Written by Trisha Lynn Sprayberry Las Vegas, Nevada My adventure began late Wednesday night, November 9, 2016. My fiancé, Erin, had dropped me off at the airport. With my suitcase… Read More »
My Boston Adventure: traveling solo with my wheelchair
Accessibility hacks, mobility aids, and tips (Part 2 of 3)
Written by Paul Shay Groton, Massachusetts Grab Bars. In conjunction with my half-steps, we added a conventional grab bar in the doorway to our garage. My wife came up with the… Read More »
Mom and Daughter with FSHD featured in Muscular Dystrophy News!
Two of our members, Diane and Lexi Pappas, were featured in Muscular Dystrophy News, sharing their struggles about living with FSHD. Diane is Lexi’s mother and the two live in… Read More »
Accessibility hacks, mobility aids, and tips (Part 1 of 3)
Written by Paul Shay Groton, Massachusetts I am one of the lucky, late-onset FSHers: diagnosed at age 57, now 71. As my progression has been relatively slow over those 14 years,… Read More »
Imaging study shows positive effects of exercise and CBT on muscle degeneration
In 2014, a Dutch team reported that aerobic exercise training (AET) and cognitive behavioral therapy (CBT) decreased fatigue and improved the quality of life significantly in FSHD patients. Now, the… Read More »