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Our Personal Journey

This 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 reading. 


Part One: Deep Inside Deborah's Brain

Staff Writer "The Charlotte Observer"

The letter arrived in September. Robert Setzer brought the mail
to the kitchen, where his wife, Deborah, was working at her
computer near the bay window overlooking Lake Wylie .

Her breath caught when she saw the envelope.
It could hold her last hope.

"Thank you for sending your medical records for consideration
of surgical treatment for your parkinsonian syndrome," wrote
the doctor from San Francisco San Francisco.
Please, Deborah thought. Please say yes.

"... I do not feel that you would be an appropriate candidate ..."
She fought tears and shoved the letter into a drawer.
For three days, she didn't talk about it.

How can they tell me there's nothing, she kept thinking.
Where else can I go?

She'd 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.

Deborah had dropped out of her Lafayette , LA. , high school
to get married. By the time she was 25, she had three children
and she'd been divorced twice. She spent a year on welfare.
Then, working as a radio announcer and concert promoter,
she put herself through college and grad school.

By 1998, she had worked her way to the position of IT director
of the microcomputer department at the University of Louisiana at Lafayette .

She supervised a staff of more than 120 and a
budget of $1 million in research grants.

Eight months later, she got the diagnosis.
She vowed she would beat it.
Night sweats turn to pain

Deborah 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 Louisiana said
it was Parkinson's.

She tried different drugs, but none worked long. Deborah
knew many people live with Parkinson's for years before
symptoms worsen. But it was clear her disease was moving

The muscles of her arms and legs stayed tense, leaving her
exhausted, 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.

On Christmas Eve 1999, Deborah fell while she was shopping.
A few days later, she gave in and bought her first cane,
black wood with a carved ivory handle. If she had to carry
one, she decided to carry one with style. She collected canes
with silver handles, a red one with a Santa Claus, another
painted like a giraffe.

A 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.

Despite these setbacks, Deborah wouldn't give up. She
sought out other doctors. A neurologist in Houston said
she didn't fit the typical Parkinson's profile. He changed
her diagnosis to multiple system atrophy. Both are types
of Parkinsonism, but multiple system atrophy progresses
more quickly and involves multiple neurological problems.

Deborah heard that people with MSA live for five to seven
years after they are diagnosed.

No time for courtship

Not everything was grim. In the spring of 2001, she met
Robert Setzer, a 58- year-old Charlotte native who had
owned auto dealerships in California . Broad- shouldered
and gregarious, he liked choosing wines and eating
chateaubriand in fine restaurants.

At the time, Deborah was feeling unusually well, thanks
to a new drug she was taking. She took Robert to a Cajun
club beside a Louisiana swamp where they danced to
zydeco music on a Sunday afternoon.

She fell in love with his optimism and the way he saw her
as a person, not a person with a disease. He liked her slim
figure, her long auburn hair and her bright green eyes.
He fell in love with her intensity, her charisma and strength.

If she had only a few years to live, Deborah wouldn't waste
time on courtship. They married June 28 and moved into
Robert's house in Mecklenburg County .

Soon, her pain and stiffness returned.
When strength permitted, she sat at her kitchen computer
and chatted online with other Parkies.

"HOPE! Hang onto that! Please don't give up! This is
a terrible battle that we fight."
She signed it "Tenacity Wins."

"The journey is not over," she wrote another day, "but what
this whole experience has shown me is that 1. God truly
answers prayers 2. There is Always hope 3. You are not crazy
for having weird symptoms 4. Don't give up the fight 5. Keep
educating yourself 6. Doctor shopping is not a bad thing."

Deborah was shopping for a surgeon. She knew surgery
might help when medicines failed.
The newest operation was deep brain stimulation. Instead
of destroying brain tissue as the decades-old operations did,
the new one used a palm-size stimulator implanted in the
chest to send signals to tiny electrodes implanted deep
in the brain.

She had hoped to go to San Francisco for the surgery -- until
she got that rejection letter in September.

Diagnosis changes outlook

A few weeks later, as Deborah turned on her computer one
morning, she lost her balance and fell. She had a fever,
her vision was blurry, and she was shaking.
Robert rushed her to Carolinas Medical Center , where she
was referred to a neurologist.

The doctor evaluated Deborah with fresh eyes. He said her
diagnosis of multiple system atrophy was probably right,
but her pain and stiffness were also symptoms of Parkinson's
disease. He called it "Parkinson's plus." And he referred her
to a neurosurgeon at Wake Forest University in
Winston-Salem , just 1 1/2 hours from Charlotte .

Dr. Stephen Tatter had implanted deep-brain electrodes
in about 100 people since 1997. He had done the operation
more than any other surgeon in the Carolinas .

Deborah got an appointment for early December.
If she didn't get the operation, she told Robert she didn't
want to live.

She liked Tatter immediately. He was tall and soft-spoken
with a boyish air that made her think of Dennis the Menace.
He sat with her for an hour, listened and asked questions.

He agreed that deep brain stimulation is not recommended
for multiple system atrophy, but he too suspected that her
diagnosis wasn't quite right. He said she had motor
symptoms that would probably respond to surgery.

When he moved her arm, he felt tremendous resistance
in her muscles. For an instant, he felt none. Then he felt it
again. That rhythmic effect, called cogwheeling, is typical
in Parkinson's.

Deep brain stimulation wasn't a cure, but he thought it
could help.
He agreed to do it.
Deborah and Robert hugged and wept.
"Would you make a Christmas present out of this?"
Robert asked.

Part Two: Deep Inside Deborah's Brain

Staff Writer "The Charlotte Observer"

A week before Christmas, Deborah Setzer and her husband,

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 shaved.


Instead of letting the surgeon do it, Deborah had asked

Margaret Thrower, Robert's 86-year-old aunt, to cut her

shoulder-length auburn 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 nervous.


"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 said.


`Let's try your hat on'


On Friday, Dec. 21, at 8 a.m. , neurosurgeon Stephen Tatter

met Deborah and Robert in a large room outside the

operating suites at Wake Forest University 's Baptist Medical

Center, 80 miles north of Charlotte . Deborah lay on a gurney.

"Let's try your hat on," Tatter said.


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

procedure," Tatter said.

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 said.

Her eyes watered.


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

her skull.


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 things.


"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 surgery


Shortly after 9 a.m. , following another CT scan, Tatter

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

electrodes went in.


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 would go.


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 surgery.


Deborah knew the risk. She wanted this operation. She told

Robert many times, she'd rather die than live with the pain.


About 10 a.m. , Tatter announced that Bianco was ready

to drill.


"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, flew.


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 did computers.


When the drilling was over, Tatter moved to Deborah's

side to test her muscles. His "before" test:

Make a fist, he said.

Open your hand.

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 time."


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 brain.


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 right.


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

that seemed right.


"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 resistance.


"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

side someday."


Deborah wished she could jump off the table and give him

a hug.  She had her life back.


Part Three: Deep Inside Deborah's Brain

Staff Writer "The Charlotte Observer"


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 Lake Wylie , Deborah told Robert

to turn around.  She reached in the back seat for the Yellow 

Pages she kept there and called eight churches before finding 

one with a midnight 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, for hope.


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 grandmother's recipe.


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 others.


Back in surgery


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 97.4.


Robert called Tatter's office. The doctor-on-call told them

to get to the hospital in Winston-Salem , 11/2 hours northeast

of Charlotte .


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 brain.


Now, Parkinson's symptoms were the least of Deborah's

worries. The infection could kill her.


At 11:15 p.m. , Deborah was back in the operating room.

Tatter undid everything. He took out the electrodes,

wire and stimulator.


Everyone was disappointed. But Deborah did not blame

her surgeon.

"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 problems


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 back

to California for training that was supposed to lead to

a management job at a Charlotte dealership. That job

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 Lake Wylie .

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 country.


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

on South Boulevard . Twice while she was eating, Deborah froze.

The episodes lasted a few minutes each.

After dinner, as a surprise, Robert drove to the Holiday Inn

on Woodlawn Road 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 IV.


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 fever.


She knew this meant trouble.


Part Four: Deep Inside Deborah's Brain

Staff Writer "The Charlotte Observer"


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 stiffness.


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 worse.


On Monday morning, Feb. 4, Robert packed Deborah in the car

and drove to Wake Forest University Baptist Medical Center .

They showed up at 8 a.m. , without an appointment.


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 Charlotte in a fury. He didn't think they

were taking his wife's problem seriously.

"I think they're trying to kill her," said Robert, talking on his

cell phone. "She's been running a temperature for nine days."


In Charlotte hospital Later that day, Deborah's fever got worse. 

Robert called back to Wake Forest . The nurse practitioner said 

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 eat.


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

to fight."


She had planned to have the deep brain stimulation again,

once her infection was gone. But that night, she changed

her mind.

"I'm not sure I'm willing to take the risk again," she said.

"I never thought I'd say that."


Over the next few days, doctors and nurses watched

Deborah closely.


When Tatter learned that she'd been admitted to the

Charlotte hospital, he felt bad. He thought they had done

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

Forest hospital. He wished he had seen her himself.


The Charlotte doctors 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 recognizable

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 cried.


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 worked

before they married. He flew out for an interview and got

an offer.


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, Deborah's dermatologist,

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 Belmont beauty shop

before Deborah had her hair cut for surgery. She was

smiling and beautiful.


"Oh, she'll look like that again," the doctor said.

"I'd better look better after not eating all week,"

Deborah said.


Robert was relieved to see her sense of humor.

"I get my wife back," he practically shouted.

But Deborah didn't share his joy.

"I've had enough," she said one day. "I'm just

worn out."


A report to Tenacity's pals


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 her."


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 wanted spaghetti.

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 her.


About an hour later, one of the doctors came by.

Robert was embarrassed. Deborah just giggled.


Wig and makeup do wonders

The next day, she went home.


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 too sick.


Robert knew the job offer in California wouldn't wait forever.

They talked about moving. They had lived on her disability

checks since December.


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 expected.


"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 and drugs.


"When am I gonna start feeling better?" she asked,

starting to cry.

Demas said it was hard to know.

"A year from now, this will all be history," he said.

"Like a bad dream, I hope."


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 implant.

"Think anybody would do it on me again?"


Demas shook his head.

"I just don't think anybody would stick their neck out

again. I could be wrong."


"Ha!" Deborah thought. She had heard "no" before,

and it only made her more determined.

When they left the office, Deborah told Robert she

wanted the surgery. She wanted to be able to move

without pain.


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 Parkies.


Robert said OK. They would call Tatter at Wake Forest .

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

the medicines.


His only regret was that they didn't keep her in the hospital

that Monday.


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 again?"


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 thumbs-up.

Her eyes glistened with tears.


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 Wins!



Member Information

If you would like to add your story to the website, simply email me at tenacitywins@runbox.com    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 disorder.

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.

Tenacity's Photo Site

Photo page for Robert & Deborah showing:

  1. PET scans and the differences between them.
  2. DBS surgery
  3. Recovery from surgery and subsequent operations
  4. Family & Holiday photo's


A safe place to share and read about neurological disorders and personal experiences.