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

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 improve my … Continue reading Get Thee to a Dispensary: Managing Muscular Dystrophy with Medical Marijuana

Bending Focus: Lessons from a Rare Disease

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, and speak, … Continue reading Bending Focus: Lessons from a Rare Disease

How to Successfully Engage with People with Disabilities

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 woman on … Continue reading How to Successfully Engage with People with Disabilities

Let’s Talk About Caregiving (and Muscular Dystrophy)

The quality of mercy is not strain'd.It droppeth as the gentle rain from heavenUpon 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 offers insights and information to make … Continue reading Let’s Talk About Caregiving (and Muscular Dystrophy)

Scootering Sedona’s Red Rock Scenic Byway (Arizona SR 179)

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! Scootering Red Rock Scenic Byway Getting There From Phoenix, take the I-17 north, exit … Continue reading Scootering Sedona’s Red Rock Scenic Byway (Arizona SR 179)

Our Favorite Spin of 2021

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 landscapes teeming … Continue reading Our Favorite Spin of 2021

Managing Muscular Dystrophy with Technology

…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 functionality, meaning … Continue reading Managing Muscular Dystrophy with Technology

Spinning Scenic Needle Rock Rd – Rio Verde, AZ

  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 distance Lightly … Continue reading Spinning Scenic Needle Rock Rd – Rio Verde, AZ

Top Tips When Booking Accessible Travel

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 accessible adventures. … Continue reading Top Tips When Booking Accessible Travel

Scootering New River Trail, Peoria, AZ

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 thereHandicap parking and ADA restrooms are readily available at Rio Vista Community Park (8866 W. Thunderbird Road, Peoria). This park is the … Continue reading Scootering New River Trail, Peoria, AZ

How a Musical is Changing Perceptions About Disabilities, Including Mine

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 our feet, … Continue reading How a Musical is Changing Perceptions About Disabilities, Including Mine

10 Top Tips for Buying a Mobility Scooter

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 PursuitTo that end, my candy apple red Pride Pursuit mobility scooter is one … Continue reading 10 Top Tips for Buying a Mobility Scooter

The 10 Best Ways I Keep Anxiety at Bay

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 anxiety is … Continue reading The 10 Best Ways I Keep Anxiety at Bay

Confessions of a Caregiver, Vol. 4, Adventures in Healing

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 and a … Continue reading Confessions of a Caregiver, Vol. 4, Adventures in Healing

Queen for a Day (with Muscular Dystrophy)

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 was easy. … Continue reading Queen for a Day (with Muscular Dystrophy)

Rehabbing at Sante of North Scottsdale

Accidents happen, even red scooter accidents. In mid January, I fell off my zippy mobility scooter after taking a curbed curve too quickly and fractured my pelvis in three places. Ouch! After a brief hospital stay, I was transferred to Sante of North Scottsdale where I convalesed for over a month. What follows is a … Continue reading Rehabbing at Sante of North Scottsdale

Scootering the Row River Trail, Oregon

The unassuming city of Cottage Grove is the home of one of Oregon’s most gorgeous recreational multi-use trails, the Row River Trail. The paved, mostly flat path offers the perfect adventure: spectacular scenery, interesting history and great accessibility for mobility devices of all kinds. It’s a perennial day trip from Portland for my husband and … Continue reading Scootering the Row River Trail, Oregon

“Scooter Person” Jane Fonda

Karma? Serendipity? Call it what you will… I’ve only written to one celebrity in my life, Jane Fonda, and that was just a few months ago (read below). Then, last night at dinner in Ashland, Oregon I shook hands with her. Lovely lady. My post to Jane Fonda's website on embracing one’s inner “scooter person”: … Continue reading “Scooter Person” Jane Fonda

Where do we go from here?

 "To die will be an awfully big adventure." —Peter Pan She wouldn’t tell me why she was scared. She didn’t need to; I knew why: Nudgemamma ("Nudgie" for short), Hungarian for "grandma," was there to die, transition, pass on, kick the bucket, go off the grid, whatever you want to call not living in a … Continue reading Where do we go from here?

Accessible Bridges and Boardwalks, Portland, OR

After wintering in the desert, it was great to reacclimate to the luscious Pacific Northwest with one of our favorite ADA accessible outings, one we’ve done over a dozen times: rolling a section of the Springwater Corridor into and around downtown Portland’s riverfront. Scenic cityscapes peek through punctuated clearings of natural wetlands, making the journey … Continue reading Accessible Bridges and Boardwalks, Portland, OR