An interview with Tim Hollenbeck, FSHD Radio host
On the second Tuesday of every month, at 8 p.m. CT, Tim Hollenbeck fires up a live video stream on the FSHD Society’s YouTube channel to chat with a parade of interview guests, share news, and offer words of encouragement in his calm and cheerful baritone. With a voice made for podcasting and a mind that is endlessly curious about the world and the people he meets, he is a superb ambassador for our community. In this interview, Leigh Reynolds turns the tables and asks Tim the questions.
When were you diagnosed and what was that process like?
It started as a simple trip to the doctor because of shoulder pain when I threw a baseball. The winging was a red flag, so I was sent to an orthopedic doctor. As I stood in front of a mirror, he asked, “When you see yourself, do you see something wrong or yourself?” I said, “Myself.” He responded, “I see something wrong.” It was very eye opening. The third doctor I saw was very matter of fact: “I think we are dealing with a muscular dystrophy issue here.” I was shocked. The entire experience was surreal. I just sat in my car afterward. Not sure how long. I watched the people come in and out of the doctor’s office and thought, “There is no way I am the only person that walked in to the doctor one way and came out completely different.”
How did you find the FSHD Society?
I simply took to Google, like everyone does. I met with doom and gloom, cloaked in the words “no treatment and no cure.” I needed something else to focus on, and I found the FSHD Society.
What gave you the idea to start a podcast?
When I found the FSHD Society, I wanted to learn as much as I could. I learn best by listening, but there was no podcast. I thought there should be one, so I emailed the office and offered to create one. I had no idea if people would listen. I just hoped to produce good content in a way for people to learn more and get some help.
Are there any moments or guests on the show that impacted you more than another?
When I start an episode it’s exciting, because it is live. I never know what a guest will share or what we’ll discuss. I really enjoy it when guests share their own FSHD story. The courage to do so is awesome. I have felt their pain and words pass through me, and I have been moved many times. I particularly remember the interview with Alexandra on the 2019 telethon; it was particularly moving to me. I lost it a bit on the live event. It was real, and I was okay with it, because on these episodes I feel I am among friends. It is a safe place to be vulnerable.
What would you say to someone else who was thinking of leveraging something they like to do for the FSHD community? Or about getting involved in general?
Walk down the path. Send an email, share the idea, and see what happens. We all have value and something to share. Our skills and talents are not meant to keep for ourselves. They are meant to be shared with others. Patrick Gray of I’ll Push You said, “There is too much hope not to share it.”
Reach out. Be connected. Connection bridges gaps and takes away space, whether you are across the street or across the world. Our stories need to be shared. My hope is that more people with FSHD will realize that their stories need to be told. Broader awareness, building a louder voice, will lead to a cure.
Check out Tim’s FSHD Society Radio podcast, available on all major podcasting platforms.
Thank you Tim!
Linda Jones
For years my Dr. said I had FSHD. But tested negative for it. My Dr. retired so I was sent to a new one. He seems to think I have a type of myasthenia Gravis. He did a EMG shock test and they noticed the nerves weren’t telling the muscles what to do. I have spent lots of years thinking I had FSHD. I have all the symptoms for it. Can’t lift my arms above my head. Jetted out scapula.
Have you heard if this has happened to anyone else?
Kim