Living with Duchenne muscular dystrophy (DMD) has taught me countless lessons, especially the power of connection, creativity, and celebrating every form of love. Last Saturday, I attended the 11th annual concert of The Purple Symphony with my girlfriend, Amanda, and my new caregiver, Julie. Titled “Perhaps, It’s Love,”…
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I’m a mother of seven and a caregiver to the three of my sons who have Duchenne muscular dystrophy (DMD). My oldest daughter, Lexi, 24, lives a few hours away with her husband. I live in rural Nebraska with my husband, Jason, and our six youngest children: Max, 19;…
I’m between two anniversaries. Today is the 36th anniversary of the collision I had with a drunk driver that cost me my eyesight and almost cost me my life. Saturday will be my 45th wedding anniversary. The car crash happened on the evening of June 11, 1989. I was returning…
I believe that many adults living with rare diseases can and do become experts in their conditions, sometimes more so than healthcare professionals. With respect to my own journey with limb-girdle muscular dystrophy, this point became particularly clear when I had a near-death experience in early 2024. Several types…
When I think about my son Charlie, I always remember my pregnancy with him. I’d taken a home test and knew I was pregnant, but when I called to make an appointment with my doctor to confirm the good news, I scheduled an appointment for my son Max, who was…
Last Thursday, I participated in a workshop that used experiential theater to examine healthcare conversations. With a sense of anticipation and hope, I stepped into the unknown, eager to gain insights that could enrich my advocacy for Duchenne muscular dystrophy (DMD), which I have. The workshop, held by the…
During a recent facioscapulohumeral muscular dystrophy (FSHD) wellness group meeting via Zoom, we each shared how we were feeling about our disease journey. One participant said, “I feel like I’m always in transition.” I can relate to that. With FSHD, the need to adapt seems never-ending, a topic that…
Once again, I’m writing from an uncomfortable chair in an infusion room as my son Max participates in a clinical trial. I frequently visit this room with my three sons — Max, 19; Rowen, 16; and Charlie, 14 — who live with Duchenne muscular dystrophy (DMD). It’s a…
It’s been a couple of weeks since my last column. I’ve missed writing them. I can never explain how therapeutic it is for me to share my life as a caregiver through writing. I have seven children: Lexi, 24, Max, 19, Chance, 18, Rowen, 16, Charlie, 14, Mary, 10, and…
As a Duchenne muscular dystrophy survivor, I’ve spent much of my life on the outside looking in, especially when it comes to public events like concerts and sporting events. My condition affects not only my ability to move but also my breathing. I rely on a BiPAP…
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- How AI can support my daily life with Duchenne muscular dystrophy
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