Events this May!
By Jayne Krusman
I’ve always loved volunteering and helping others. That part of me hasn’t changed, even as my life has slowly shifted with the progression of inclusion body myositis (IBM). Looking back, my earliest symptoms were tripping and swallowing difficulties—small red flags that, at the time, I couldn’t yet make sense of.
By 2010, my fear of falling was constant. I used a cane at first, then leg braces when drop foot made walking harder. Eventually I began falling backward, which led to more head bumps than I can count and four concussions. Somehow, through eleven falls over ten years, I never once broke a bone—just lots of bumps and bruises. Wanting to protect myself and my family from the fear of a devastating fall, I made the decision to start wearing a helmet. Between the helmet, the leg braces, and my rollator, I must have been quite a sight in the summertime, but safety won out over vanity.
By 2016, chairs of regular height became a real challenge. I tore my rotator cuff simply from trying to push myself up. My poor husband tried lifting me “by the seat of my pants,” but that only gave him back and arm problems. Eventually, I transitioned into a complex power wheelchair—a change that saved me enormous energy and helped me stay much more relaxed throughout the day. I still have to be cautious every time I transfer, though; one wrong move and my legs might give out.
My days look nothing like they used to. Everything takes longer. Everything requires planning. It’s a good thing I’m retired, because I now do everything at my own pace. Some days I have my routines; other days, nothing is routine at all. I’ve learned to meet each day with flexibility and humor. Through all of this, my husband, daughters, friends, and neighbors have been my lifeline. They help whenever I need it, and I am deeply grateful for them.
I was officially diagnosed in 2013, but specialists at Johns Hopkins believe my symptoms began as early as 2000–2002. My swallowing issues date back to 2002. My husband performed the Heimlich maneuver on me five times between 2005 and 2010. I’ve been through countless tests—barium swallows, balloon procedures—and eventually had a cricopharyngeal myotomy at Johns Hopkins. I was fortunate to work with Dr. Thomas Lloyd for many years before building a more local care team in Bethlehem, Pennsylvania. Of course, as many of us IBMers know, treatment options are limited, but I do feel very well supported.
TMA was my first support organization and truly a lifesaver. Their support groups, classes, and conferences gave me knowledge and community when I needed it most. Early on, I researched everything I could about IBM. Since many doctors had never seen a case, I printed articles and brought them to appointments, always offering them kindly so no one felt offended. I wanted to spread awareness—and it worked.
My advocacy grew from there. I partnered with Moravian University’s Rehabilitation Sciences graduate program, just minutes from my home. I became a learning partner for their OT students, serving as a practice patient. One student even created a 3D‑printed tool to help me open my washer and dryer. I also met with speech therapy students to teach them about devices for swallowing and respiratory support. Before long, we formed a partnership between Moravian and Kirkland Village, the retirement community where I live. Now, dozens of students work with residents here in meaningful, uplifting ways. Being part of that connection brings me so much joy.
Living at Kirkland Village has been essential for my mental health. I stay involved in committees, serve as chair of Housekeeping and Maintenance, enjoy dinners with friends, and spend time making greeting cards—a hobby that strengthens my hands, brightens others’ days, and keeps me mindful of my blessings.
Independence has always been important to me. I still do as much as I can by myself. My husband offers help constantly, and I usually say, “No, thank you”—but when I do need help, I’ve learned to ask.
From the day I was diagnosed, I knew I had a choice: I could feel sorry for myself and make life miserable for everyone around me, or I could put my faith in something greater, embrace life however it looked, and make the most of each day I’m given. I chose the second path.
I’ve learned to accept my limitations, adapt to challenges, and anticipate what I will need to stay safe and independent. Staying socially and emotionally connected has kept me grounded. And being my own advocate—speaking up, learning, educating others—has empowered me.
IBM may shape my days, but it does not define my spirit. I’m still here, still active, still learning, still helping others whenever I can. And I’m grateful for every moment.
Please make a gift today to help TMA support and encourage people like Jayne.
Your generosity makes all the difference this Myositis Awareness Month!
