Recommendations. Reflections. Advocacy.
Nestled in the burgeoning college town of Cedar City, Utah, lies two gems of accessible leisure travel: Cedar Breaks National Monument and the Utah Shakespeare Festival. Limited mobility is not a problem at either venue, and there's every reason to go. In July 2023, my husband Lou and I, together with our caregiver Josh, took … Continue reading Accessible Plays and Stays in Cedar City, Utah
Car-hiking at its best! Seriously. If your soul longs to be immersed in mile upon mile of spectacular scenery, head to Moab, Utah (preferably April through October). There's plenty of accessible adventure for people of all mobility levels. Moab, Utah is a lovely and convenient home base to Arches National Park, Canyonlands National Park, Scenic … Continue reading Accessible Adventure In and Around Moab, Utah (Scooter Not Required)
Hoodoo Moab offers excellent accessibility lodgings with a touch of luxury - with one glaring exception, which I will get to momentarily. Conveniently located near Moab's many natural attractions, this hotel makes for an enjoyable and relaxing vacay for travelers with accessibility requirements, travelers like us. My husband and I, along with our caregiver, recently … Continue reading Accessibility at Hoodoo Moab, Curio Collection by Hilton
Read the full 2023, Issue 2 of The FSHD Advocate. Article appears on page 15. Watch Documentary Donate
Donate Aqua Therapy with Aquaman and Friends As is the case with many folks with compromised mobility, the pool is a happy, healing place for me. Below you will find a series of video YouTube shorts highlighting key exercises that my husband (a.k.a. Aquaman) and I do in our neighborhood pool three or four times … Continue reading Video Shorts: Aqua Therapy for Muscular Dystrophy
Support Claire Managing the physical and emotional strains of a chronic condition can be challenging, sometimes in the extreme. Anything that alleviates tension and pain while improving functionality is a welcomed godsend bordering on the miraculous. I speak from experience. As someone living with advanced facioscapulohumeral dystrophy (FSHD), I have tried everything to retard and … Continue reading Get Thee to a Dispensary: Managing Muscular Dystrophy with Medical Marijuana
Support Claire The quality of mercy is not strain'd. It droppeth as the gentle rain from heaven Upon the place beneath. It is twice blest: It blesseth him that gives, and him that takes. Shakespeare Whether you are a caregiver or in need of one, navigating the art of caregiving can be tricky. This article … Continue reading Let’s Talk About Caregiving (and Muscular Dystrophy)
Support Claire …The new dawn blooms as we free itFor there is always lightIf only we’re brave enough to see itIf only we’re brave enough to be it --Amanda Gorman, US Youth Poet Laureate All the signs were there: a weakening grip, shaky fingers, gnarling knuckles, random palsy…After five years of limited arm and leg … Continue reading Managing Muscular Dystrophy with Technology