Man humbled by rare flu complication

CROPSEY, Ill. - Jeff Noyd was a retired police and fire officer who did just about everything on the farm.

"Now, Rose (his wife Rosemarie) has to help me with toileting needs," a frustrated Jeff said. "I can't even wipe my own butt. I can't get my arm back. It's really humbling."

"He went from combining to being on the couch (unable to use his arms and legs) in a week," Rosemarie said.

Jeff slowly is getting stronger and gradually is regaining movement in his legs, arms, hands and fingers. But his neurologist told him that he may never be at 100 percent strength again.

Jeff has Guillain-Barre syndrome, a rare disorder in which the body's immune system attacks the nerves. What results is weakness and tingling in the extremities. But the sensations can grow and may paralyze much of the body.

"It's a drastic disease you don't know nothing about," Rosemarie, 59, said in their Cropsey home.

"I wouldn't wish this on my worst enemy," said Jeff, 63.

He sat in a lift chair with his walker in front of him. On a table beside him were a telephone (he puts it on speaker) and eating utensils modified by a friend so Jeff can feed himself.

Beside him was his dog, Cassidy, a sheltie who seldom has left Jeff's side since the paralysis took hold. Rosemarie sat across from Jeff, keeping a watchful eye.

"It's a devastating disease," Jeff said. "It's frustrating ... The extent of my day is sitting in this chair."

Jeff isn't giving himself full credit. He does leg, arm, hand and finger exercises, which he believes are helping him. There is no medicine for Guillain-Barre.

He tries to stay upbeat. "You gotta have a positive attitude," he said.

While the cause of Guillain-Barre isn't known, his case may have been triggered by influenza.

"Guillain-Barre is a result of an immune system issue," observed Sue Albee, McLean County Health Department supervisor of community health services.

"There is a one in 100,000 risk of getting Guillain-Barre, but it can be triggered by an infection, including flu," Albee said. "There are serious complications of influenza, and that's why we encourage people to reduce their risk of flu, including getting a flu shot."

Jeff was a police and fire officer for Quad City International Airport and retired a few years ago. For the past several years, he and Rosemarie have lived in Cropsey and he has worked for farmer Jeff Abbey, helping with mowing, repairing equipment, spring tillage and fall harvest.

"I was healthy as a horse," Jeff said.

In August, Jeff experienced vomiting and diarrhea, then other symptoms. While he was never diagnosed, he believes he had influenza.

"I couldn't seem to get over it," he recalled. "My immune system was so low, it took me three weeks to feel good again."

"Then I noticed (in early September) that I was having a helluva time doing things with my hands," Jeff said. "I couldn't hold little things. It was weird.

"One day, I was doing harvest work and I couldn't hold onto the handrails to pull myself into the tractor." Jeff - figuring he had a pinched nerve - went to his primary care physician. When he couldn't detect a pinched nerve, the doctor told Jeff that he needed to see a neurologist.

"Then my legs started giving out," Jeff said. "It took two people to get me up."

On Sept. 29, the day before his neurology appointment, Jeff fell on his front porch and couldn't get up.

"When he fell, he couldn't move his legs or arms," Rosemarie recalled. "I was scared to death. I told him 'Don't you die on me."'

She called 911 and Jeff was taken by ambulance to Advocate BroMenn Medical Center in Normal.

Following tests and after the Noyds reported Jeff's earlier gastrointestinal and influenza symptoms, Dr. William Raino, a neurologist, concluded that Jeff had Guillain-Barre.

"I was shocked," Rosemarie said. "Most people never heard of it."

While in the intensive care unit, Jeff was given intravenous immunoglobulin (IVIG). Immunoglobulin contains healthy antibodies from blood donors. High doses can block the damaging antibodies that may contribute to Guillain-Barre, according to Mayo Clinic.

Jeff had physical and occupational therapy to get his nerve endings to begin responding again. He was in BroMenn for 21 days. After he returned home, he had in-home therapy for awhile but recently has been doing exercises on his own.

"My hands and fingers are slowly improving," he said. "I can move my fingers a little bit - before I couldn't - but I have no grip." Carpenter-friend Rich Miller made Jeff adaptive utensils by drilling holes in dowel rods, sticking utensils in there and putting in wood putty to hold utensils in place.

"Before he did that, I couldn't hold a regular fork or spoon," Jeff said.

He can use the phone but it's difficult so he usually hits the speaker button.

While a lift chair - where Jeff also sleeps at night - helps him to stand, he walks as much as he can using his walker to strengthen his legs.

"I can walk OK (using the walker) but it's a struggle still," he said.

Rosemarie gives him his showers and helps to dress him.

"It's not nearly as much fun as it used to be," he said with a laugh. He has grown a beard because he can't shave and Rosemarie won't do it because she's scared she'll cut him.

He knows his strength may never return to normal.

"There's no use in me feeling sorry for myself. It is what it is. But it's going to get better."

Rosemarie said, "We ain't gonna give up."

Jeff has advice for fellow Central Illinoisans.

"Make sure your immune system doesn't get so low that you're susceptible to this," he said. "Taking a flu shot to not get it (flu) is one way of keeping it down."

"I urge people to get a flu shot," Albee agreed. "We still have plenty of vaccine to go around."

Jeff has learned something else: when bad stuff happens, don't give up.

"You give up and you're lost."

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Source: The (Bloomington) Pantagraph: http://bit.ly/1owI2S5