Recommendations. Reflections. Advocacy.
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 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 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 So, let’s start with who I am, and about Claire and myself. I’m Lou, Claire’s husband and life partner, AKA Mr. Turner, Mr. Tucker and Mr. Flip-it (the colorful caregiver monikers to be clarified at a later time). I am 75-years young with Claire being 53-years young. (That’s right, we’re the exact same … Continue reading Confessions of a Caregiver, Vol. 1, First Comes Love
Support Claire You can tell a lot about a city by the way it greets visitors with disabilities. Palm Springs does a good job in this regard at its Visitors Information Center North. Even though you may have sorted your desert paradise accessible vacation online, it’s still worth a twirl to this iconic building (if … Continue reading Palm Springs Visitors Center
Support Claire Making Accessibility Happen Every city wants your business. Let them know what you need and want in order to make that business happen. Here's what I sent to: City of Astoria - Mayor and City Council To the City of Astoria: The Astoria River Trail is a gem. A bit bumpy in places, … Continue reading Astoria River Trail
Support Claire I just didn’t see it coming. I knew since I was 18 that I had FSH muscular dystrophy. But I figured I was one of the lucky ones, able to walk and lift and smile with little difficulty. The thought of ever needing a wheelchair - pssh! - never crossed my mind. At … Continue reading And then the unimaginable happened
Support Claire Making Accessibility Happen Every city wants your business. Let them know what you need and want in order to make that business happen. Here's what I sent to: City of Scottsdale - Mayor and City CouncilScottsdale City Hall, 3939 N Drinkwater Blvd, Scottsdale, AZ 85251 City of Scottsdale, Clean and scenic, indeed! And … Continue reading Rolling Right Along in Accessible Scottsdale
Support Claire Making Accessibility Happen Accessible travel for the disabled is becoming big business. Speak with your dollars, your vote, and your voice to let commerce know what's working, and what's not. Here's what I emailed to: Sunnylands 37977 Bob Hope DriveRancho Mirage, CA 92270Phone (760) 202 2222 Copy to: Rancho Mirage Chamber of Commerce, … Continue reading Lovely, Accessible Sunnylands
Support Claire My husband and I were delighted and impressed by Superintendent, David Smith's response to our visitor comments regarding accessibility at Joshua Tree National Park. Check it out: Dear Ms. Szabo-Cassella, Thank you for taking the time to reach out to me about your recent experience at the park. Although I am always grateful … Continue reading Joshua Tree National Park Plans ADA Upgrade
Support Claire Greetings, City Manager of Palm Springs, David Ready, This winter marks our third time to Palm Springs as snowbirds. The warm California sun is helpful for the physical and emotional aspects of living with muscular dystrophy, a neuromuscular condition that has impacted my strength and mobility. There are several places in the valley … Continue reading Ruth Hardy Park: ADA Action Request
Support Claire Of all the things there are to see and do in beautiful Palm Springs, Ruth Hardy Park is fabulous place to start spinning your mobility device wheels. When in town, my husband and I go to the park almost daily, as do a copious number of dedicated dog walkers (more on that social phenomena in … Continue reading Ruth Hardy Park
Support Claire Making Accessibility Happen Every national park has a visitor comment form that you can pick up at the guard station or sometimes e-mail online. Sharing your experiences - positive or negative - makes a difference. Here's what I sent to: Superintendent, Chris Lehnertz P.O. Box 129 Grand Canyon, AZ 86023 My sincere thanks … Continue reading Seeing the Grand Canyon by Scooter
NOW SHOWING...Red Scooter Diaries, the documentary. View here: Support Claire Actively engaging with the world is essential for body and soul. Mine anyway. As someone living with FSH muscular dystrophy, getting out of the house, out of my head and into the world is as life-sustaining as breathing good, fresh air. Here's the rub: Mother … Continue reading Going Places
Support Claire Making Accessibility Happen Every national park has a visitor comment form that you can pick up at the guard station or e-mail online. Sharing your experiences - positive or negative - makes a difference. Here's what I sent to jotr_info@nps.gov Greetings, Superintendent of beautiful Joshua Tree National Park, Suggestions: As someone living with … Continue reading Joshua Tree National Park