system implanted in Max, the proce-
dure is a bit more complex. The initial
surgery, performed under local anes-
thetic, with the patient awake, begins
with nickel-sized burr holes made in
the patient's skull. Leads, consisting
of thin, coiled, insulated wires with
electrodes, are implanted through
the holes into the brain. An extension
connects to the leads and is threaded
under the skin from the head, down
the neck and into the upper chest.
In a separate procedure, a pace-
maker-like device (a neurostimulator),
containing a battery and electronics,
is implanted beneath the skin in the
chest below the collarbone and is con-
nected to the extension.

Standing Up
It took about three
months for Max to feel
the positive effects of the -
surgery. "One day I was
at the St. Mary's Fair [in •
Orchard Lake] in the Fun
House with my friends;'
he said. "I left my
wheelchair outside and
was walking inside it. I
grabbed onto a rail and
I realized I was standing
straight up — and I was Dr. LeWitt
comfortable
Sandy remembers Max coming
home that day. "He said he was in
that big, round, tubular, spinning area
where you can stand stiff with your
arms and legs out to touch the top
and bottom, and the tube turns you
upside down:' she said. "He didn't even
think about it; he just stood up and his
body let him. I had had a dark cloud
over my head every day. But that day, I
wasn't sad. I had a calmness come over
me; it was amazing!'
For Chuck, the incident took place
right about the time when he started
to worry the results of the surgery
were not going to be successful. But
once the signs of improvement began,
they progressed well.
"The same week, Max came home
from a friend's and realized he had
come home without his wheelchair,
and said he would walk back to get it;'
Chuck said. "We watched him through
our kitchen window as he walked
down the driveway. He just walked
away. That was our big day."
Max continued to get better. "He was
a little stiff and he did need to concen-
trate, kind of reworking the brain pat-
terns again:' Sandy said. "We did a ton
of physical therapy that actually just
ended." And then there was driver's

training, which Sandy said he "passed
with no problems."

An Understanding
Chuck offers a different kind of sup-
port to Max than his parents gave him.
"They were great:' he said. "But they
didn't have it, so they couldn't relate. At
least Max doesn't feel like he's all alone
with this."
Both Chuck and Max continue to
push through their symptoms. "Max
always has muscle spasms — whether
he is active or resting — and has
some uncomfortable muscle spasms
when doing activities that are continu-
ous like driving, walking long dis-
tances as well as general spasms when
he is playing sports:' Sandy said.
For Chuck, who has
backpacked and takes
spin classes, "this disease
is more uncomfortable
than painful. I don't
notice the tremors all
the time but I do think
about things like how
far I'll have to walk from
the car in a parking lot:'
ves.
said Chuck. "I handle it
by challenging myself,
e and Max, too, seems to
embrace that challenge.
He walks a mile home
from school; he's skiing again and can
do anything with his friends. Neither
of us is going to run a marathon, but
we get along just fine day to day. Max
doesn't let things get him down too
easily!'
Aside from the boy who was once
in Max's class — the Herczegs don't
know others with their type of dysto-
nia.
"Generalized — childhood-type
— dystonia is relatively rare Dr.
LeWitt said. "Some kids who have
features of dystonia have a secondary,
acquired form that is the results of
cerebral palsy or some other type of
brain injury, rather than the genetical-
ly determined disorder that dystonia
generally is."
Even in other forms, dystonia is not
common, but has affected a few nota-
bles, including professional hockey
player, Rem Murray, diagnosed with
cervical dystonia, which can affect the
neck and shoulders, and pianist and
conductor Leon Fleisher, whose focal
dystonia, affecting his right hand, was
the subject of the Academy Award-
nominated documentary Two Hands.
Symptoms in both men have been suc-

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Defying Dystonia on page A16

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