THE FOX FOCUS...
ON THE COMMUNITY
Overcoming
“the Subtraction
of Parkinson’s”
Patient council members Soania Mathur, MD,
and Dave Iverson both live with Parkinson’s
disease, but they share more than that
diagnosis. Soania interviewed Dave about his
role as the Foundation’s contributing editor
and Partners in Parkinson’s moderator, and
their shared commitment to staying
engaged in the Parkinson’s community.
Soania: Dave, you not only create
award-winning films on Parkinson’s
disease, but you are in many ways the
journalistic voice of The Michael J.
Fox Foundation through webinars,
podcasts and events. Was being
proactive in the PD community a
conscious choice for you?
Dave: I guess, when I think back, its starts
on the day of my diagnosis. T things
wo
stand out — the shock of the news of
course, but also something that happened
hours later. My doctor and I happened
to wind up on the same streetcar in San
Francisco, which abruptly came to a stop. I
remember looking up and catching his eye.
He looked at me, smiled and said, ‘Well,
just remember from now on, it’s all about
balance.’ I think about that incident often
because in so many ways, living with this
condition is about balance, both literally
and figuratively. And for me, part of that
process has been to be engaged from
the start.
Soania: You have a family history
with Parkinson’s. Did having that history give you a framework for coping
with this disease?
Dave: Y for example, my dad was a
es,
lovely, graceful man and he dealt with
14 THE FOX FOCUS
Soania
Mathur, MD
Dave
Iverson
having Parkinson’s with great peace. He
always had the point of view that it could
be worse; there are tougher things than
this. So I think I did learn that from him.
On the other hand, there’s sometimes a
danger in being too accepting. I think you
have to figure out how to be graceful and
accepting, but also push back at the same
time — again, it’s a balance.
Soania: Acceptance doesn’t equal
complacency — that’s something we
take to heart in my own family, and
it’s what I try to communicate in my
children’s books. (Editor’s note: Soania has
recently published her second children’s book, “Shaky
Hand’s — A Kid’s Guide to Parkinson’s Disease,”
which is available on Amazon.)
Dave: Exactly.
Soania: So what are some of the ways
you’ve found to push back?
Dave: I do think that participating in
research is the single most important thing
that we as a community can do.
we’re looking to make faster progress. It’s
also an opportunity to learn more and get
extra information about what’s going on
with your PD. I don’t know if this is true
for you — in fact, I’m sure it’s not because
you’re a scientist by training, a doctor —
but for me, as sort of the classic nonscientist, who stumbled his way through
high school science, it’s all been a
revelation. I have this fascination now with
neuroscience. Nothing like a little
self-interest to change your orientation as
to what you find fascinating!
Soania: Do you now see a difference
in the landscape of education and
resources available to people
diagnosed today?
Dave: I think there are so many more
resources than there were when we were
diagnosed. I think Michael and his
Foundation have impacted people’s
understanding that they themselves are
part of the solution.
Soania: I feel the same. What was it
that made you want to devote time to
helping the Foundation in its
mission?
Dave: I had the opportunity to interview
Michael for a film about six years ago. And
I came away from that inspired by the
Foundation’s laserlike focus on advancing
research. It’s important to have something
to believe in when you’re living with this
disease. And the Foundation is something
I’ve come to believe in without
reservation.
Soania: Yes — we’re an integral part
of the process.
Soania: Absolutely. The sense of
community it has created is really
vital when you’re facing the
challenges this disease brings.
Dave: As you know, the percentage of
people who participate in research is quite
small. But we all have to join in the effort if
Dave: Y I’m not sure you remember
es!
this, but you and I were once talking about
support groups. I made this kind of
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offhand comment that I’m not really a
support group kind of guy, and you looked
at me and said, ‘Y you are,’ referencing
es,
our conversations as part of the
Foundation’s Patient Council. And of
course, it’s true. Not everyone sees
themselves as a “support group type,” but
it’s important to find support where it
makes sense, because it’s so empowering.
Soania: Absolutely. It helps to know
you’re not facing it alone.
Dave: Exactly. I’ve come to think of
Parkinson’s as a disease of subtraction. It
takes things away, one by one. Whether
that’s the swing of your arm, your sense of
smell or whatever it happens to be. So
addition becomes really important; you
have to figure out what you can add back
into your life. I feel incredibly lucky and
blessed for the opportunities the
Foundation has given me to add things
back in.
Soania: How do you feel about the
future? Do you have hope for the
future?
Dave: Enormous progress is being made.
Does that mean I think there’s a cure
around the corner? No, actually, I don’t
think there’s a cure around the corner, but
I absolutely believe that we will find a way
to slow down disease progression, if not
bring it to a standstill. That will happen.
And our job is to do everything we can to
hasten that day, I think, by being active in
whatever way makes sense for us, and by
staying as healthy as we can so we get to
benefit when that day arrives.
Learn more about Dave Iverson and find
educational resources offered by MJFF
at michaeljfox.org/education.
SPRING 2015 15