Tag: caregiver

6 Accessible Car Adventures Around Phoenix – Scottsdale (Scooter Not Required)

Adventurers of all mobility levels can enjoy the natural beauty surrounding the Phoenix - Scottsdale area from the comfort of a car seat on these six car-hikes. (Yes, car-hiking is a real and meaningful activity.) As someone living with an advanced medical condition, car-hiking around the expansive, desert terrain is a meditation on resilience. Extreme … Continue reading 6 Accessible Car Adventures Around Phoenix – Scottsdale (Scooter Not Required) →

Simple Tips for Keeping the Holidays Merry and Bright While Living with Muscular Dystrophy

Lights! Family! Holiday action! Yep, it's that time of year again. To keep your holiday season sane and enjoyable while living with muscular dystrophy or a similar condition, here are some best practices gathered from our community. Pace yourself Living with a challenging condition often necessitates greater self-knowledge of how much and how long you … Continue reading Simple Tips for Keeping the Holidays Merry and Bright While Living with Muscular Dystrophy →

Accessible Plays and Stays in Cedar City, Utah

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 →

Accessibility at Hoodoo Moab, Curio Collection by Hilton

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 →

The Making of Red Scooter Diaries: An Interview with The FSHD Advocate

Read the full 2023, Issue 2 of The FSHD Advocate. Article appears on page 15. Watch Documentary Donate

Get Thee to a Dispensary: Managing Muscular Dystrophy with Medical Marijuana

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 →

Let’s Talk About Caregiving (and Muscular Dystrophy)

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) →

Our Favorite Spin of 2021

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 →

Confessions of a Caregiver, Vol. 3, When Opportunity Knocks

Support Claire When service is selfless, it brings joy and peace. When it is rendered with attachment, it brings pain and suffering. If we experience suffering in service, we can examine the way we offered it. An exquisite path of awakening!—Ellen Grace O'Brian There was a knock on the door, the entry from the open … Continue reading Confessions of a Caregiver, Vol. 3, When Opportunity Knocks →

Confessions of a Caregiver, Vol. 2, The One Constant

Support Claire Hard goodbyes Claire and I returned to New Zealand at the beginning of 2014 to wrap things up. During our two-month stay, we finished selling our holdings, a process that entailed donating bag after bag of accumulated stuff, gifting books and equipment, all the necessary steps in letting go of living a decade … Continue reading Confessions of a Caregiver, Vol. 2, The One Constant →

Almost Dying for a Cure

Support Claire They ferried us away in an unmarked van to avoid controversy, the driver reassuring us that crossing over the Mexican border was easiest at this 6 AM hour. One couple, a stylish woman and her equally stylish husband, had done this journey before. The older woman in the backseat, obviously a first timer … Continue reading Almost Dying for a Cure →

Confessions of a Caregiver, Vol. 1, First Comes Love

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 →