By Kasey Fowler, Staff Writer
Ron Little, an ex-cowboy, ex-long-haul driver and ex-farmer from northwest Oklahoma, currently resides at Greenbrier nursing home because his unusual disease has made him dependent on others.
Little was living a very full life; he drove a truck, did some farming, worked with cattle and loved to ride his horse.
“There is nothing more peaceful than riding a horse down the road at his pace, nobody pushing you,” he said.
Ron also has diabetes. He requires daily insulin shots.
Ron’s full life came to a halt one day. He suddenly became incapable of taking care of even his most basic needs.
“It was like the flip of a light switch,” he said.
It all started in June 2005. Little wasn’t feeling well. He had gone to the doctor on a Monday and been diagnosed with a flu. He continued to feel ill. On the following Wednes-day, Little went to McDonald’s to buy his dogs some hamburgers. He stood by his truck and fed his dogs the burgers. One of his friends came by and they stood and talked for a while. After his friend left Little went in the house.
“I passed out in my house,” he said. “I fell down and never walked another day in my life.”
As he was on the floor of his house he slipped into a diabetic coma.
Little said as he lay on the floor he could hear his house phone ringing but couldn’t get to it.
“I had a cell phone in my pocket but my house is in a dead zone,” he said. “I could hear my house phone ringing, but I couldn’t get to it. It was like I had weights and chains on my legs.”
His kidney’s shut down while he laid on the floor.
One of his friends called to check on him, and when she wasn’t able to reach him, she called another friend from down the road to check on him.
Ron was found the following Saturday in his home. He was loaded up and taken to the hospital.
Once at the hospital, he was told he had gangrene in his left foot.
“I was told I would lose my leg,” he said. “The surgeon told me he would try to save as much of my leg as he could, but if he had to take it all he would.”
He had to have a special arterial scan before he could have surgery.
Eventually Little’s left foot required amputation.
“After surgery I woke up in a room. There were people walking around all dressed in yellow and I said, ‘I thought angels wore white.’”
He also was on dialysis because his kidneys had been damaged during his diabetic coma.
Later, he started having an unusual thickening of the skin over his hands, arms and legs, and his muscles began to tighten up, which rapidly caused a loss of ability to use his arms and legs. Within three months, he couldn’t even scratch his face or move in bed. Most of his body became as stiff as a board. Only his abdomen, chest, neck, face and right foot functioned normally. Little was totally dependent. His thinking, talking, breathing and use of neck remained normal.
Because Little was no longer able to take care of himself, he was transferred to a nursing home and has been there ever since.
The diagnosis was made from muscle and skin biopsies in the fall of 2005: nephrogenic systemic fibrosis (NSF). Less than 500 cases have been diagnosed worldwide since the disease was identified eight years ago. The probable cause for the disease has been found in an unusual problem related to a combination of renal failure requiring dialysis and a certain radiology technique.
Medicare/Medicaid, which Little has, doesn’t allow for physical therapy care after the first few months in a nursing home. If a nursing home patient needs extensive rehabilitation care and is not a candidate for a rehabilitation center, the patient has to pay for this with his or her own money. If the patient was living at home, Medicare/Medicaid would have no problem paying for what is needed. Medicare/ Medicaid is paying for the cost of a nursing home, medications and three times a week dialysis.
“If I were anywhere but a nursing home they would pay for it,” Little said.
A physical therapist has donated her time twice a week over the past year to improve Little’s abilities as much as possible. With equipment given to him and with her help, he has made some gains. He now is able to freely use his right shoulder and partially use his elbows. To a minimal extent he can use his hands to feed himself, scratch his head and push the call button, though it’s not enough to propel a wheelchair, shave or help with other personal needs. His hips and knees still are unusable.
No one knows, yet, how to soften all of the muscles so they can start working again. Having a kidney transplant has shown promise and Little is on the list.
Obtaining high-tech devices to allow Little to interact more in his environment is the next step in helping him. A reclining electric wheelchair would allow him independent mobility once transferred into the chair. A speech-activated environmental control device would allow him to control his television, be independent with making and receiving telephone calls and turning on and off lights in his room.
Little and his family cannot afford the $17,000 such equipment would cost. He could benefit from specialized comprehensive rehabilitation management, but Medicare/ Medicaid does not cover this extensive level of care for nursing home patients.
If there is anyone willing to help Little, they should write to the NeuroResources Outreach Services, 4120 N. Portland, Oklahoma City, OK 73112, Attn: Mr. Little’s Creative Funding. This is a nonprofit entity serving people with limited or no financial resources for services or equipment needs.
