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 Facing adversity is the acid test of our character. At no time in my life has this been more true than when confronted with the impact of a rare disease called facioscapulohumeral muscular dystrophy (FSHD or FSH). As muscle groups from the face to the feet atrophy, affecting my ability to walk, lift, … Continue reading Bending Focus: Lessons from a Rare Disease
Support Claire A woman on a mobility scooter, her husband on a bike, and their caregiver in a transport vehicle roll into a parking lot of the Grand Canyon when a stranger approaches them and says, "I'm disabled, but you're more disabled than I am. Good for you for seeing the park." (No joke.) The … Continue reading How to Successfully Engage with People with Disabilities
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 This is a spin for the bucket list! With breathtaking vistas of ancient sandstone formations flanked by scented junipers spiring into bright blue Arizona sky – some of the most photographed scenery in the world – this scooter ride is spectacular! Getting There From Phoenix, take the I-17 north, exit 298 onto SR-179 … Continue reading Scootering Sedona’s Red Rock Scenic Byway (Arizona SR 179)
Support Claire McDowell Mountain Road McDowell Mountain Road The longer the pandemic lingers globally, the more my husband Lou and I discover places to spin locally. In doing so in 2021, we came upon a favorite new route: McDowell Mountain Road, a super scenic, eight-mile stretch connecting Fountain Hills to Rio Verde, AZ. Mountainous southwestern … Continue reading Our Favorite Spin of 2021
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
Support Claire Not far from Scottsdale lies a scenic gem of the Tonto National Forest known as Needle Rock Recreation Area. Its sole byway is Needle Rock Road. Pictures don't do justice to the beautiful vistas that unfold along this 3-mile stretch, (though I will certainly post a few). Four Peaks in the … Continue reading Spinning Scenic Needle Rock Rd – Rio Verde, AZ
Support Claire Traveling differently abled has never been better. ADA legislation coupled with ever growing consumer demand has greatly improved the availability of quality accessible travel in the USA and abroad. That said, as someone who travels as often as possible while managing FSH muscular dystrophy, I find that the following measures best ensure successful … Continue reading Top Tips When Booking Accessible Travel
Support Claire Given beautiful weather, my husband and I often head to Peoria's New River Trail for some scenic urban spinning. This popular trail system has it all, including easy accessibility for mobility devices. Getting there Handicap parking and ADA restrooms are readily available at Rio Vista Community Park (8866 W. Thunderbird Road, Peoria). This … Continue reading Scootering New River Trail, Peoria, AZ
Support Claire Caregivers wheeled Luke Hogan Laurenson and me into the Oregon Shakespeare Festival's Angus Bowmer Theater: me with muscular dystrophy to my seat; him with cerebral palsy onto the stage for his role in Hairspray. By the musical's finale - an uptempo collective promise for social progress - we would both be assisted onto … Continue reading How a Musical is Changing Perceptions About Disabilities, Including Mine
Support Claire Mobility is nobility in any form it takes, including riding a mobility scooter. Whether I'm cruising around the block for some fresh air or scootering the biking trails of a national park, I'm happy to be moving on my own accord. Pride Pursuit To that end, my candy apple red Pride Pursuit mobility … Continue reading 10 Top Tips for Buying a Mobility Scooter
Support Claire Disclaimer: This post is not a substitution for professional medical care. Sometimes people undergoing a significant life transition or living with a chronic condition develop anxiety, anxiety that can lead to a panic attack. As someone living with progressive FSH muscular dystrophy, I am one of those people. The good news is that … Continue reading The 10 Best Ways I Keep Anxiety at Bay
Support Claire Despite the ups and downs of this intense life chapter - or maybe because of them - I find my connection with Claire deepening, not knowing that I could give and accept love with such intensity. Over the past two years, my wife has needed, not one but two, kidney stones surgically removed … Continue reading Confessions of a Caregiver, Vol. 4, Adventures in Healing
Support Claire Whether you're dealing with the hardships of a bodily condition or the intrigues of an expanding empire, Catherine the Great was right: "If you feel unhappy, raise your self above unhappiness, and so act that your happiness may be independent of all eventualities." She never said, however, that maintained optimism in difficult circumstances … Continue reading Queen for a Day (with Muscular Dystrophy)