In May of 2013, our otherwise healthy 26-year-old daughter Jess (she’d recently hiked 2,200 miles on the Appalachian Trail) started feeling some tingling and numbness in her hands and feet. Within three days she had trouble walking, and was in terrible pain. The diagnosis was Guillain-Barre Syndrome (GBS), a rare, paralyzing nerve disorder. Doctors told us one in three GBS patients becomes totally paralyzed, and ends up on a breathing tube in intensive care. Some die. There is no cure. Jess entered the hospital for treatment to slow down the progression of the paralysis.
My fear went beyond her diagnosis. After a long hospitalization, my father had died in 2006 of complications from a hospital-acquired C. diff infection, unrelated to the neck injury that first brought him there. I’d learned how quickly things can go wrong, even in the best hospitals. It’s what had started me on a path to answer the question what can families do to help? This was top of mind as we stayed by Jess’ side around the clock, tracking how medications were working, asking questions, taking notes, following up when there were disconnects, and soothing Jess’ spirit. We shared decisions and helped the medical team with her diet, supplements, physical therapy and pain management. My wonderful patient advocate colleagues from around the world weighed in with research, advice and support. We were all acting as a team, with everyone bringing their A-game. Thankfully Jess had an astonishing and complete recovery, defying predictions it would take six months to a year. We are grateful beyond words.
Outcomes can’t always be helped. But no one should feel powerless and alone. This experience left me wanting everyone to have the knowledge to partner with caregivers, and feel part of a community who’ll share their experience, wisdom and support.