Which one is right for me? by Amy Bekier, San Diego chapter director Amy Bekier No one chooses to use a wheelchair, and many who are still mobile opt for a scooter hoping it’s not the end of their walking life—and to avoid the perceived stigma of using a chair. Once you have crossed the… Read More »
Folding Lightweight Travel Power Wheelchairs
More than a pretty pair of shoes
by Barbara Zehetbauer-Hoehl, Vienna, Austria Three years ago, I developed a symptom called foot drop caused by my FSHD Type 2. The biggest loss, which came with losing my muscles that support my feet, were the pretty shoes that I just wasn’t able to wear anymore. I love dressing up and I love shoes, so… Read More »
COVID-19 Vaccine Q&A
This Q&A is based on the December 9 webinar with Rabi Tawil, MD, and Ghinwa Dumyati, MD, from the University of Rochester Medical Center, and the January 15 webinar hosted by the National Organization of Rare Diseases with Stephen Hahn, MD, FDA commissioner; Peter Marks, MD PhD, director of the FDA’s Center on Biologics Evaluation… Read More »
Embrace your experience
by Lori Brant There were two ways to walk with my walker down the hallway to my condo. The first way kind of went like this: “Man, I am tired. It has been such a long day.” I hate having to concentrate on each and every step. I can’t stand making sure I’m taking my… Read More »
Making the Most of the Holidays
A Gift You Give to Yourself! by Leigh Reynolds, FSHD Society Celebrating the holidays can be emotionally draining for many, but for those with a chronic condition like FSH muscular dystrophy it can be even more so. Add in a year like we’ve had – global pandemic, natural disasters, politics – and it is downright… Read More »