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
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 »