St. Petersburg Times: Special report

Intro

E-mail the writer:
Bill Duryea

Day One:
Deciding to go
Page 1 | Page 2
Page 3 | Page 4
Page 5

Day two:
The way there
Page 1 | Page 2
Page 3 | Page 4
Page 5

Day three:
When you arrive
Page 1 | Page 2
Page 3 | Page 4
Page 5

 
Walking to Paris: Story by Bill Duryea,  Photographs by Bill Serne  of the Times

Finding balance

Two schools of thought exist on how a bilateral above-the-knee amputee should learn to walk again.

Some prosthetists believe in returning patients to their full height immediately. They make sockets that fit, they attach artificial knees and feet. The rest is physical therapy and gait training, weeks of learning how to walk inside parallel bars and beyond.

The other method is to fit the patient with a steady progression of incrementally taller legs until he is just shy of his original height; sometimes patients ask to be made taller than they were before, but prosthetists know that makes balancing more difficult. The patient might spend a couple of weeks or more at each stage before gaining enough balance and walking strength to move up. Given Jim's age, Bill guessed that the slower approach would be safest.

But with either method, it is a virtual certainty that the prosthetist will make numerous adjustments to the legs.

Making sockets that fit is largely trial and error. But it is complicated by the way an amputee's stumps change shape. If a patient is dehydrated, for example, the stumps shrink. Put too much salt on your fries and the stumps will swell. The more an amputee walks, the more toned the muscles become and that changes the fit of the sockets, too. A bad fit might create a pressure point, which could lead to an abrasion, which could turn quickly into an open sore that would stop the whole process.

New variables are introduced when the prosthetist attaches the sockets to the rest of the leg. The alignment of the socket to the knee and the knee to the shin have profound effects on an amputee's balance.

Set the legs too far back behind the person's center of gravity and he has to compensate by thrusting his stomach forward, a terrible position for the lower back. Put the legs too far forward and the person feels like leaning back, thereby collapsing the knees unexpectedly. A seemingly slight adjustment, such as turning the feet a couple of degrees to the outside, can mean the difference between walking and falling.

Bill had all this in his mind when he began working with Jim. He had been making limbs for people for so many years that he just knew what came after what, why one method might work better for a young person than an older one. Jim never asked for a contract or a written timeline. Everything was done with a smile and a handshake.

Jim wanted to walk and Bill wanted to help him. What more needed to be said?

* * *

Two weeks after the visit with Ertl, Jim returned to Bill's office for a routine adjustment. The left socket was giving him some pain. He said it was uncomfortable enough that he had avoided wearing it every day as he was supposed to.

Bill's solution was to heat the liner and stretch it out. When Jim put the sockets on again, it was the right one that hurt.

Jim was frustrated.

"I doubt all my perceptions," he said.

Looking at Jim's legs inside the sockets, Bill could see no white pressure points. He wasn't sure what the problem was. He wasn't sure there was one.

Maybe it's the position of the feet, Jim said.

Bill shook his head. "If I move the feet forward, you'd fall right over," he said.

Bill decided to change the feet to show Jim where his balance point was. Off came the backward-pointing rectangles and on went the forward-facing feet. Then Bill threw in a twist. He added 8 inches of aluminum pipe to give Jim some height.

Apprehensively, Jim tried them on. He was unstable, like a newborn colt. He became more frustrated and angrier with every step.

"There is no balance now," Jim said.

All the wobbling broke the suction seal on the legs and Jim couldn't control them enough to walk forward. The insides of the sockets were cutting into his groin.

"These are going to slice my balls off," he told Bill. "I can see why people quit. Because this is absurd. This is impossible. This is just a stunt."

Bill left to take a call from another patient. If I have to go through this every day, Jim thought, I won't do it. I can't live my life like this.

"Sorry, this maybe wasn't the best thing to do to you today," Bill said, returning.

The damage had been done. Jim's confidence had suffered a serious blow.

Bill took Jim's legs back into the shop to put the original feet back on and removed the 8-inch shins.

Sitting alone in the therapy room, something made Jim think about Paris. He had a story he wanted to tell of a special restaurant, but he couldn't remember its name or the street it was on. He burst into tears. He'd never felt as at home anywhere else in the world and now Paris was slipping away from him street by street.

By the time Bill returned with the old legs, Jim was so despondent it wasn't clear he would try them on. But he did, and moments later was smiling again. "I can do this," he said.

Jim went to Orlando to see Ivonne for Easter weekend. He didn't wear his legs once.

photo
The hardest part of learning to walk in artificial legs was the work Jim had to do alone at home. He tried to spend an hour or more every day walking.

Another chore

Jim had come to think of the legs, which he left propped in a corner of his kitchen, with the same distaste as paying his bills every month.

His outlook was not improved by the drugs he was taking, in particular one called Neurontin. It was an anticonvulsant usually prescribed for epileptics, but Jim's doctor had put him on it to ease his phantom pain.

When Ertl heard that Jim was still taking Neurontin, he urged him to quit. But Jim had doubled his dosage in the few months since the operation in Sacramento. He was showing many of the well-documented side effects: irritability, depression, memory loss, mood swings and stomach cramps.

Even though it was still early in the fitting, Jim had almost convinced himself the artificial legs were a waste of time. Too much effort for too little gain.

He demanded that somebody provide him with names of other similar amputees who could tell him what to expect.

"Everything falls on a bell curve," Jim said. "I want to know where I am on that curve. I want to know whether my chance of walking is so passingly remote that it would be quixotic to even attempt."

But when he was given the phone number of a man in Port Richey, the sanitation worker Jim had met months before at Bayfront, Jim didn't call.

Someone suggested he contact local amputee support groups. Jim scoffed. He called them nonsupport groups. He believed they would destroy his morale.

Jim's mood worsened with the realization that if he were to return to Paris, he would do so alone. He had always hoped to bring his family with him if he returned, but Jim's burgeoning relationship with Ivonne was not enough to overcome the ties she felt to her family in Orlando. He did not want to live by himself. Even in Paris.

Even in the midst of this profound doubt and depression, Jim never quit. Each time he put on his legs, he did it a little quicker. Each time, he could stand in them a little longer. Each time, his balance was a little surer.

In May, Bill added a few inches of height to the legs, this time with Jim's approval.

He spent three hours in the legs one afternoon. Because it was easier to walk on tile than carpeting, Jim preferred to stay in his kitchen. He baked to fill the time. Buckwheat muffins. By the dozen. He couldn't eat them all, so he stuffed bags of them in his freezer.

Something about moving forward seemed to unnerve Jim. He said he feared that a monomaniacal quest to walk would alienate him from his young daughter.

The few times that Giselle had seen him wearing the legs, Jim had detected fear on her face. You don't look like her father when you're wearing the legs, he thought to himself. You look almost human, and that is as bad as being a monster.

Ivonne didn't think Giselle was bothered at all. Giselle, who was only a little more than 3 years old, liked riding on Jim's lap in his wheelchair. His missing legs didn't upset her. In fact, Giselle was pretty sure that if she poured enough water on them, they would grow back.

* * *

Page 3   Page 5