I’ve found a perfect candidate for my inspirational folders
I recently learned of Peter Frampton's diagnosis of inclusion body myositis
Do you have an ALS “inspiration folder?” I do. And I just added another name to my ever-growing list.
Even though most people in my folder don’t have ALS, what inspires me is that despite their dire circumstances, they dare to have goals and find ways to keep moving forward. Knowing their stories and the challenges they face helps me power through the days when I feel like I’m in an uphill battle with my ALS symptoms.
I was recently enjoying the Rock & Roll Hall of Fame induction ceremony on television when one of the inductees said something that shocked me. The legendary rock singer-songwriter Peter Frampton revealed that he has a degenerative muscle disease called inclusion body myositis (IBM).
As the program continued, I quickly grabbed my tablet and searched for more information about the disease. I learned that, similar to ALS, IBM is a rare disease, and its symptoms typically begin in the limbs. There’s currently no cure. However, unlike ALS, it’s an autoimmune disease and isn’t fatal.
I immediately felt both empathy and sympathy for Frampton as I recalled happy memories of listening to his music during my teenage years. I was sad that his future would be different now.
Later that evening, I read more about his health journey. In 2015, while performing onstage, he fell twice in a month, which prompted him to visit a neurologist. That led to his diagnosis. But the British rocker didn’t share this news publicly until a television interview in 2019 that coincided with a farewell series of concerts.
How is he coping?
Frampton’s weakened leg muscles force him to walk with a cane and perform sitting down. In solidarity, his bandmates are also seated during their performances. He says the change actually makes his concerts feel more intimate to his fans. His hands have weakened as well, but he says he’s found a way to adapt by playing with more soul and by using less complicated fingerings.
Since there’s no cure for IBM and no drugs to treat it, Frampton uses his fame and notoriety to help advance research into the disease. He established the Peter Frampton Myositis Research Fund at Johns Hopkins Medicine with funding from concert ticket and merchandise sales.
I also learned that in addition to practicing on his guitar, Frampton does a one-hour workout six days a week. Wow!
Even though Frampton may have rotated his “Game Board of Life,” as I call it, rather than run away, he’s decided to stay and play on. His upbeat, can-do attitude certainly qualifies him to be added to my list of people who inspire me.
Who inspires you?
I encourage you to take the time to create your own inspiration folder. It’s not about copying what others do, but rather paying attention to how they do it. We all have different life circumstances, so don’t focus on what vitamins they take, which foods they eat, or which particular exercise routine they follow. The important thing is to tap into their determination and passion for life.
I believe that inspiring people are all around us. Let’s use their mindset to help us learn to live well while living with ALS.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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