people. Um, they're
afraid of talking about things. AndI'm out there going, hey, we
need to talk about this. Weneed to tell people how we feel.
We have to connect with each other, um and say these are the hard
things we're going through and teach eachother the lessons we've learned. So that
was the idea behind the book,but I wasn't sure if anybody would be

(02:25):
up for that, because it isa big deal to share your story publicly.
Oh. Fortunately, Yeah, it'sit's a huge big deal to make
that that leap for sure. Yeah. And you know a lot of people
do they they they will hide youknow, it's the family secret, that
type of thing, you know,and which is unfortunate, but but it

(02:47):
is the reality. Then That's howI grew up in my family with it
being a secret, and I rememberthat that's why I said it, and
I yeah, so I just Ijust felt like after I kept my secret
of my gene positive diagnosis for along time, and it just began to
wear on me and I didn't feellike I was really living a full life.

(03:10):
I felt like I was always hidinghalf of myself. So that's why
I started, That's why I decidedto start being public about it, and
I wrote a book about it.And once I wrote a book about it
and it was released for people toread, I just felt like this weight
that had been lifted off my shoulders, like like all of those stories could

(03:32):
live in the book and I didn'thave to hold on to them quite so
hard anymore. And I thought,wouldn't it be great if I could help
other people do that with their stories. And so this book is called Huntington's
Disease Heroes, and so it's acollection of stories from there's twenty six people

(03:55):
and like you say, from aroundthe world, so they all have different
experience is because you know, inevery country, like there's different medical systems,
and there's there's all these different storiesand and uh and how people even
feel are different you know from andand so um anyway, UM, you

(04:18):
also you also had um you weretelling me that you had a social worker
that from the United States or somethingthat did something with your book. Yeah.
So so the book is an anthology, so it's a collection of stories,
and each person wrote a two thousandwords story, so that's about five

(04:40):
to six pages. And we wantedto make sure that we had a wide
range of perspectives in the book.So, um, we have people from
Canada, the United States, India, Scotland, the Netherlands, New Zealand.
Um, and we have people fromall different places within the HD spectrum.

(05:00):
I guess you could stay. So. We have some people who have
decided to go through testing and havefound out their gene positive or gene negative.
We have some people who have decidednot to test. We have a
woman who has had HD in herfamily and has been a caregiver for thirty
years, first with her husband whohad HD, and now with her daughter
who has JHD. We have someother caregivers that are young caregivers that took

(05:25):
over the responsibility for caring for theirparents when they were in their teens.
And we have men and women inthe book. And what was one unique
idea that was brought to me forthe book by Erica at HD Reach was
doing a section in the back wherewe could have questions. So it's kind

(05:46):
of like a book club, anHD book club, I guess you could
say. And we call it thechapter chat. So the idea is that
people could take this book and theycould read one chapter or a couple of
chapter with their family and friends,or with their coworkers or at support groups,
and then there's questions at the backthat will prompt further discussion about the

(06:08):
stories that they've read. Oh that'sthat's that's very interesting, you know.
You know too because it brings abouta deeper understanding of a person's experience,
and it helps people to put themselvesin other people's shoes and think differently.
You know, we all we allhave ways that we think, oh,

(06:28):
this is how I'd act and behavein certain situations, but we don't really
know unless we're actually in that situation. So the questions help prompt people to
think, how would I feel ifI were in that situation, or how
do I think I could help somebodywho's in that situation. Yeah, And
now, how is your book sofar being received? I know that you

(06:53):
recently went to I believe it's anhd YO convention in Scotland. Yes,
so I was a guest speaker atthe convention in Scotland. It was their
first convention that they've held. Therewas over three hundred and fifty people there,
which was really amazing to see.I've never been to a convention that's

(07:13):
that big before, so it wasactually quite overwhelming, but in a positive
way. And we had a tablethere where people could buy the book,
and I just had people coming upto me all weekend just talking to me
about the book and saying that they'dheard about it and that they were so
excited to read it and so happythat the book exists for people in the
community to be able to share theirstories. I even had people who were

(07:38):
in the medical community saying that theywere going to read the book so that
it could better understand their patients,which is what I had hoped would happen.
But you never know, Like Ihad all these dreams for the book,
so it's really it was really niceto see the community jumping on board
and supporting the book. And we'vere released the book on February twenty eighth,

(07:59):
which was about six weeks ago,and we've already hit number one on
Amazon in Canada and the United Statesand sold over five hundred copies, which
for the first six weeks is phenomenal. It certainly is. And especially for
like a rare disease, you're youknow, you're you're you're thinking, well,
how many people are actually going todo this? You know? But

(08:22):
as I think it was doctor doctorBird, doctor Thomas Byrd, he said
he doesn't like to call Huntington,doesn't refer to Huntington's as a rare disease.
He refers to it as more themore the better word for it is
uncommon, right, because you cango to most communities and there's going to
be somebody there with Huntington's disease,So right, how rare is that?
You know? And that's the wayhe puts it. And I do I

(08:48):
do like that word better, youknow, and because it lets I think,
it lets people know that there's anawful lot of people that are in
the Huntington's community, a lot morethan what people think. And so the
fact that that they are responding toyour book, I think is a is

(09:13):
a wonderful thing. Um. Sonow you're you're, you're you're also doing
this to UH to help in regardsto UH Huntington's whether it's research or what

(09:33):
have you. So what what isyour plan with that? In what do
you mean? Well, are yousupporting anything through like proceeds with your book?
Oh? Yeah, Um, fiftypercent of the proceeds from the sale
of this book go to hd YO, And we pick that organization because most

(09:54):
of the authors had a connection withhd YO at some point in their lifetime
and it's supporting the next generation comingup. And they truly are an international
organization although they're mainly based out ofthe UK in the United States, they
do a lot to include people fromall over the world and everything they do.
So that's why we chose to supportthem with the book. And they

(10:16):
have been amazing from the moment wereached out to them or I reached out
to them with the idea of thebook, They've been on board and support
of all along, which has beentruly, truly wonderful to receive the support
from the organization wonderful. We alsohave a section at the beginning of the
book for people who might pick upthe book that are outside of the HD

(10:37):
community and don't really know much aboutHuntington's disease. We have a chapter written
by a scientist called what is HD? So we just really wanted to educate
people because it might not just befamily members who are reading the book.
It could be co workers or friendsor strangers even that are picking up the
book. Yeah, and that's important, Uh, you know, to bring

(11:01):
as many people into the conversations asyou can, because so many people just
don't understand. Yeah, And theissue is, you can even if you
have a connection with HD from outsideof the community and you look up something
on the internet and it says cognitiveissues or trouble walking or Korea, people

(11:26):
don't really understand what does that actuallymean and how does that actually impact a
person. So in the book,we have people who have all these different
symptoms and we show how it's actuallyimpacting their life. What does it mean
to have cognitive disability or cognitive issues? Right? Yes, I mean a

(11:46):
lot of people don't even know whatdysphagia is or you know, they just
they just don't have a clue,and you know, and once you sit
down and actually talk to somebody,the look their eyes get bigger, you
know, because it becomes a horrorstory, is what it does. Now.

(12:07):
Mind you, when you're reading itin a book like yours, I
can think that it might be alittle different than that, right, And
I was kind of hoping that youmight maybe have an exert or something that
you could share with us at oneof the stories. Part of it,

(12:30):
part of a story from your book. Sure I could read the beginning of
somebody's chapter. Sure does that soundgood? That sounds lovely? Okay,
So I have a chapter here thatwas written by Emma Burnip. She was
from the UK, but she's currentlyliving in New Zealand and her chapter is
called How my Uncle Glenn Inspired Mycareer. So I'll just start it now.

(12:52):
As I learned more about Huntington's diseasein my neurology lectures at university,
I found myself noticing familiar signs WhenI visited my uncle Glen. I felt
protective over our small family and wantedto do everything in my power to help
tackle this cruel disease. But itfelt awkward bringing up the taboo subject Huntington's
was kept hidden in our family whenmy grandmother was sick, but one of

(13:16):
the few things I knew was thatmy dad had been tested and he didn't
have the gene. I think Glennassumed if his two older brothers didn't have
the gene, then he wouldn't either. I remember turning to a close family
member who was a nurse for support. We had many long conversations about Glen.
While on the phone with her,I'd pace up and down my bedroom,

(13:37):
glancing out the window and watching theworld go by. Sadly, we
had both recognized the subtle signs startingto surface in my uncle. We both
felt a responsibility to broach the subjectof genetic testing for HD. It was
a strange position to be in tobe able to see the black cloud storm.
Sorry, it was a strange positionto be in to be able to

(13:58):
see the black storm clouds coming feellike I was steering my family towards them.
After Glenn's diagnosis as symptomatic for HD, my family and I could only
support from Afar because we lived inNewcastle, a six hour drive away.
My uncle Glenn lived in London tobe at the heart of the fashion world.
He was a very talented photographer andthroughout his life he traveled all over

(14:20):
the world the photo shoots. Hedid some celebrity weddings and was selected to
photograph the Queen for a celebration ofCommonwealth House. Outside of work, he
had a passion for running and completedseveral marathons from New York to London.
When he had a daughter, shebecame his whole world. He idolized her.
They both loved their daddy daughter dayswhen they would bake cakes together or

(14:43):
go ice skating. His flat wasawash with homemade world's Best Dad cups,
plates and paintings that remained even aftershe had left for university. Unfortunately,
a decline in Glenn's thinking started.Unfortunately, a decline in Glen's thinking skills
started to get in the way ofhis work. He was finding it harder

(15:03):
to plan for jobs, learned howto use the latest digital technology, and
organize his finances. These skills arealso known as executive function. I like
to imagine this as an executive boardof a large company. They make the
big decisions, do all the planningand problem solving, and make sure everything
is done on time so as youcan imagine if your executive board isn't working

(15:26):
as well, then day to daytask can become very difficult. Glenn was
struggling to live by himself in London, so he decided to move back home
to Newcastle. This move was amassive task for Glenn, so my family
and I stepped in to help.Even then, it was more difficult than
we expected. Everything took ten timeslonger, and as Glenn's stress rose,

(15:50):
so did his animosity towards us.When we discovered a box of unopened bank
statements, we realized he hadn't beencoping for a while. We worked with
military style precision to unpack and meticulouslyset up his familiar items so he knew
exactly where everything was. I noticedhis movements were worse anytime he became agitated.

(16:12):
He got distressed if we unpacked toofast and he lost track of things,
so we needed to review where everythingwas over and over. The process
was painstakingly slow, but exactly whathe needed. Wow, he sounds like
such an impressive individual. I choseto share that chapter just because it showed

(16:38):
who her uncle was before before hestarted suffering from HD, and just that
scene of them unpacking and helping himto set up his new place. To
me, really illustrates how the Huntington'swas impacting him. So people on the
outside me not even notice some ofthat, right, his family and friends

(17:03):
did. Yeah. Yeah, andand and and those of us you know,
in the in the community, we'vewe've felt that, you know,
and the difficulty in broaching that subjectto a person is so hard. Uh,
it's just heartbreaking, it really is. And I could feel that when

(17:29):
when when you were reading it,I could feel the turmoil, right,
yeah, uh yeah, that wasthat was very good. And she goes
on to continue talking about her uncleand how he was deteriorating, and how
she decided to become a speech languagelanguage pathologist because because of her experiences with

(17:51):
her uncle, because she wanted tohelp other people in a similar situation.
Yes, yes, so that's prettyamazing the impact her uncle had on her.
Yeah, it really is, andand and and and you know,
you're hearing something from somebody in NewZealand so far away, right, you
know, And and and yet thatfeels very close to us because because we're

(18:15):
sharing, we share these experiences.And so that was that was lovely.
Um So tell me how how howdoes a person go about getting your book.
Um, it's on Amazon worldwide rightnow, so it's available as a
print book and as an e book. Oh okay, And it's it's called

(18:37):
Huntington's Disease Heroes by Aaron Patterson.Um, it's edited by Aaron Patterson.
And we also have the forward writtenby Charles Sabine. Oh yes, oh
okay, which was pretty amazing thathe's supporting the project. And he read
some chapters of the book and wrotethe forward for the book as well.

(19:00):
Oh he's a beautiful writer, hereally is. And yes, yeah,
I'm gonna have to I'm gonna haveto get a copy of that because yeah,
I really want to read because Iwant to find out what happens to
plan And yes, I want tofind out right, And uh so you've
piqued my curiosity. I'm good.I hope that you have piqued uh you

(19:23):
know a lot of our listeners curiosity. With that, I think there's a
story for everybody in here, forsure. You know, we have a
young man who's living with JHD andhe wrote a chapter which is really amazing.
We have uh yeah, we havethree people who are symptomatic that wrote
chapters in the book. Um,we have people who wrote are writing about

(19:47):
going through the genetic testing process.Um, somebody writing about going through in
retro fertilization with genetic testing on theembryos. We have somebody else who didn't
go through that and still deciding tohave a family. And there's another woman
who didn't find out about HD untilher child was born. So in the

(20:07):
first year of being a new momand finding out that your kid has HD
and you want to do everything toprotect them, that was a very traumatic
experience for her. So there's awide range of stories from people in here,
and the idea is you don't necessarilyhave to read the entire book from
front to back if you don't wantto. We do have a little topic
guide in the book, so ifyou're looking, hey, I'm at the

(20:30):
stage in my life where I'm beinga caregiver and you want to read stories
just about caregivers, you could justpick out those stories and read those stories.
Okay, Okay. It sounds likeit's very well planned, very well
laid out, and I don't Idon't think I could have done something like
that, So I applaud you forfor taking that on that's that's wonderful.

(20:53):
Do you have anything else that you'dlike to add. Um, I just
want to thank all of the writerswho shared their stories in the book and
everybody who supported the book from thevery beginning. Um. It was a
big project to pull off, andwe couldn't have done it with the writers
who stepped up to share their storiesand were so brave in being open and

(21:14):
vulnerable with what they're going through intheir lives. Very good. I can
hardly wait to read these stories.And I'm sure there's a lot of other
people out there as well once theyhear about it, for you know,
the ones that listened to us,that that will feel the same way.
And thank you for supporting the bookfrom the very beginning as well. I
know you had me on when thisbook was just a thought, so I

(21:37):
really appreciate that. Well, Aaron, you know you're always welcome. Thank
you. When you know, wheneveryou need to do something like this you
can contact me, I'll and I'lldo it, and that's without question,
right, So thank you anyway.So I wanted to first of all,
thank you Aaron for coming on,and I want to thank our listeners for

(22:00):
tuning in to uh to hear myold man voice and uh uh you know,
but I, as we always say, we want to make sure people
know you are loved.