Why I exercise

To keep myself fit, ready, and aware of changes in my body

by Frank Hanley, Bolivia, North Carolina

This is an exciting time for us. The research, clinical trials, and recent announcements by pharma companies bring increasingly optimistic news that treatment for FSHD is getting closer by the day. As research and development move forward utilizing innovative ways to provide treatment, what can we, the patients, do to prepare for the day a treatment arrives?

My neurologist told me, “Whatever you are doing, don’t stop; it’s working.” That was decades ago, when I saw the doctor at Johns Hopkins University. So what was I doing? I was exercising – qigong practice each morning and kung fu class three times a week. Qigong (pronounced chee gong) is a system of exercise rooted in Chinese medicine. Qigong promotes wellness by strengthening the flow of qi (life energy) through breathing, posture, and gentle movement. I continue to exercise. Qigong every morning. I cut back kung fu to twice a week. I added weight training at the gym three days a week.

Here is why I exercise

• To be ready. With all the recent developments around clinical trials, treatments, and a potential cure, I want to be ready. I want to be in the best shape that I can be, both physically and mentally.
• For prevention. I’m afraid. I’m afraid that tomorrow I will wake up to find out that FSHD took an arm, or my other leg, or my diaphragm, or my smile. I exercise to keep myself as strong as possible and optimistic that what I am doing is working.
• Self-awareness. My exercise routine keeps me in constant contact with my physical condition. I continually monitor myself for changes, looking for weakness as an indicator of a possible problem.
• I really enjoy it.

I started practicing kung fu when I was in my 20s, long before I knew anything about FSHD. Even then, I was struggling with weakness in my left shoulder, but I did not know it was FSHD. I started a family, so I stopped training for a while. In my early 30s, I developed foot drop and was diagnosed with FSHD. The doctor told me, “It won’t kill you, and there’s no cure.” I have what I consider a mild case, so I got on with my life and learned to live with it.

In 2009 I joined a new kung fu school, where I was introduced to qigong. The new workouts really helped me. In weeks, I noticed improvements in my strength, coordination, and balance. I felt the training was helping me fight back against muscular dystrophy, both physically and mentally.

Feeling Fit with FSHD

I got excited when I was asked to help develop the Feeling Fit with FSHD program with the FSHD Society. Here is a chance for me to share the exercises that I find work for me. It is an opportunity to reach out to others and share my workouts. The Feeling Fit with FSHD program is offered through the Society’s Gathering Place online community. Join us and find some exercises that you like and that work for you. Feeling Fit with FSHD streams live on the second and fourth Thursday of each month at 12 p.m. Eastern time. Register on the Society’s website to get the Zoom link, and check out the recordings on the Society’s YouTube channel.

Note: Frank Hanley is a martial artist, author, and teacher of kung fu, taijiquan, and multiple qigong styles and practices. Frank has been practicing martial and energy arts for more than 30 years and presents workshops at local, national, and global wellness events and conferences. He created and hosts the FSHD Wellness Channel Facebook group, and is a frequent host and presenter on the FSHD Society’s Feeling Fit with FSHD Zoom group. Frank can be contacted at qigongforfshd @ gmail.com.