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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FSHD Radio Show with Sue Drescher, Sharegiver Hour
Bay 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 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.
Mental health and wellness blog posts
FSHD Connect pre-conference workshop: A Mindful Way through FSHD
Flamingo Las Vegas, Carson City ballrooom Saturday, June 9, 2018 9:30-11:00 AM PST An experiential workshop for patients, family members, and friends for managing stress, illness, and disability. This is being offered as a pre-conference activity of the 2018 FSHD Connect. If you wish to attend, RSVP to Robyn O’Leary at robyn.oleary@fshdsociety.org. Thank you! You… Read More »
Webinar: Psychological interventions to improve well-being in muscle diseases
https://www.youtube.com/watch?v=s67L70Acul4 Note: The video will be posted only until May 31, 2018. Download Chris Graham’s Slide Deck. In this talk, focusing mostly on his group’s work in muscle disorders, Chris Graham, PhD, DPsychol, describes some of the findings from studies looking at what coping methods seem to be beneficial for well-being. He then describes some… Read More »
FSH Society Talk Radio Live Support Group!
Join us on March 28th, 9:00 PM EST / 8:00 PM CST for a live, on-air support group session with the regulars at Connecticut Connections, the FSH Society’s member group based out of Connecticut. You can stream the show on BlogTalkRadio or listen and ask questions on the air by calling (949) 270-5953. For the past few… 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 to interview authors of “I’ll Push You”
Listen live on BlogTalkRadio on Wednesday, January 31, at 9:00 pm EST, or listen and ask questions on the air by calling (949) 270-5953. On our next episode of the FSH Society Talk Radio show, we welcome Justin Skeecuck and Patrick Gray from the book and film “I’ll Push You.” Over the past 20-plus years, a… 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 »
How my progressive disease taught me that it’s okay to be human
By Kristin Duquette My body constantly changes and at times, I feel like there’s nothing I can do about it. Every time I lose another piece of mobility, my mind flashes back to memories and experiences of loss contributed to my body and this condition. I break down because sometimes it’s just too much to… Read More »
Reflecting on FSHDselfies
By Mia Archuleta, Granbury, Texas I have been thinking about people wondering exactly how the FSHDselfies have brought awareness to FSH dystrophy. Here are just a few examples of my journey since posting them. I attend a Bible study group that I absolutely love. In the year that I have been there, everyone has welcomed… Read More »
The Truth Hurts, but I Can Bear It
The following essay was written by Zabrisa, a 16 year old with FSHD who lives in Arizona. “Are you strong enough? Are you really sure you can do this, you’re not too weak?” “You’re such an inspiration for chasing your dreams.” “Smile, Zabrisa!” “You look so weird.” “Your ears–what are those things in your ears?”… Read More »
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