page is where we tell our story. The links on the very
bottom right side of this page will direct you to our photo
album. The album shows my actual DBS surgery.
The Charlotte Observer wrote about what we went through from
December 2001 - February 2002. Unfortunately, the link to the
article is no longer available. The text of the
article is below. It is long but well worth
Part One: Deep Inside
Deborah's Brain Date: 3/17/02 KAREN GARLOCH Staff Writer "The
letter arrived in September. Robert Setzer brought the
the kitchen, where his wife, Deborah, was working at
near the bay window overlooking
breath caught when she saw the envelope. It
could hold her last hope.
you for sending your medical records for
surgical treatment for your parkinsonian syndrome,"
doctor from San Francisco San Francisco. Please,
Deborah thought. Please say yes.
I do not feel that you would be an appropriate candidate
fought tears and shoved the letter into a drawer. For
three days, she didn't talk about it.
can they tell me there's nothing, she kept
else can I go?
been diagnosed with Parkinson's disease two years before,
in 1999. She was only 37 then and enjoying a new career
after many rough years.
had dropped out of her Lafayette,
high school to
get married. By the time she was 25, she had three
she'd been divorced twice. She spent a year on
working as a radio announcer and concert promoter, she
put herself through college and grad school.
1998, she had worked her way to the position of IT
the microcomputer department at the
supervised a staff of more than 120 and a budget
of $1 million in research grants.
months later, she got the diagnosis. She
vowed she would beat it. Night
sweats turn to pain
had been having problems for a year. At first, she
woke up at night, sweating. She felt muscle spasms and
pain in her left thigh. She thought it was early menopause.
The pain moved to her right leg and eventually to
her arms, hands and face. Her doctor in
tried different drugs, but none worked long.
many people live with Parkinson's for years before symptoms
worsen. But it was clear her disease was moving quickly.
muscles of her arms and legs stayed tense, leaving
as if she had just finished running a marathon. Sometimes
her whole body jerked uncontrollably, a
side effect of the medicine. She was always tired, but
she couldn't sleep.
Christmas Eve 1999, Deborah fell while she was
few days later, she gave in and bought her first
wood with a carved ivory handle. If she had to
she decided to carry one with style. She collected
silver handles, a red one with a Santa Claus,
like a giraffe.
year later, on Jan. 26, 2001,
her 39th birthday, Deborah started
using a walker. In her university office, she kept pillows
and blankets on the floor so she could repair computers
while lying down.
these setbacks, Deborah wouldn't give up. She sought
out other doctors. A neurologist in
didn't fit the typical Parkinson's profile. He
diagnosis to multiple system atrophy. Both are
Parkinsonism, but multiple system atrophy
quickly and involves multiple neurological
heard that people with MSA live for five to seven years
after they are diagnosed.
time for courtship Not
everything was grim. In the spring of 2001, she met Robert
Setzer, a 58- year-old Charlottenative
who had owned
auto dealerships in California.
Broad- shouldered and
gregarious, he liked choosing wines and eating chateaubriand
in fine restaurants.
the time, Deborah was feeling unusually well,
a new drug she was taking. She took Robert to a
beside a Louisianaswamp
where they danced to zydeco
music on a Sunday afternoon.
fell in love with his optimism and the way he saw
a person, not a person with a disease. He liked her
her long auburn hair and her bright green eyes. He
fell in love with her intensity, her charisma and
she had only a few years to live, Deborah wouldn't
on courtship. They married June 28 and moved into Robert's
house in MecklenburgCounty.
her pain and stiffness returned. When
strength permitted, she sat at her kitchen computer and
chatted online with other Parkies.
Hang onto that! Please don't give up! This is a
terrible battle that we fight." She
signed it "Tenacity Wins."
journey is not over," she wrote another day, "but
whole experience has shown me is that 1. God truly answers
prayers 2. There is Always hope 3. You are not
having weird symptoms 4. Don't give up the fight 5.
yourself 6. Doctor shopping is not a bad thing."
was shopping for a surgeon. She knew surgery might
help when medicines failed. The
newest operation was deep brain stimulation.
destroying brain tissue as the decades-old operations
new one used a palm-size stimulator implanted in
to send signals to tiny electrodes implanted deep in
had hoped to go to San
the surgery -- until she
got that rejection letter in September.
changes outlook A
few weeks later, as Deborah turned on her computer
she lost her balance and fell. She had a fever, her
vision was blurry, and she was shaking. Robert
rushed her to CarolinasMedicalCenter,
where she was
referred to a neurologist.
doctor evaluated Deborah with fresh eyes. He said
of multiple system atrophy was probably right, but
her pain and stiffness were also symptoms of
He called it "Parkinson's plus." And he referred
a neurosurgeon at WakeForestUniversityin Winston-Salem,
just 1 1/2 hours from Charlotte.
Stephen Tatter had implanted deep-brain electrodes in
about 100 people since 1997. He had done the
than any other surgeon in the Carolinas.
got an appointment for early December. If
she didn't get the operation, she told Robert she
liked Tatter immediately. He was tall and
a boyish air that made her think of Dennis the
sat with her for an hour, listened and asked
agreed that deep brain stimulation is not
multiple system atrophy, but he too suspected that
wasn't quite right. He said she had motor symptoms
that would probably respond to surgery.
he moved her arm, he felt tremendous resistance in
her muscles. For an instant, he felt none. Then he felt
That rhythmic effect, called cogwheeling, is
brain stimulation wasn't a cure, but he thought it could
agreed to do it. Deborah
and Robert hugged and wept. "Would
you make a Christmas present out of this?" Robert
Part Two: Deep Inside
Deborah's Brain Date: 3/18/02 KAREN GARLOCH Staff Writer "The
A week before Christmas,
Deborah Setzer and her
Robert, drove to
Margaret's Beauty Shop in Belmont.
In two days, she would
have brain surgery for Parkinson's disease.
She came to get her head
Instead of letting the
surgeon do it, Deborah had asked
Robert's 86-year-old aunt, to cut her
hair. She wanted to donate it to
Locks of Love, a charity
that makes wigs for children.
As Deborah climbed into
one of the old shop's swivel
chairs, Robert stood by
with a video camera. It was quiet,
and that made Deborah
"I'm gettin' scalped,"
she said, forcing a smile.
Deborah told jokes to
relieve tension, but it was harder
Thrower cut thin strands
of hair and spread them neatly
on her workstation. A
tear rolled down Deborah's cheek.
"I'm just telling myself
I'm doing some good for some
little girl," she
`Let's try your hat
On Friday, Dec. 21, at
met Deborah and Robert in
a large room outside the
operating suites at
Center, 80 miles north of
Charlotte. Deborah lay
on a gurney.
"Let's try your hat on,"
He slipped a heavy metal
frame over Deborah's bald head.
Like a halo, it rested
precariously on her nose. As odd as it
looked, it would serve
two important purposes.
Once attached to her
skull, the frame would be bolted to the
bed and hold her head
still during surgery.
It would also serve as a
map to compare to the X-ray scans
of her brain. Tatter
would use the frame's coordinates to help
plot the spot in her
mid-brain to implant the electrodes.
"Most people say this is
the worst part of the whole
He showed Deborah the
needle for injecting anesthetic
into four spots on her
head. She grabbed the rails at the
Tatter held the needle in
her right temple for several
seconds. Then he stuck
again at the back.
"Ow. That one hurts," she
Gently but firmly, Tatter
kept working. When he had injected
all four spots with
lidocaine, he screwed in thick pins,
pushing the pointed tips
through Deborah's skin and against
Deborah couldn't see
this, but she saw fear in the eyes
of another patient
watching across the room. She tried
to think of other
"Parkinson's is wasted on
me," she told the doctor.
"Just think. If I was a
guy, I wouldn't need Viagra. I'm stiff
all the time."
1st phase of
Shortly after , following another CT scan,
pushed Deborah and her
gurney into the white light of the
operating room. The first
phase of surgery -- implanting
electrodes in her brain
-- would soon begin.
In the second phase, she
would be asleep for the
implanting of a
stimulator near her collarbone.
But she would stay awake
for the first part.
Tatter needed to ask
Deborah questions as the
A nurse fastened
Deborah's head frame to the end
of the bed. Off to the
side, Tatter and neurosurgery
resident Dr. Sabatino
Bianco reviewed computer scans
of Deborah's brain. They
looked for the subthalamic
nucleus, a lima bean-size
spot in the center of the brain
where the electrodes
Deborah smiled and talked
as the doctors and nurses
moved around her. She
asked Tatter how long she'd
have to wait after
surgery until she could let people
write on her bald head.
She planned to raise money
for Parkinson's patients
by collecting autographs.
He said she'd have to
wait at least three weeks to make sure
she didn't get an
infection. They're rare, he said. About one
in 100 for brain
Deborah knew the risk.
She wanted this operation. She told
Robert many times, she'd
rather die than live with the pain.
About , Tatter announced that
Bianco was ready
"You'll hear a sound now,
and you'll feel movement,"
Tatter said. "It'll
vibrate but it won't hurt. ... It sounds
like we're rotating the
tires on your car."
The buzz drowned out
conversation. Bianco made a
11/2-inch cut in the top
right of Deborah's scalp and
stretched her skin apart.
Then he drilled the hole,
the size of a dime, in
her skull. Tiny chips of bone,
light pink from blood,
Deborah smelled flesh
burning. She wondered if the drill
was cordless and what
size drill bit he used.
If she hadn't been the
patient, she would have liked
to watch. She liked
putting things together and taking
them apart, the way she
When the drilling was
over, Tatter moved to Deborah's
side to test her muscles.
His "before" test:
Make a fist, he
Hold a cup.
Deborah complied with
stiff, jerky movements.
Tatter held her left leg
and circled it around.
He felt resistance from
her rigid muscles, on and off,
in the cogwheeling effect
typical of Parkinson's patients.
"It's tight. It's so
tight," Deborah said. "I'm in so much
pain all the
Then, Bianco worked at
Deborah's head. He pushed a long
thin catheter carrying
the four pencil-lead-thin electrodes
into the center of her
If the operation worked,
her stiffness and pain would
be gone, at least on her
left side. A second implant
might come later for her
At Deborah's side, Tatter
pressed buttons on a keypad.
It would send electricity
to her brain, just as the chest implant
would do later. He warned
she might feel tingling.
"Oh, wow," Deborah said,
touching Tatter's arm with her
left hand. Her left side relaxed.
But the rush was almost too much.
"That makes me really
dizzy," she said.
Tatter adjusted the
current until he found the voltage
"Wow. I just felt my arm
relax," she said. It was the first time
she'd been without pain
for as long as she could remember.
Tatter lifted Deborah's
left leg for another circle -- the "after"
test -- and there was no
"Your leg is perfect
now," he said. "You're just as loose
as you can be. ... I
think it's going to do the trick for you,
on the left side at
least. We may be back and do the other
Deborah wished she could
jump off the table and give him
a hug. She had her life
Part Three: Deep Inside
Deborah's Brain Date: 3/17/02 KAREN GARLOCH Staff Writer "The
On Christmas Eve, three days
after her surgery, Deborah Setzer
celebrated with her husband at
his cousin's home in Charlotte.
Everyone was surprised at how
smoothly she walked without
a cane, how easily she lifted
her fork during dinner.
They watched a videotape of
"Shrek." It was the first time
Deborah had been able to sit
through a movie for months.
As they started home to
LakeWylie, Deborah told
to turn around.
She reached in the back seat for the
Pages she kept there and called eight churches
one with a
Mass. She wanted to pray.
At St. Gabriel Catholic Church,
they thanked God for
Dr. Stephen Tatter, for the
surgery to treat her Parkinson's
disease, for freedom from pain,
At home, Deborah could take a
shower, get dressed and
put on her makeup without having
to take a nap. She baked
a chocolate cream pie from her
She worked at her computer,
sharing her good news
with other Parkinson's patients.
From across the world,
people sent messages to
"Tenacity Wins," celebrating
the hope she represented for
Two days after Christmas,
Deborah got a headache.
Her neck hurt on the side where
the surgeon had tunneled
the wire that connected the
stimulator in her chest to the
electrodes in the center of her
brain. By Sunday morning,
Jan. 6, Deborah's pain had
worsened, and she had a fever
-- 101.7 instead of her normal
Robert called Tatter's office.
The doctor-on-call told them
to get to the hospital in
A spinal tap was normal. But the
MRI scan showed Deborah
had a 1-centimeter abscess under
the hole drilled in her skull.
It was a staph infection in her
Now, Parkinson's symptoms were
the least of Deborah's
worries. The infection could
At , Deborah was back in the
Tatter undid everything. He took
out the electrodes,
wire and stimulator.
Everyone was disappointed. But
Deborah did not blame
"He gave me a chance," she said.
"He gave me hope."
A few days later, something
strange happened. Her body
froze. For three hours, she
couldn't speak or move, but she
could see and hear what was
going on around her. It could
have been a seizure. Or it might
have been a freezing
episode that Parkinson's
patients sometimes have.
To be safe, her doctors
prescribed an anti-seizure drug,
Eleven days after the second
operation, Deborah went home.
She would need antibiotics for
six to 10 weeks to treat the
infection. But she was already
asking when she could have
a new implant. Maybe in six
months, Tatter said.
"I'll definitely have this
surgery again," Deborah said.
"I know it works."
A few other
Meanwhile, Deborah and Robert
faced other problems.
Robert had once owned several
auto dealerships in California.
When they met, he was living in
Charlotte, but he went
training that was supposed to lead to
a management job at a
disappeared after the Sept. 11
terrorist attacks. He found
work in auto sales, but had to
stop in mid- December
to care for Deborah.
Robert still had health
insurance for a while, but they worried
they would lose their two-story
house on LakeWylie.
They were behind on mortgage
payments. Deborah borrowed
from her retirement fund, but
some bills just didn't get paid.
Before Deborah developed the
infection, she had planned
a big slumber party for her 40th
birthday on Jan. 26. She had
invited neighbors, her
neurosurgeon and other Parkinson's
patients from across the
She wasn't well enough for that
anymore, but Robert wanted
her to have a special night. He
insisted that she dress up.
She chose a sleeveless top with
a jacket that covered the
IV catheter in her left arm,
where she gave herself antibiotics.
With a neighbor couple, they
drove to McIntosh's Steakhouse
. Twice while she was eating, Deborah froze.
The episodes lasted a few
After dinner, as a surprise,
Robert drove to the Holiday Inn
for dancing. Deborah knew it was useless
to resist. When Robert stood to
dance, she held on so tight
she thought she pulled out the
It wasn't much like dancing,
more like swaying. But she did it,
for Robert. She spent the next
day flat on the couch.
Two days later, a rash broke out
on her chest. It went away
with one application of
hydrocortisone cream. But then it
came back. Then she got a
She knew this meant
Part Four: Deep Inside
Deborah's Brain Date: 3/17/02 KAREN GARLOCH Staff Writer "The
What else would go wrong?
Deborah Setzer wondered.
She had felt so much better
after Dec. 21. The brain surgery
to treat her Parkinson's
symptoms had worked. For three
weeks, she was nearly pain-free.
She had walked without
a cane, stayed up past 6, and
felt almost normal.
But then, in early January, she
got a staph infection.
It could have killed her. The
neurosurgeon had to remove
the implanted electrodes and
stimulator that had worked
so well to relieve her pain and
Now she had this rash. Was it an
allergic reaction to one
of the drugs? She was taking
more than 40 pills a day.
Over the next few days, tests
showed Deborah was probably
having a reaction to Dilantin,
one of the drugs she was taking
to prevent seizures. On doctors'
orders, she stopped taking it
as well as the antibiotics she
had been taking since the
But the rash and fever got
On Monday morning, Feb. 4,
Robert packed Deborah in the car
and drove to
They showed up at , without an
Dr. Stephen Tatter, the
neurosurgeon, was busy, so they saw
the nurse practitioner. They
also saw a dermatologist and an
infectious disease specialist.
They went home with a topical
cortisone cream and a
prescription for an antihistamine.
Robert drove home to
Charlottein a fury. He
didn't think they
were taking his wife's problem
"I think they're trying to kill
her," said Robert, talking on his
cell phone. "She's been running
a temperature for nine days."
Later that day,
Deborah's fever got worse.
Robert called back to
WakeForest. The nurse
Deborah should try Tylenol or
ibuprofen and a lukewarm bath,
standard treatments for fever.
When that didn't work, Robert
called his family doctor, who
told him to take her to the hospital.
Deborah's fever was the highest
it had been, 104.8. A bright
pink rash covered her face,
chest, arms, abdomen and legs.
Her skin was bumpy and hot to
the touch. Sores in her mouth
and throat made it impossible to
That evening, as she lay in bed
at Carolinas Medical
Center-Mercy, she pulled the
blankets to her chin and still
shivered. Normally, she would
have lightened the mood
with some wisecrack. But she had
no strength for jokes.
"I don't know if I'm gonna make
it," she told a visitor
in her darkened room. "I've got
less and less energy
She had planned to have the deep
brain stimulation again,
once her infection was gone. But
that night, she changed
"I'm not sure I'm willing to
take the risk again," she said.
"I never thought I'd say
Over the next few days, doctors
and nurses watched
When Tatter learned that she'd
been admitted to the
Charlottehospital, he felt bad. He thought they had
all the tests needed to rule out
anything besides a Dilantin
reaction. And he knew that would
get better on its own.
Looking back, he wished they had
kept her at the Wake
hospital. He wished he had seen her himself.
worried that Deborah might have
Stevens-Johnson syndrome, a
severe allergic reaction
to medicine. Patients with
Stevens- Johnson are often
treated in burn units; their
skin blisters and falls off.
They can die.
By Wednesday, Deborah's face was
swollen. Her eyes were
like slits in a puffy round
balloon. A splotchy, lacelike rash
covered her body. It looked like
a monster case of poison ivy.
A thin crust formed on her ear
lobes, lips and chin. Sores in
her mouth made her mumble as if
her tongue was stuck.
His wife, barely
Deborah's illness was taking its
toll in other ways. She and
Robert were fighting.
His questions and his mere
presence annoyed her.
She told him to leave her alone.
She was glad when he
went home for a shower and a
change of clothes. When
he returned, she sometimes
pretended to be asleep.
Robert barely recognized her.
She looked so awful,
and she was so mean. It wasn't
like her. He wanted to ease
her pain. He worried she might
die. He was angry about
her care. Sometimes he just
He also worried about money.
They had so many unpaid
bills. The water was turned off
one day. He was still out
of work but pursuing jobs in
California, where he
before they married. He flew out
for an interview and got
Deborah told him to put her in a
nursing home and go.
"I'm not leaving you," he said.
"You have got to get well."
On Friday evening, Feb. 8,
Dr. Elizabeth Rostan, brought
good news. She said
Deborah didn't have
Stevens-Johnson syndrome after all.
It was a reaction to Dilantin,
and the rash would get better.
Robert showed the doctor a
picture of Deborah. It was
taken in December, outside the
before Deborah had her hair cut
for surgery. She was
"Oh, she'll look like that
again," the doctor said.
"I'd better look better after
not eating all week,"
Robert was relieved to see her
sense of humor.
"I get my wife back," he
But Deborah didn't share his
"I've had enough," she said one
day. "I'm just
A report to Tenacity's
On Valentine's Day, a day when
so many lovers are
happy, Robert wrote a worried
update about "Tenacity"
to the online Parkinson's
support group:" She is in a state
of deep depression right now ...
She just lies in bed with
the blinds closed, lights off
and door closed. She won't
even answer the phone at times.
... They can't give her
any medicine at this time for
her depression for they
worry that it will start the
allergic reaction over again ...
Please say an extra prayer for
her ... she must get well,
I am so very worried for
He took Deborah presents --
flowers, a card and a pair
of red silk pajamas -- but she
didn't seem to care. He sat
with her and asked if there was
anything he could do.
To his surprise, she said she
Would he get some?
They ate their spaghetti dinners
together in the hospital,
and when they were finished,
Robert said, "Boy, I tell you
what. I sure would like to
cuddle up next to you."
Deborah smiled and scooted over
in the narrow bed.
He crawled in and just held
About an hour later, one of the
doctors came by.
Robert was embarrassed. Deborah
Wig and makeup do
The next day, she went
Over the next two weeks, she
gained strength. She and
Robert talked and teased. She
couldn't remember why
they had argued. She had been
Robert knew the job offer in
They talked about moving. They
had lived on her disability
On Feb. 27, when she saw Dr.
Ronald Demas, her neurologist,
for a checkup, Deborah wore a
wig Robert had given her
before surgery. With lipstick
and makeup, she looked better
than the doctor had
"Right now, I could never guess
you had Parkinson's
disease," Demas said.
But Deborah was still tired and
frustrated. She was still
running a low-grade fever. She
needed a cane again.
In the exam room, she leaned
over and rested her head
on a table. She had spent 12
days in the hospital in
February in a fog of fever, pain
"When am I gonna start feeling
better?" she asked,
starting to cry.
Demas said it was hard to
"A year from now, this will all
be history," he said.
"Like a bad dream, I
But, even when the infections
and drug reaction passed,
she'd still have Parkinson's
disease. And without deep
brain stimulation, some of her
symptoms had returned.
She was thinking about another
"Think anybody would do it on me
Demas shook his head.
"I just don't think anybody
would stick their neck out
again. I could be
"Ha!" Deborah thought. She had
heard "no" before,
and it only made her more
When they left the office,
Deborah told Robert she
wanted the surgery. She wanted
to be able to move
And she wanted to be an example
for other Parkinson's
patients. She wanted to travel
and talk to people and
raise money to help other
Robert said OK. They would call
Tatter at WakeForest.
When the doctor called back,
they talked more than an hour.
They went over what had
happened. Tatter told Robert that
he and his colleagues felt they
had taken Deborah's problems
seriously. That's why they did
the tests and took her off
His only regret was that they
didn't keep her in the hospital
Robert's hard feelings
disappeared. He had always called
Tatter their "angel of mercy."
Maybe he would be again.
Deborah watched and listened as
Robert paced nervously.
Finally, Robert came to the main
reason he'd called.
"Would you do the surgery
Tatter was surprised Deborah
would want it now.
But if anyone understood the
risks and the benefits,
she did. Yes, he said. He would do it
when Deborah was
Robert gave Deborah a
Her eyes glistened with
Later, at her computer, she
wrote a long note to other Parkies.
She described the whole ordeal,
down to her plans to have
the surgery again.
"I am 40 years old, I am not
ready to stop my life because
of PD. The surgery worked, I was
better and I will be again.
I have a memory to hang on to
and something to look
forward to as well ... dancing
with my husband again."
She signed it: Tenacity
If you would like to
add your story to the website, simply email me at firstname.lastname@example.org
I can either create a webpage for you, or you can create
your own. The more personal information that we
can share with one another about neurological disorders,
the better. This includes caregivers, family
members, friends, and those with this type of
Things to check out. These are links
to our story!
September 2002: Deborah
received definitive results via 2 PET scans that she
does not, nor did she ever have Parkinson's Disease or
Multiple Systems Atrophy.