One Step at a Time
A Patient with a Rare Neurological Disorder Finally Finds the Treatment He's Been Looking For
Jim Shrum loves the outdoors. He spent much of his retirement tending to his garden and raking hay at his rural Marquand, Mo., home. But these days just walking is a chore as he seeks to recover from a debilitating, rare neurological disorder.
Shrum suffers from chronic inflammatory demyelinating polyneuropathy, or CIDP, which is characterized by progressive weakness and impaired sensory function in the legs and arms. He gets around with the aid of a walker and a motorized wheelchair.
It's estimated that only 80 in every 1 million people have the disorder, which affects the peripheral nerves. Southeast Hospital Neurologist A. Basit Chaudhari, M.D., FRCS, says that in the last 10 years he has treated only five patients with this rare disorder.
The disorder, which is caused by damage to the myelin sheath, the fatty covering that protects nerve fibers, can be triggered by a viral infection, Dr. Chaudhari says. "When nerves can't conduct signals properly, muscles don't work properly," he says.
A retired dry-cleaner, Shrum had always been active. "I had never been seriously ill," he says.
At age 76, he was bothered by numbness in his hands and feet. He visited several doctors, but came away each time without a clear diagnosis. One physician suggested that he might have carpal tunnel syndrome. Shrum's health continued to decline over several months. His arms and legs became weaker. "I kept getting worse," he says.
Dr. Chaudhari examined him at Southeast Medical Plaza. "He was unable to walk by himself," Dr. Chaudhari says. "He was almost wheelchair-bound." Shrum was admitted to Southeast Hospital. Tests confirmed that he suffered from CIDP.
Prescribed a high dose of steroids, Shrum showed improvement and underwent physical therapy at the hospital. "He started to walk," Dr. Chaudhari says.
He returned home only to be readmitted a day later with a bleeding ulcer, which required emergency surgery. As a precaution, Dr. Chaudhari ceased treating Shrum with steroids.
But that was only the beginning of his troubles. His kidneys almost shut down, and he suffered from a collapsed lung. "Then he got a high fever and a gallbladder problem developed," says his wife, Peggy. "He had surgery to remove his gallbladder."
Shrum also developed blood clots in both of his legs. That required treatment, too. "He couldn't put one ounce of weight on his legs," Peggy adds.
With all of his health problems, he was a patient at various times in various departments of the hospital. "I think he hit every floor up there except the maternity ward," Peggy says. Dr. Chaudhari prescribed intravenous immunoglobulin treatment in an effort to neutralize toxins in his blood, but he had a reaction to the treatment. "He broke out in a bad rash," Peggy says.
Dr. Chaudhari then prescribed plasma exchange, a process similar to dialysis, to remove toxins from Shrum's blood. He went through nine treatments, which each lasted an hour and 30 minutes, and underwent extensive physical therapy. The combination has helped dramatically, he says.
Shrum spent more than two months in the hospital and another three months in a nursing home. He returned home last December and continues to exercise daily as he seeks to regain his independence. He regularly walks inside his home with his walker.
"I make four or fi ve rounds around the house," he says. He walks outside too, also with the aid of his walker. Shrum says he prefers to be outdoors. "I am not a house person at all," he says. By spring, he plans to be back in the yard, cutting grass on his lawn tractor.
Peggy says the myelin sheath will regenerate itself and once again protect nerve fibers. Exercise will help restore his muscles.
"There is no long-term terrible disease going on. Shrum's problem is chronic and inflammatory. It's important that he keeps himself mobile," Dr. Chaudhari says. "It's not like cancer that will get progressively worse."
But Shrum will never be cured. CIDP is a chronic disorder. He must continue to exercise to regain his mobility. And staying positive is key to his success.
"His positive personality helps a lot," says Dr. Chaudhari. A self-described morning person, Shrum regularly wakes up and goes out on his deck to drink a cup of coffee and watch the sun come up. He also finds time to reflect on his ordeal.
"But for the good Lord and some wonderful doctors," he says, "I wouldn't be here."