Category: Reflections

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 →

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

Video Shorts: Aqua Therapy for Muscular Dystrophy

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 →

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 →

Bending Focus: Lessons from a Rare Disease

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 →

How to Successfully Engage with People with Disabilities

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 →

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) →

Managing Muscular Dystrophy with Technology

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 →

The 10 Best Ways I Keep Anxiety at Bay

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 →

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

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 →

Queen for a Day (with Muscular Dystrophy)

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) →

“Scooter Person” Jane Fonda

Support Claire 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 … Continue reading “Scooter Person” Jane Fonda →

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 →

Where do we go from here?

Support Claire  "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 … Continue reading Where do we go from here? →

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 →

And then the unimaginable happened

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 →

The Backstory: Growing Up with Muscular Dystrophy

Published in Australian Yoga Life magazine, the following article tells my story about growing up with muscular dystrophy and how yoga helped. I wrote this piece in 2014 when the condition was really just starting to rock my world. Much more was about to change, but more on that later. First, the backstory: Read Connect … Continue reading The Backstory: Growing Up with Muscular Dystrophy →

Going Places

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 →