Bill’s Story

On a brisk February afternoon, Bill’s gregarious smile and inviting nature bring warmth to the chilly wind that blows across West Roxbury, Massachusetts. His easygoing nature draws people to him and the way he talks—using his hands and exaggerated facial expressions—makes him a compelling and captivating storyteller. His eyes sparkle when he speaks of his four adult children, raised in the same home where he still lives with his wife, Barbara, and dog, Bo. Bill has lived many lives. He worked at the Massachusetts Bay Transportation Authority (MBTA) for 23 years, starting out as an electrician and working his way up to an engineer, directing the power division. Other highlights in his career include serving as a facility engineer for plumbers, electricians and millwrights for the city’s famous Big Dig, and for the Massachusetts Turnpike Authority. “Never ask me to tell you about my life,” says Bill, chuckling. “I could give you my book!”

Bill never expected that his book would include a battling a rare form of skin cancer, or later receiving a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS), a severe neuromuscular disease that causes debilitating, progressive muscle weakness and fatigue. For Bill, an energetic man with a zest for life, the immobilizing effects of LEMS proved just as challenging as his battle with cancer.

 

A Difficult Diagnosis

Bill’s medical journey began during a 2008 trip to Ireland when, after performing in a bagpipe band (he had been a drum major of the 27th Lancers Bugle Corps in his youth), he discovered a seemingly innocuous blemish while changing out of his kilt. “It looked like a pimple and I ignored it,” says Bill. A similar, though more pronounced, marble-sized bump appeared shortly after, which prompted him to see his primary care physician who swiftly ordered a biopsy. “I’d never been sick a day in my life, then my doc said, ‘Bill prepare yourself, it might be lymphoma.’” The diagnosis was Merkel cell carcinoma, a rare form of skin cancer known to spread quickly through the lymphatic system. Bill was told that he had a year to live, even with treatment. “They threw the kitchen sink at me—chemo, radiation—nothing worked.” Still, committed to taking care of his family, Bill continued to work every day. “All I dreamed of was dancing with my daughter on her wedding night. That kept me going.”

 

Spirituality and Healing

Bill wanted to fight, but he didn’t know how. Then a childhood friend suggested an alternative. He wanted Bill to meet a local businessman and, coincidentally, a former high school classmate of Bill’s, who had miraculously survived metastatic renal cell

carcinoma after taking a spiritual pilgrimage. After spending hours talking with his old friend, Bill decided he would follow his advice and travel to Medjugorje—a town in Bosnia and Herzegovina where the Virgin Mary reportedly appeared on Apparition Hill in 1981. “I was dying—going on a pilgrimage wasn’t going to make any of that worse.”

 

With a sense of adventure and a hopeful spirit, Bill, along with a cousin and his brother-in-law, traveled to meet with a visionary in Medjugorje and attend Catholic services. The three men stayed for 10 days, praying the rosary amongst priests, nuns, and other pilgrims. A month after

his return, Bill requested another scan and the next day he received a surprise phone call from his lead dermatologist. In a state of profound disbelief, she told Bill that the scan revealed something miraculous: his body was 96% clear of cancer.

 

Following his recovery, Bill’s view of life changed drastically. “I’m only 50 percent the man that I used to be physically, but I’m 150 percent the person that I was spiritually. I am a better person. I treat people better. I treat people with empathy.” During what he thought would be his last months to live, Bill began to feel healthy again. But not for long.

 

Living with LEMS

Although his cancer was in remission, he started experiencing new symptoms: slurred speech and muscle weakness. While playing basketball with his son one day, Bill noticed that his arms and legs were very weak. He went inside to rest, but then struggled to get up from the couch. The next day he went to throw a baseball, but the ball only traveled a few feet. He researched his symptoms online and found a syndrome he had never heard of, LEMS. LEMS causes muscle weakness throughout the body, often beginning with muscles in the limbs, followed by muscles in the throat and face. Neurological symptoms can include difficulty speaking and swallowing. Bill says, “I looked up the symptoms of LEMS and I was like… yup, yup, yup, yup.”

 

He called his doctor and told her he thought he had LEMS, but the doctor was doubtful that something so rare could be Bill’s diagnosis. “No!” she said. “Impossible.” But she sent him to a neurologist to cover all the bases. Blood tests confirmed Bill’s hunch was accurate. “I thought I was a goner,” he says. With limited strength in his arms and legs and slurred speech, he felt disoriented and almost inebriated. Periods in intensive care and procedures to filter his blood did little to help. Finally, a course of medications started to get results. “I was starting to feel better. It felt like I was less foggy.”

 

Still, the indirect side effects of LEMS were debilitating: the weakness brought a sedentary lifestyle, and, with that, substantial weight gain. Being lethargic and immobile was foreign to Bill. He had always been on the go. He wasn’t himself. His speech deteriorated further. “I was struggling to speak. There were days I couldn’t form words. People started treating me differently. People talk down to you if you have slurred speech. They assume you are drunk and lose all respect for you.” Then came another setback: Medicaid refused to continue paying for his medication because it was still an investigational medicine. Fortunately, the National

Organization for Rare Disorders (NORD) paid for Bill to travel to Los Angeles and participate in a clinical trial sponsored by Catalyst Pharmaceuticals.

 

Today, Bill focuses on being grateful for what that opportunity has provided him. Like the healing that happened following his trip to Medjugorje, he was able to get his life back and achieve his dream of attending his daughter’s wedding. “The chance for me to walk my daughter down the aisle and even dance with her on her wedding day after all I have gone through – that was amazing. You should have seen us, I was spinning her like Fred Astaire.”

 

Update: As of November 2018, amifampridine is the only evidence-based, FDA-approved treatment for adult patients with Lambert-Eaton Myasthenic Syndrome (LEMS).