For many people living with FSHD, the anxiety and stress of coping with disability, pain, fatigue, and interactions with others can be just as debilitating as the loss of muscle strength and function. People must deal with feelings of grief, anger, frustration, and hopelessness. FSHD takes a toll on mental health, but therapy, coaching, mindfulness, and other techniques can make a difference. Circumstances can't always be changed, but we can transform how we cope with them through knowledge, practice, and a community of support. Our "department of mental health" will offer webinars, virtual and in-person support groups, articles, and resources to help you move toward greater well-being and happiness.
Scroll down to view videos and blog posts relating to mental health and well-being.
Mental health and wellness videos
Managing difficult emotions and experiences, with Dr. David YoungerIn this FSHD University webinar, psychologist David Younger will teach you about one of his favorite mindfulness practices. It will help to demystify the concept of mindfulness so you can put it into action in your daily life in a clear step-by-step process. He will provide a handout and guided practice audio to anyone who is interested.
David Younger, PhD, is a clinical psychologist based in Austin, Texas. He was diagnosed with FSHD at age four, the same time as his mother and grandmother were also found to have the condition. In a compelling blog post, he shared his personal journey of learning to accept his life with FSHD and moving beyond it to finding well-being and becoming a clinical psychologist. Today, “I have a 100% online video-based practice with individuals and couples,” he says. “My two main focuses are relationships and people with chronic health conditions. That said, I also see people dealing with depression, anxiety, stress and life-changes.” Visit Dr. Younger’s website for more information. http://www.dbyounger.com/
For more resources about FSH muscular dystrophy, visit fshsociety.org.
FSHD Radio Show with Sue Drescher, Sharegiver HourBay Area Chapter Director and passionate FSHD community advocate, Sue Drescher, joined Tim on the FSHD Radio show in February 2021 to talk about her efforts to bring the community together and support those who live alongside and love those with FSHD.
FSH Society Atlanta Meeting: Mindful YogaRecorded June 30, 2012. Mindful yoga, relaxation and other integrative health practices with Dennis Buttimer, MEd, CEAP, RYT, Buttimer and Associates, Atlanta, Georgia.
Mental health and wellness blog posts
“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 »
by Lori Brant There were two ways to walk with my walker down the hallway to my condo. The first way kind of went like this: “Man, I am tired. It has been such a long day.” I hate having to concentrate on each and every step. I can’t stand making sure I’m taking my… Read More »
A Gift You Give to Yourself! by Leigh Reynolds, FSHD Society Celebrating the holidays can be emotionally draining for many, but for those with a chronic condition like FSH muscular dystrophy it can be even more so. Add in a year like we’ve had – global pandemic, natural disasters, politics – and it is downright… Read More »
by Jennifer Egert, PhD, New York City I had a picture in my head: swimming in a pond at the base of a waterfall. Six months after the arrival of COVID-19, I craved an experience to “feel alive” again and planned a visit to upstate New York to see good friends. The first morning, my… Read More »
Meet Jenny and Tony, our new FSHD University “adjunct professors.” Jenny and Tony are a married couple who share information and offer encouragement on their YouTube channel in the context of their interabled relationship. Tony’s life with FSHD has set them on a journey to discover better ways to problem solve together and live life… Read More »
Join us via Facebook Live on Wednesday, April 24, at 9:00 pm Central / 10:00 pm Eastern time (note change of time) for our conversation with Drs. Ora and Isaac Prilleltensky about sustaining healthy, honest relationships with family and friends while living with a chronic condition. Ora Prilleltensky, PhD, obtained her doctorate in counseling psychology from… Read More »
We have published a new e-brochure, “Not Alone,” by Kelly Mahon Hessler. Based on interviews with a wide range of FSH muscular dystrophy patients, parents, and partners, this e-brochure assures those who have received a diagnosis that whatever they are feeling, others have had the same experience. We also provide resources for people to get… Read More »
When one path ended, a new one opened up by Nelson Dronet, Sulphur, Louisiana I would like to take a moment to share my story in the hope that it reaches at least one person and helps him or her understand that a diagnosis of FSHD or any other neuromuscular disease can be transcended. Growing up,… Read More »
by Dave Lukas, Lake In the Hills, Illinois Three years ago, my life was changed forever. Three years ago, I walked out of a doctor’s office, got in my car and sobbed. Three years ago, my image of what my future looked like was shattered. Today, my life is still changed forever. Today, I leave… Read More »
Muscular dystrophy is a part of me, but it does not have me by DAVID YOUNGER, PhD Austin, Texas I was diagnosed with FSHD when I was about four, at the same time my mother and grandmother were diagnosed. The only symptoms I had at that point were that I slept with my eyes partially closed and a… Read More »