When the time is right: Birding with FSHD
Paul with his wheelchair-mounted scope.
Photo courtesy of Paul Miller.
FSHD muscular dystrophy is a slowing progressive muscle weakening disease that primary affects the upper body and stomach muscles, but progresses to affect the entire body. (“FSHD” stands for facioscapulohumeral muscular dystrophy — referring to the face, shoulder and upper arm.) Up until age 40 FSHD only kept me from intense physical activities like running or weight training. However I never was fully able to raise my hands above my head without significant effort. In the last 10 years it has several impacted my physical abilities. Currently I use a walker or walking cane to move around. Even daily chores are laborious. If I over do it, I will need a full day to recover.
My journey of getting involved with other birders while having FSHD muscular dystrophy is long and circuitous. It started out innocently enough when a dear friend invited me to participate in an eight week birding course entitled “Birds of Winter”. The course included lectures and field trips. It was while trying to participate in the field trips that really opened my eyes to the obstacles I would need to overcome to truly enjoy birding, and birding with a group.
The difficulties I had keeping up with birding groups while trying to raise binoculars to see birds was disheartening. My discomfort was truly my own doing and not related to the group. I felt different and had different needs, and did not want to hold others back. In retrospect, most members probably had no idea I was struggling, both physically and emotionally. But I was. As a result, I spent many years birding on my own, or with my friends, and building adaptive birding equipment and mobility devices.
Paul with his binocular set up, which allows him to see through his binoculars without having to hold them to his eyes.
Photo courtesy of Paul Miller.
Becoming active with Audubon and Birdability began for me by reading the article about Virginia Rose in the Audubon Magazine. I approached my local Audubon chapter to see if they had any adaptive birding activities. They had conducted monthly field activities designed for all birders for years, and were open to my involvement. Now the Sacramento Audubon Society has a brand new Accessibility Committee, and me as a new board member. I owe it all to Virginia and her vision!
The wheel located on the top of my binoculars (see photo to the left) is connected to an electric focus motor. I control the motor with the remote that is located on the monopod at arm rest height. I’m currently working on a more refined design that eliminates the big wheel and will be more robust for transporting around.
Currently I am using a wheelchair to bird. As this requires a special birding location, I have not participated in any group outings to date. My goal is to develop monthly accessible birding field trips through my involvement with Sacramento Audubon. The trips would be identified as specifically designed for birders with mobility issues, but open to all who want to attend. I’m hoping these outing materialize, and I can fully enjoy birding with a group.
I have also set up the fshdbirder.org website to share my story and equipment ideas with others, especially the FSHD community. Please feel free to email me at paul@fshdbirder.org. I would love to read your story, ideas or inventions, and lend support if needed.
