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Clinton Herald, March 4, 2006
Clinton Church to Host Benefit
Danica Baker
Herald Staff Writer
CLINTON - Patsy Nichols got up one morning last fall just like any other day.
She had recently started an exciting new job at Hobby Lobby and started to get
ready for work. That's when she noticed she had difficulty swallowing.
"I thought I had had a stroke," Nichols said. She experienced an inability to
swallow or eat, her face was droopy and she had trouble breathing, walking and
talking. She went to the doctor and her doctor sent her to the emergency room.
"I was diagnosed with Bell's Palsy," said Nichols. The doctor treated her for
the condition, but she didn't seem to improve. Nichols then went to a
specialist.
"He knew right away when I described my symptoms," she said.
Nichols was diagnosed Sept. 3 with myasthenia gravis. According to the Muscular
Dystrophy Association, the name comes from Greek and Latin words meaning "grave
muscular weakness." Myasthenia gravis is a chronic auto-immune neuromuscular
disorder of the muscular dystrophy family characterized by fluctuating weakness
of voluntary muscle groups. The disorder is not inherited or contagious, but the
progressive disease has no known cure.
Nichols' symptoms worsened and she spent a week in Iowa City at the University
of Iowa Hospitals and Clinics in the intensive care unit. She smiles now
remembering back on the occasion because the timing was somewhat ironic.
"It was during the MDA telethon," Nichols said.
The condition had left her so weak, she couldn't talk and could barely breathe.
Doctors put her on a new drug called Mestinon. The drug was created through MDA
research.
"By the next morning, I could talk," she said. "It's a miracle drug."
Mestinon is an immunosuppressant medication that prevents the breakdown of
acetylcholine, the chemical that sends nerve impulses to muscles. The drug
allows more control of voluntary functions such as eye movements, walking,
swallowing and breathing.
However, because the drug suppresses her immune system, Nichols is more
susceptible to illness. She also can't take antibiotics because they will
interact with the Mestinon. Nichols counts herself lucky she was only sick for
one day last year, even though that illness put her back in the hospital.
Nichols is being treated for the disease through a MDA clinic in Iowa City. She
said her doctor is one of the best myasthenia gravis specialists in the country
and she is extremely grateful to the MDA for its years of work against MD and
MG. She can testify firsthand that monetary donations to the MDA get put to good
use.
"They do good work," Nichols said. "If you wonder when you see the telethon that
the money really helps people, it does, it really does. I can't thank them
enough."
Nichols' long-time friend, Carolyn Luebe, said the diagnosis has changed a lot
about Nichols' life.
"By circumstances out of her control, her life was turned upside down," Luebe
said. "It's just been a hard time for her."
Luebe said when she visited Nichols in Iowa City, it was hard to see her in the
hospital bed.
"You could just see it in her face. She could barely keep her eyes open, the
muscles were drooping in her face," Luebe said. She added that Nichols had a
hard time getting around at first when she got home, but has learned how to deal
with her condition.
"She has good days and bad days," Luebe said.
Nichols said the Mestinon helps control the symptoms of the disease, but her
condition comes back when it's time to take her medication again.
"Close to the time I take my medication, I start slurring because it's wearing
off," Nichols said.
She explained the hardest part of her diagnosis was having to admit she needed
help.
"It's like a phone card. Most people get 100 minutes. I get 25 minutes. If I use
it all up, I have to be in bed the rest of the day," Nichols said. She explained
she always has to rest after strenuous activity. She said it's sometimes
difficult to get all the things done that she needs to do. "You kind of have to
plan your day ahead."
The disorder is especially difficult for Nichols, because she has always tried
to take care of others and now it's tough to take care of herself.
"I was always kind of the caregiver, instead of the care receiver," Nichols
explained. She said she took care of her mother in her final years and has
always tried to help others when she could. Now, she has to get used to relying
on others for assistance.
"It's a whole different lifestyle," Nichols said. "You just have to learn toask
for help. You have to tell people, 'I can't do that. It's more than I can do.'"
Nichols has been financially strained since getting her diagnosis. She had only
been working at her new job for a little while and was still in her 90-day
probationary period. She has no insurance to cover her medical expenses.
"Being ill and without medical insurance is really difficult," Nichols said. "I
got excellent treatment, but my hospital bills and doctor bills are incredibly
expensive. I just had no idea how awful it would be to be very sick and have no
health insurance. I didn't realize the impact that could have on someone. It
just wipes you out."
She said she appreciates the help she's received from many people in the
community. Her brother, Highland Nichols, took her in when she couldn't afford
to live on her own anymore.
"If it wasn't for my brother, Highland, I wouldn't have a place to live," she
said. She is hoping to be able to get her own apartment again someday in the
future.
She also is grateful to the Gateway Free Clinic for its help during this
difficult time.
"They've been extremely helpful to me, especially with my medications," Nichols
said. "They're absolutely wonderful. They do good work."
She said she feels blessed to be part of such a good community of caring people.
She said her pastor, Elizabeth Liggett at St. Paul Lutheran Church, approached
her to see if the church could help out. The congregation wanted to host a
benefit to help pay for Nichols' medical expenses.
"It was really hard to say yes, that I needed that kind of help," Nichols said.
"The people at my church are wonderful, just absolutely wonderful. They're
always trying to help people."
"We just want to do what we can to help her," Luebe said. "We want to show our
support and help her take those steps to get back on her feet again."
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