Paralyzed from the neck down, Billy Beene spent three months in hospice care and was told he was going to die when something only his wife believed would happen did: he began to recover.
Beene, 83, was diagnosed with Guillain-Barré syndrome (GBS) on Jan. 22 after he began to experience numbness in his feet and hands in late 2016. He visited countless doctors before he finally received his diagnosis, and since he was so far gone by then, the prognosis wasn’t good.
“They said I was going to die,” said Beene. “The pain was so bad, I said, ‘Let me. Just let me die.’”
The disorder, which can be triggered by an acute bacterial or viral infection, is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord that’s characterized by numbness, weakness, and paralysis.
The two treatment options for Beene were either to clean his blood or to put him on an immune system medication. Doctors thought Beene was too old, weak, and had GBS for too long to try to clean his blood, said his wife, Ella. So, for five days, Beene took three bottles of immune system medication through an IV.
The Beenes were told that’s all that could be done. Beene was in the hospital for 11 days before he was sent to rehabilitation at Community Howard Specialty Hospital. However, Beene was too weak to even be moved, so he was sent back to the hospital where he stayed for five days before being transferred to a long-term care unit in Mulberry, Ind.
“All they were doing over there was just giving him pain medicine. That’s all they could do. I was there. I fed him. Every time there was a meal, I drove all the way over there and fed him,” said Ella.
Home with hospice
With nothing else to be done, Beene was sent home and spent the next three months in hospice care with Ella at his side. Doctors warned Ella that once he was home it would be like she was taking care of a newborn baby. Ella said that was exactly how it was.
She fed him, changed his diapers, and got up every two hours during the night to give him pain medication. The only thing he could do that an infant couldn’t do, she said, was talk.
Still, Ella wasn’t deterred. She still believed her husband of 50 years would recover.
“Hospice said he wasn’t going to make it. They even brought me in a box to put in the refrigerator, and they said, ‘This is for him on his last day.’ I said, ‘I’ll put it in there, but I’m not accepting that because I know he’s going to get well. I know he’s going to get better,’” Ella said.
Beene remembered his two adult children visiting regularly. They’d stand at the foot of the bed, he said, and yell at him that he couldn’t give up.
“They’d come over and holler at me, ‘Fight, dad. Fight, fight fight,’” said Beene. “One of the boys would say, ‘Get mad, dad. Get mad. Just get mad, and fight back.’ So, I decided, ‘Well, if I’m going to die, I’m going to hurt all these people here, kill her and all the kids. So maybe I’ll just fight.’ So I started fighting, and boy, it was horrible. The pain was unreal.”
His kids started bringing over a stationary bike, picking up Beene, and putting him on the bike. They’d tie his feet to the pedals. His son would sit on the floor on one side, and his daughter would sit on the floor on the other side. They’d move the pedals. They did it every day, Beene said.
After about three months, and still in hospice care, Beene said he could feel himself start to be able to put a little bit of pressure on the pedals.
“They said, ‘You’re going to walk, dad.’ They done that every day for I don’t know how long. It finally got to where I could push a little bit,’” he said.
Beene’s ability to push a little on the pedals reaffirmed what Ella always thought: Beene would get better. Ella called the doctors and told them Beene needs to be in rehab, not in hospice. After battling with insurance, Beene finally was accepted as an in-patient at Community Howard Specialty Hospital.
According to Rehab Manager David Kirubakaran, Beene’s situation was bleak when he arrived.
“He couldn’t move anything but his head. Even his voice was kind of feeble, and he had swallowing issues, almost a total paralysis when he first got to us,” he said. “At that time it didn’t look hopeful, but we have seen patients like that. We have helped patients like that.”
The staff immediately got to work on Beene. They began by simply getting him into a vertical position using a piece of equipment, which required him to be strapped on and raised to a standing position. From there, the staff began working on trying to build up his muscle. He had gone from 208 pounds to 167.
Kirubakaran said he could see the emotions that were running through the family.
“His attitude in general, really even at that point, was always cheerful. He didn’t know what was going on. You could tell he was afraid, sad, going through the entire spectrum of emotions,” he said. “His wife would be there, cheerful at his face, but she’d be sitting there in the chair, crying, not knowing what was going to happen because it looked kind of bleak. He couldn’t do anything for himself.”
He noticed right away, though, that Beene had two very important aspects that increase the chances of recovery: motivation and strong family support.
“What we find are that [those] are big, big key factors in the outcomes. He really did have those,” said Kirubakaran.
After two weeks, Beene could put some weight on his legs. That was an important sign, said Kirubakaran.
“Once we started seeing glimmers of him starting to get better, we knew we could get him to a point where he could go home,” he said.
Soon enough, Beene could move his legs enough to walk with the assistance of several aids. And it got even better. After 39 days as an in-patient, he could walk with a walker.
Beene remembered the day he first walked on his own with the support of the walker.
“I tell you what. The first time I got on the walker and walked about 10 feet, I stopped and went, ‘Yeah!’ Everybody in there turned around and said, ‘What’s the matter with you?’ I said, ‘Look at me! I’m on a walker! I’m standing up!’ My kids told me I can yell anytime I want to now,” he said.
Today, Beene continues therapy twice a week as an out-patient, and he continues to improve. He now can walk on his own and do everything Ella had to do for him on his own.
Ella said he’s truly advanced from his newborn state.
“He’s really growing up,” she said, laughing. “Now he’s learning to walk. He’s getting close to his terrible 2s.”
Continuum of care
Beene’s story where he was able to return home and function on his own is one the rehab facility strives for. Currently, the facility boasts and 80-percent success rate of patients being discharged back home and not to another level of care. The facility discharges approximately 40 patients a month with an average stay of 12 days.
The high rate of success is a result of the comprehensive level of care at the facility, said the rehab manager. It offers a team of in-house physicians, case managers, occupational therapists, physical therapists, speech pathologists, dietitians, chaplain services, and pharmacy assistance.
The patient population typically includes seniors, those with Parkinson’s, neurological disorders, failure to thrive, joint replacement, multiple traumas, head injuries, amputations, transplants, and stroke victims, to name a few.
“Most of my therapists are certified in very specific rehab techniques, and the best part is it’s all very transparent. We’re held extremely accountable. All our numbers are published. We are benchmarked against regional, national averages for functional outcomes,” he said. “Our goal is to get 85 percent of our patients back to their home so they’re not utilizing other resources when they get discharged.”
The best part about the job, said Kirubakaran, is seeing success stories like Beene’s, which serve as hope for others going through similar situations.
“We don’t claim to save lives, but we get them back to the lives they want,” he said. “To see them go through that whole cycle of getting back to what they want to be able to do is so extremely rewarding.”
Community Howard Specialty Hospital is located at 829 N. Dixon Road.