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 to ask 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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