This was originally published in the Johns Hopkins Division of Rheumatology magazine LEAP.
After all these years, legendary British rock musician Peter Frampton sounds just as good as ever. In fact (although he might disagree), to those who have seen him live recently or listened to some of his newer recordings, this beloved guitarist sounds even better than back in the days of his landmark 1976 album, Frampton Comes Alive!, or Fingerprints, for which he won a Grammy Award in 2006.
This is remarkable because Frampton has inclusion body myositis (IBM), an autoimmune disease that affects his muscles. Although he has experienced some weakness and loss of function in larger muscles, his fingers still work great.
Frampton’s finger dexterity was not at all what his doctor, rheumatologist Lisa Christopher-Stine, director of the Johns Hopkins Myositis Center, expected to find before his first appointment with her. Neither was Frampton himself.
Christopher-Stine says she wondered if he would be one of those high maintenance, dark sunglasses-wearing celebrities. He wasn’t. “He didn’t have an entourage,” she says. “He’s just a very down-to-earth, lovely person.”
Frampton is also consistently upbeat, with a can-do attitude, great sense of humor and a hearty laugh. He has IBM, but IBM doesn’t have him.
“Sure, I have my darker moments,” Frampton says. “But I have so much to be thankful for. We all have our battles. This is mine, but everybody has something. You walk down the street, and you’ve no idea what the person who just passed you is going through. This has opened me up to be more empathetic about other people’s battles. Yes, mine is serious, but there are many worse ones out there.”
Patient and Teacher
IBM is not the same in every patient, Christopher-Stine notes, “and it’s unclear why certain muscle groups are targeted more than others.” The finger flexor muscles are often affected by IBM, and before that first visit, Christopher-Stine’s immediate concern was how badly affected they would be for the renowned guitarist. She was in for a surprise. Frampton’s finger dexterity, built over decades of performance and disciplined practice, was extraordinarily well preserved, she says.
“I have noticed some changes,” says Frampton. “They’re small. I am very, very slowly losing power in my hands, so that’s a little disturbing. But so far, because I’ve been playing all my life, as soon as I take up a guitar, they tend to know what to do.”
Because of Peter Frampton, Christopher-Stine has changed her advice for patients with IBM. “In many ways, he’s been a teacher as much as a patient,” she says. “He taught me how important exercise and recurrent use of one’s fingers are. Remarkably, his left hand, which plays the frets, is even stronger than his right hand, which is his dominant hand! I started recommending to other patients to get a guitar or piano — just start playing. I don’t know that we can undo damage that was already there, and it is unlikely that people who don’t play at that high level would get the same benefit. But he has proved that there is a benefit in isolating our finger flexors individually. Most people don’t do that. We tend to concentrate on grip testing and strengthening rather than on individual finger muscles.”
Exercise is Nonnegotiable
In addition to playing guitar, Frampton does a one-hour exercise workout six days per week. Even the pandemic and gym shutdowns haven’t stopped him. “I’m very lucky. I do not have the swallowing problem” that patients with IBM can have, he says. With the help of a personal trainer (online during the pandemic), he exercises “every muscle that is affected” — in his case, “the muscles in the legs, the arms and the hands. We mix it up: legs and core, then core and arms another day, so it’s always different.
“I am aware of the very slow decline. Stairs are a real problem for me. We concentrate on fall prevention — that’s the way I found out I had this, the reason I went to a neurologist in the first place. I fell twice on stage within a month. I had no idea what was going on. I knew I was losing power in my legs, but I really didn’t have a clue as to what was going on. I actually thought my tight jeans were impeding my walking! The mind is a terrible thing!”
That was six years ago. During a 10-day break in his concert schedule, Frampton saw a neurologist, who narrowed down the diagnosis to two possibilities. “He didn’t tell me until after he’d diagnosed me with IBM that the first one on his list was ALS (amyotrophic lateral sclerosis, also called Lou Gehrig's disease). Because it is so slow moving, IBM is hard to diagnose.”
And because it is pretty rare, affecting maybe eight out of every 1 million Americans, IBM has not garnered huge research funding. Neither has it been a big focus of drug development by pharmaceutical companies. Frampton is doing his best to change this, establishing the Peter Frampton Myositis Research Fund at Johns Hopkins to raise money for research.
In February 2019, he appeared on the TV show CBS This Morning to announce the fund and his 51-date U.S. farewell tour. “Each promotor donated a dollar from every ticket sale,” he says. “The Shriners teamed up with us,” selling copies of Frampton’s 2019 CD, All Blues. “I didn’t see any money from that CD. Half the profit went to the Shriners, and half of it went to my fund at Johns Hopkins.” So far, the tour and CD sales have raised close to $300,000.
“The promotors had to do this themselves,” Frampton says. “They had to work out how many people were there, they had to write a check after every one of my concerts in different places, and they all sent in the money. In fact, in a couple places, they gave a huge check on top of that. People were just so behind the fund and doing as much as possible.”
‘Symbol of Hope’
Since going public with his diagnosis, “he’s become a symbol of hope,” says Christopher-Stine, who gets calls and letters from patients saying that Frampton has inspired them. He makes time to talk to “other IBMers,” on the road and online. During the farewell tour, “I would do a VIP meet and greet at the end of each concert, usually about 40 to 50 people,” he says, “and if there were any IBMers, we left them until last, so I could spend more time with them.” He remembers one couple in particular:
“They didn’t say that he had IBM, they didn’t wait until the end, so we didn’t know. So I’m standing in between them, and I’m signing their stuff and getting ready to take a picture, and the wife says, ‘You diagnosed my husband.’ I said, ‘Excuse me?’ He was very quietly spoken, and he said, ‘I had been to I don’t know how many doctors. Nobody knew what I had, and nobody could help me. I watched you on CBS, and everything you said, all your symptoms, I ticked them off one at a time. I just yelled at my wife, ‘Hey, come in here! Frampton just diagnosed me! I’ve got IBM!’ He went to a neurologist, because that’s what I said to do, if you’ve any weakness in your leg muscles and no clue what it is.”
Frampton asked the man if he was exercising, and the answer was, “Every day.”
“There was proof that I had actually helped someone by talking about it on TV,” Frampton says.
Christopher-Stine says of Frampton, “I feel so fortunate to know him. He is truly a remarkable human being.” Frampton says his positive attitude is inherited: “My kids say to me, ‘Dad, how come it’s always the little, tiny things that really bother you? When something big happens, good or bad, you take it in your stride.’ I don’t know, but I’m the problem solving optimist of the family. I got that from my parents. I was born five years after my dad came back from Germany in the second world war. I learnt so much from their stories.” His father fought in Europe and Africa. His mother survived the London Blitz. Over time, “She got fed up with going to the bomb shelter in the basement, so she just stood out on the balcony and watched the bombs come down. Every day, they woke up and didn’t know if it would be their last.”
They were glad to be alive, and so is Frampton. “I just feel like, if I’m the face of IBM, then I think you’ve got the right person, because I never give up!”