Recommendations. Reflections. Advocacy.
Support Claire 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 … 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 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)