It was still dark when nurses at Good Samaritan Hospital in Los Angeles roused Jim Fitz from his sleep last November. As the hospital began to hum with activity, they wheeled him into pre-op, where doctors administered anesthesia and screwed a circular metal brace into his head. It was his big day.
There was no particular sense of drama, Fitz recalls, even though the neurotransplantation surgery he was about to undergo on his brain could change his life forever. Change was what he wanted. Relief from the debilitating symptoms of Huntington's disease was what he craved. The promise of a few more years, better years, made it difficult to see the potential for disaster.
"I wasn't nervous. I just wanted to get the show on the road," he recalled one recent rain-soaked afternoon. Either he'd get better, he decided, or he wouldn't. The surgery, used primarily for Parkinson's patients, still is experimental. It involves harvesting brain cells from aborted fetuses, taking a nerve from the patient's foot, mincing it and mixing it together with the fetal tissue. Then, in a delicate hours-long surgery, damaged parts of the patient's brain are removed and the fetal cell mixture is grafted onto the brain.
"I don't think we fully appreciated the risks until we got there, until after the surgery," explained Jim's companion, Gail Molloy. "Until we saw what happened to the Parkinson's patient before Jim. He had a stroke. "They tell you there is a risk of stroke," Molloy continued, "but it never occurs to you with so few patients undergoing the surgery, even a small percentage is significant. Jim was only the 10th Huntington's patient to have the surgery."
Jim, 47, and his brother, Sam, 57, who had the surgery in early December, were lucky. Not only did they survive the surgery without a stroke, they're experiencing dramatic improvement. "I tell you, it just boggles the mind," Sam said recently, grinning. "It's like a miracle." Improvement in both men is so impressive, it's hard to remember that the surgery isn't a cure. There is no cure.
"Immediately after surgery, when he was coming out of the anesthetic, he was combative and talking," Molloy said, "but it was clear from what he was saying that the improvement was just tremendous." While results are dramatic right away, she said, it doesn't stay. There are ups and downs. "It's just the way things go," she said. "Some days are good, others not as good. He's definitely better, but we don't really know what the prognosis is. It's a game of wait and see. And it's different for each patient. With so few people undergoing the surgery, there's no way to tell what the future really holds."
Both men underwent physical, occupational and speech therapy at Good Samaritan for nearly two weeks after the surgery. Now that they're home, the therapy continues in the form of exercises - both for the body and the brain. Jim walks around their cabin at Panther Lake and is supposed to be doing crossword puzzles to improve his brain functions.
"You have to be repetitive," Molloy said. "These new cells have to learn what they have to do. The wife or significant other turns into a nag, but if that's what it takes, that's what I'll be. The weather has made it difficult for him to get into a routine and he needs too." Jim's progress, however, is obvious. Before the surgery, he found it difficult to to process questions or form coherent answers. He's now able to converse with visitors and when a guest searches for the right word, Jim easily comes up with the right one.
The Huntington's, which they inherited from their father, is a debilitating neurological disorder that attacks the brain, robbing them of muscle control and eventually speech and the power to think. While Sam's ability to think was less impaired than Jim's, he exhibited slurred speech and involuntary muscle spasms that gave him an unsteady gait and jerky movements.
"Look at this now," Sam said, sticking out his foot. Not a tremor in sight. The foot also is straight, not turning outward as it once was. His speech still bears slight traces of slurring, but is remarkably clear. "It was a pretty good tune up," Sam joked. "The only after effect is the incision on my foot still is a little tender."
Huntington's also is characterized by reflexive swallowing, something that still plagues Sam. "But I'll get better," he said confidently. "They tell us the fetal brain cells continue to grow for nine months, just like they do when you're pregnant. So there will be more changes along the way."
Both men now take cyclosporine, an anti-rejection medication. At first they had to wear masks at home and their visitors were limited to protect them from germs. "My body feels like it belongs to me again," Sam said. "Before it felt like a big shaky bowl of jelly. I couldn't control it. I couldn't stick my tongue out. I'm starting to feel like myself again." To exercise, Sam does the stairs at his mother's Marine Drive home, where he and his wife, Eileen, are living temporarily. His mother, Bertha Dinsmore, has been diagnosed with Alzheimer's disease, another blow to the family.
"I'm going to go back to work in February," Sam said, "and I can hardly wait to try driving again. I really miss driving." The couple owns the Bridgetender Restaurant in East Bremerton. Despite his disabilities, Sam continued to go to work until just a few weeks prior to surgery. "Life seems good again," Sam said. "I can see a future with no wheelchair."
Molloy said when they arrived at Good Samaritan, she realized for the first time that Jim and Sam were very much in the early stages of the disease compared to the patients who had gone before them. "Some were there for check ups and you get close really fast," she said. "Their disease had progressed so much further than with either Jim or Sam." Many also were younger, she said. One Huntington's patient was in his 30s with a wife and two young children. He suffered a stroke after the surgery and now is concentrating on recovering from it.
"It's very frightening when you realize what can happen," Molloy said. "We didn't realize they were going to operate on another patient the day of Jim's surgery. They use different parts of the fetal tissue on Parkinson's patients, so they were sharing the fetal tissue." The man was 66, Molloy said, and not really exhibiting severe symptoms of the disease yet. He wanted to catch it early. "I had a gut feeling something was wrong," Molloy said, "and then he just wasn't waking up like he should. He'd suffered a stroke." She's kept in touch with spouses, she said, "because it's a small world. There are only a handful of us and it helps to talk to someone who knows what you're going through."
Molloy, who knew Jim in high school, hadn't seen him for years. He already was well into the Huntington's when they met again two years ago and eventually began living together. "I knew what I was getting into," she said. "This wasn't something I rushed into. I'm thrilled he had the surgery because I want a few more good years for him. But this life is not without frustration and my life has changed immeasurably. We have a long road ahead. This isn't a magical cure. But we'll make it." With that Jim reaches out and squeezes her hand.
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