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
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FSH Society Atlanta Meeting: Mindful Yoga
Recorded June 30, 2012. Mindful yoga, relaxation and other integrative health practices with Dennis Buttimer, MEd, CEAP, RYT, Buttimer and Associates, Atlanta, Georgia. -
FSH Society Atlanta Meeting: Psychological, spiritual and social dimensions of FSHD
Recorded July 1, 2012. Panel moderated by psychiatrist Carol Birnbaum, MD. -
FSHD Society Sequester Camp. How to connect. How to help.
During this extraordinary time of social distanced imposed by the covid--19 pandemic, how are you coping with the challenges? Our panelists Amy Bekier and Cyndi Lemere offer some great ideas and answer your questions. Join us weekly on Thursdays at 1:00 pm Eastern Time for our Sequester Camp webinars! For more information, visit www.fshdsociety.org.
Mental health and wellness blog posts
Embrace your experience
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 »
Making the Most of the Holidays
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 »
Walking in water – mindful movement through difficult times
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 »
YouTube series on interabled relationships
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 »
FSH Society Radio on Living, Loving, Caring, Sharing
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 »
Moving toward well-being
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 »
Talk Radio: Mindfulness with Dr. Jennifer Egert
Join us on April 25th, 9:00 PM EST / 8:00 PM CST for a live, on-air interview with Jennifer Egert, Ph.D., a clinical psychologist with FSHD who offers mindfulness based psychotherapy and workshops in Mindfulness Based Cognitive Therapy (MBCT) and mindful approaches to cope with stress and anxiety. You can stream the show on BlogTalkRadio or listen and… Read More »
Knowing others who share your diagnosis makes you happier
Findings from major study of long-term disability We at the FSH Society have long believed that helping individuals and families with FSHD meet one another is one of the most important services that we provide. It’s why we invest energy in our peer support network, local gatherings, social media groups, and the biannual FSHD Connect… Read More »
FSH Society Talk Radio, On-air Support Group
Join us on Wednesday, December 27, at 9:00 pm EST / 8:00 pm CST for our live radio show. Tune in HERE. On this episode, the featured guest is you, the listener! Call our host Tim Hollenback at 949-270-5953 to ask questions and tell us about you. We’ll be joined by FSHD ambassadors Carden Wyckoff and… Read More »
FSH Society Talk Radio on mindfulness in coping with FSHD
LISTEN LIVE HERE Wednesday, June 28, 2017, 9:00 pm EST / 8:00 pm CST Our guest is Carol S. Birnbaum, MD, a psychiatrist in private practice in Cambridge, Massachusetts. She is a tireless advocate for the Society as an advisor and liaison with patients and families. In 2011, Dr. Birnbaum lost her mother to complications related to FSHD. She is… Read More »