CONSTANT CARE
Over time, Jerry Rifkin has become the 24/7 man for his wife, Judy
photography by Fran Collin
But three years ago, when Judy was 64, the couple's life started to fall apart. Judy found that all her shoes felt increasingly tight. "I thought my feet were growing," she explains. Then her hands started to swell. "I didn't think it was anything earth shattering," she says. What finally made her see a doctor was a cold.
When Judy mentioned that she thought she was retaining fluid, her internist, Leslie Levine, ordered a blood test. Results showed elevated antinuclear antibodies, indicating something was wrong with Judy's immune system. A rheumatologist recommended by Dr. Levine diagnosed the problem as Raynaud's Phenomenon, which affects circulation in the blood vessels.
"Her feet and hands were turning red, white and blue because the blood wasn't flowing right," says Jerry. Although they didn't realize it, Raynaud's can be an early indicator of scleroderma, a serious autoimmune rheumatic disease. Another rheumatologist, recommended by a doctor of Jerry's, then said that Judy also had scleroderma, but the Rifkins refused to believe it. "We didn't think he knew what he was talking about," Jerry says.
But Judy soon began to suffer severe itching. "I thought it was my nerves," she explains, "so I began going from psychologist to psychologist, thinking I was nuts."
Upon receiving a referral from a New York-based organization that directs people to appropriate medical help, the Rifkins made an appointment with a New York rheumatologist. They did not tell the New York doctor of the Florida rheumatologist's scleroderma diagnosis, however. The New York physician confirmed that Judy had Raynaud's, but said he saw no evidence yet of scleroderma. He cautioned, however, there was no guarantee Judy wouldn't develop it.
"He told us to go home and enjoy ourselves," Jerry recalls. So they went to Colorado for a vacation. But Judy was up nights, pacing the floor because of constant itching. "It was like pins and needles all over my body," she says. Jerry gave her showers, rubbed cream on her body and sat up nights with her. But nothing alleviated the incessant itching. After two weeks, they gave up and came home. Thinking that the itching might have been caused by the high altitude of Colorado, they tried another vacation. This time they went to New England, but Judy kept getting worse.
Eight months after the first symptoms appeared, Judy's skin began to harden. "From the top of her head to the bottom of her feet, her body was as hard as a piece of wood," describes Jerry, who is 70.
"I couldn't wear clothes," Judy says. "I couldn't stand to have anything touch my body."
The couple went back to the New York rheumatologist. As soon as Judy walked into his office, he said he could tell just by looking at her that she now had scleroderma (Greek for "hard skin"). "She had a very severe case—systemic sclerosis," Jerry confides. "It was aggressive and had taken off like a shot out of hell."
The rheumatologist prescribed D-penicillamine, but it failed to help. In fact, Judy soon was unable to eat. "Jerry would sit beside me, holding a spoon and coaxing me, like to a baby, ‘One more bite,'" she says. Still, her weight plummeted from 160 pounds to 129.
"We went from doctor to doctor," Jerry says. One prescribed medicines the drug store had never heard of, Judy says. When she reported that to that doctor's nurse, Judy was told, "You're always complaining."
A rheumatologist at the University of Pittsburgh Medical Center recommended chemotherapy. But doctors refused to administer it because her hemoglobin level was so low—only seven as compared to a normal reading that should range between 12 and 16. She ended up having five blood transfusions for anemia.
By the time Judy was symptomatic for 13 months, the Rifkins didn't know where to turn next—until they saw a Dr. Fredrick M. Wigley, who is director of Johns Hopkins Scleroderma Center, in Baltimore, on the TV show Today. Impressed by what they heard, the Rifkins managed to get an appointment with Dr. Wigley. But it was February, and Judy balked at going north in the cold weather. "My husband and sister had to drag me up there," she confesses.
Dr. Wigley confirmed that Judy had scleroderma and prescribed a new medication, Cellcept, an immunosuppressant agent. He also put her on Singulair to relieve the itching. He assured them they should start seeing results in about 65 days. The itching ceased "all of a sudden," Jerry says. "And in sixty-eight days, we saw her skin softening."
The word "we" is sprinkled throughout Jerry's statements. As he says, "Every pain Judy has—every itch—I feel is part of me." His supportiveness, Judy adds, is "twenty-four-seven. He drives me, dresses me; he is chauffeur, cook, butler, handyman." Although Jerry had been an avid golfer, playing seven days a week, he no longer plays in order to provide Judy constant care.
"She has deep fibrosis in all her joints, and her fingers curl up," he says, explaining that the wrists, knees and ankles are the last to get better. She gets steroid injections for this. Since it's difficult for Judy to get up and down by herself, they bought a chair that automatically rises and lowers. But Jerry still has to lift her in and out of other chairs and the bed, as well as assist her in the bathroom.
"My life has changed drastically," Judy understates. "I used to be very active, but now, if I walk half a block, everything hurts." As a result, she uses a wheelchair to go most places. Twice a week a physical therapist comes to the apartment, and on two other days an occupational therapist treats her. "We have a very busy schedule," Jerry jokes.
Physical illness can result in depression. "I was itching day and night," she says, confiding that before the symptoms began improving, she didn't want to live. "Judy wants to jump from our building," an alarmed Jerry told Dr. Yvonne Sherrer, another of Judy's physicians. Dr. Sherrer immediately got Judy an appointment with a psychiatrist, who prescribed the antidepressant Remeron. To her amazement, Judy was feeling much better within a couple of days. She continues on the antidepressant.
Jerry's found a different way to cope with the emotional strain. He helps other scleroderma victims who need advice. The Scleroderma News, a publication of the Southeast Florida chapter of the Scleroderma Foundation, runs an ad about him in each issue. "He Really Cares!" it states, recommending that readers contact him.
"You can't imagine how many people call out of desperation," Jerry says. "They're in a barrel, about to go over the falls. My goal is to save people a lot of time and effort by directing them to the right source, where they can find out what form of the disease they have." He's sent some three dozen people to the Johns Hopkins Scleroderma Center.
He and Judy also contribute financially to the JHSC, as do Judy's two sons from her previous marriage, Steven and David Stolberg, who live in nearby Plantation, Florida. "We're also very active raising money for the national Scleroderma Foundation," Jerry says. Judy's two daughters-in-law, Amy and Vicki Stolberg, sponsor fund-raising events for the organization, which does research into the comparatively little-known disease and raises awareness of it. The Scleroderma Foundation estimates that some 300,000 people in the United States have some form of scleroderma, ranging from mild to severe. To date, there's no cure, though there are various treatments that can sometimes help.
Jerry's primary goal is "to make Judy's life the best I can under the circumstances." They see a lot of movies and enjoy going to the mall and sometimes out to eat, though not every night as they used to. "He's a fabulous cook," Judy teases. "Scrambled eggs, cottage cheese and tuna fish."
Their social life has dwindled because, as is not unusual when someone is ill, most of their friends "fell by the wayside. When you're down, people disappear. We lost half our friends," Judy says. Jerry disagrees. "Make that ninety percent," he says.
Judy remembers that the same thing happened when she and her first husband divorced. "That's the way people are. But I've learned to accept it. You can't carry it inside you."
Instead, they focus on the people who have stood by them. "I thank God every day for my unbelievable husband," Judy says. "I never imagined anyone could be so compassionate and caring." She's thankful for her entire family, especially her "fantastic" sister, Joan Gordon, "who calls every day, wheels me around the mall, goes with me to doctors." She's also grateful, Judy adds wryly, for the "ten percent" of real friends.
She and Jerry sing the praises of some "wonderful doctors," such as Dr. Sherrer, Dr. Levine ("She sat with me in emergency rooms," says Judy) and the "doctor of doctors," Dr. Wigley. "It's rare to find a doctor who's caring," Judy says. "If I call him or leave an e-mail, he gets right back to me."
Judy's decided she has two choices. "I can sit and cry, but that's non-productive. Or I can go on with life." Which, for Judy and Jerry Rifkin, means life together.