“I no longer live at the mercy of my mind,” says David Younger, PhD, a psychologist who has lived with the physical decline that comes with his diagnosis of facioscapulohumeral muscular dystrophy. The benefits he has gained from meditation and mindfulness training are not just theoretical, but part of his lived experience. In this FSHD… Read More »
David Younger on managing difficult emotions
Pivot
by Larry Chase Those of us who live with FSHD must “pivot” our world constantly. Pivot—the buzz word for what we all are going through and continue to experience, just like when you have “FSHD days” when it seems like there is no relief. My wife, our dog Zip, and I frequent a popular dog… Read More »
Partners in Pain, Harbingers of Hope
by Haviva Ner-David, Kibbutz Hannaton, Israel It was a chance meeting in the valley that divides my Galilean kibbutz Hannaton from the Bedouin village of Bir al Maksur that planted the seed for the storyline of my debut novel, Hope Valley. I was out walking my dog when I saw Hussein, a shepherd who frequents… Read More »
Notes on spinal and scapular surgery
Excessive curvature of the lower spine, a condition called hyperlordosis, can be a particularly painful and troublesome symptom of FSH muscular dystrophy. We are often asked whether abdominal braces or surgery can help. To answer this question, Dr. Ray Huml has kindly given us permission to share an excerpt by Drs. R.K. Lark and E.W…. Read More »
Hot off the press – FSHD Advocate
Our new issue of the FSHD Advocate, the first of 2021, is now available online. For those of you who receive our flagship magazine by the postal service, it will be arriving over coming weeks. As the cover and stories inside emphasize, the FSHD Society’s most important role in working toward a treatment is in… Read More »