HINGHAM — Randy Pipkin and Mark Malinowski met 10 years ago, and in 2006 they got married. They loved each other, their jobs, and their apartment on the Upper West Side of Manhattan. They traveled, to Italy, Ecuador, and Mexico.
Pipkin was passionate about his job marketing perfumes for Elizabeth Arden, Calvin Klein, and Estee Lauder, including the launch of Mariah Carey’s first fragrance, “M.”
Life couldn’t get any better.
But in 2005, Pipkin noticed a slight twitching in his index finger and weakness in his hand. He didn’t think much of it but went to a neurologist, who told him: “I believe you have amyotrophic lateral sclerosis.”
“What’s that?” Pipkin asked.
“You probably know it as Lou Gehrig’s disease,” said the doctor. “You probably have two to five years to live. I know someone who is doing research, and he may want you to donate your brain.”
People like this guy should practice yoga, not medicine.
ALS is an incurable neurodegenerative disease that leads to paralysis and death. Though the body is attacked, the mind remains untouched. The average lifespan after diagnosis is two to five years. Former governor Paul Cellucci recently died five years after his ALS diagnosis.
Randy Pipkin was 33 years old, a muscular Tom Brady look-alike who felt as healthy as an NFL quarterback. The couple went to another doctor who gave Pipkin a diagnosis of multifocal motor neuropathy, which is rarely fatal.
“We were thrilled,” says Malinowski. Pipkin was put on a drug, and for a year and a half, lived a pretty normal life. Then, in 2007, he began stumbling. In France, he fell down a staircase. He fell on a street in Manhattan. After a workout, he fell and broke his collarbone.
From another doctor, he got a second ALS diagnosis. Through extensive online research, the couple found Dr. Robert Brown at UMass Memorial Medical Center. Brown is a leading ALS clinician and researcher.
In early 2008, Pipkin and Malinowski left New York and moved to the Boston area, to be close to Brown. They bought a lovely home in Hingham and installed a ramp out back. Malinowski, who grew up in Central Massachusetts, had graduated from Emerson College. Pipkin grew up in Houston and graduated with honors from the University of Texas with degrees in international business and Spanish.
When they met Brown, they knew they’d made the right move. “We loved him,” says Malinowski. “We felt much better about the medical care here.”
Brown started Pipkin on a clinical trial, but by 2009 he was using a walker. The men decided to take a break from conventional Western medicine. They went to Mexico twice for alternative treatments. They rented a hyperbaric chamber. With Pipkin losing weight, and mobility, they finally yielded to the diagnosis, and last fall he was accepted for tests and trials by the grandfather of American medicine, the National Institutes of Health.
Sitting in their sunny living room, the couple describe their life today. Malinowski does most of the talking, but Pipkin can still speak, slowly, softly, taking breaths between words.
He’s 41 now, Malinowski 49. They wear wedding bands and look at each other tenderly, Malinowski putting his arm around Pipkin’s thin shoulders, patting his hand, holding up a cup of water with a straw for him. “He’s the love of my life,” Malinowski says.
There’s a port in Pipkin’s chest that delivers antibiotics and fluids. The couple enlisted electrical engineering graduate students at UMass Lowell to build a robotic arm that helps feed Pipkin, who can no longer move his arms and hands. A trainer comes in to stretch his muscles. Pipkin is trying to put on weight.
“We want to keep him as healthy as possible, so if there is a breakthrough, Randy is going to be here to see it,” Malinowski says. He does most of Pipkin’s personal care, wheels him around the block, takes him out on the patio to sit, or in the car for rides. They go to movies and concerts.
A computer whiz, Pipkin designed headgear with a pointer attached to it, and sits in front of his iPad, able to type with the pointer.
“As we’ve all come to realize this is ALS, which has taken us a few years to accept, you just rally behind it,” says Malinowski. “But we still feel Randy’s case is different. He shouldn’t be alive. It’s eight years now.”
Malinowski, who works in marketing and public relations, hired a couple of caregivers to help him with Pipkin, whose parents, Gail and Jim, come from Houston and stay for extended periods to help.
“We were all in denial, hoping it was anything but ALS,” says Gail Pipkin during a recent visit to Hingham. “Randy did go through every avenue he could possibly think of. He tried it all.”
Her son agrees. “The takeaway,” Pipkin says slowly, as Malinowski repeats the words for a visitor, “is that you need to advocate for yourself. Get organized and treat it like a job.”
Because of his “brave spirit,” according to the nonprofit ALS Therapy Alliance, Pipkin was named national chairman of the group’s Breakthrough ALS campaign. He appears with Dr. Brown on public service announcements that run in various television markets and online (www.breakthroughals.org).
Over the past decade, the alliance has worked with CVS to raise more than $30 million to fund ALS research. Brown is now researching gene silencing therapy, which could stop mutated genes that may be a cause of ALS.
“Randy is a fighter who is showing people through his actions and brave spirit that we all need to rally awareness, funds, and hope to break through and end ALS,” said Brown, who is president of the ALS Therapy Alliance.
A year ago, the couple says, they wouldn’t have been so public with their story. “This is like coming out again,” says Pipkin. But they have faith in Brown’s research, and hope an answer is getting closer.
“You don’t have to treat ALS like a death sentence,” he says. “You have to really fight and stay positive, and that does wonders. I think that’s why I’m still here.” He’s out of breath, but smiling.Bella Englishlives in Milton. Shecan be reached at firstname.lastname@example.org.