The Charlotte Observer: Online Edition
Posted on Wed, Mar. 20, 2002
Deep Inside Deborah's Brain: Last of Four Parts
2nd setback, almost out of fight
KAREN GARLOCH
Staff Writer

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
infection.

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 healthy.

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.

SOURCE: The Charlotte Observer
http://www.charlotte.com/mld/observer/news/2895756.htm

The Sunday Charlotte Observer (Mar. 17, 2002)
started a Four Part Series on Deep Brain Stimulation.

The Complete Special Package is now available at:
http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside_deborahs_brain/

Part 1/4: Deep Inside Deborah's Brain:
http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside_deborahs_brain/2876779.htm

Part 2/4: Deep Inside Deborah's Brain:
Ready For Surgery (Check out the 10 Slides!)
http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside_deborahs_brain/2882714.htm

Part 3/4: Deep Inside Deborah's Brain:
Infection Threatens Deborah's Life
http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside_deborahs_brain/2888845.htm

Part 4/4: Deep Inside Deborah's Brain:
http://www.charlotte.com/mld/observer/news/2895756.htm
http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside_deborahs_brain/2895756.htm

This is a very detailed personal story designed to increase
Parkinson's Awareness.

Thank Deb at:
Deborah Henderson-Setzer <[log in to unmask]>
(support her, but please don't try to sell her something)

If you're impressed with the job that the Observer and
Karen Garlock have done... You may wish to offer them
a little positive feedback as well..

Main number:
(704) 358-5530

General feedback:
[log in to unmask]

Karen Garloch
Karen Garloch writes on Health for The Charlotte Observer.
Her column appears each Monday. You can reach her at
(704) 358- 5078 or e-mail [log in to unmask]

cheers ...... murray

* * *

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn