by Brian Jude Loiacono
As I reflect back at the year 2021, I’m sure we all can agree that with the pandemic still prevalent in all of its variants, our collective trials have been constant and we have been well tested. As I reflect on this upcoming joyous season, I want to pay homage to my doctor, Simona Treidler. Around February 2019, I met Dr. Treidler at Stony Brook University, Long Island, NY, where she diagnosed me with FSHD. I had already seen many Doctors before our meeting who really didn’t know what was going on with me. She was able to identify my neurological impediment in short order.
I was taken aback by this devastating news, especially not knowing anything about the essential elements of this muscle wasting disease, but her pleasant demeanor and impressive pedigree gave me some level of comfort. As time moved forward, the pieces came together. Her attention to detail is paramount, and she strives to do better each day. She has spent countless hours helping me to improve my symptoms, which she has done. She first prescribed ankle and back braces to help thwart my falls. Most importantly, she is my biggest advocate. As a colleague of Dr. Rabi Tawil, a world-renowned FSHD clinician, Dr. Treidler would interface with Dr. Tawil on my behalf, which speaks volumes about her stellar character.
I am sharing my story to help others who might be in similar positions, worrying about the future, or feeling that the disease is too overwhelming. We are all in this together as we await for FDA-approval of promising drugs like losmapimod. And let’s face it, we need to implement “self help first” by controlling our own destiny, through physical therapy, stretching exercises, eating right, and doing all we can to stay healthy in body and mind.
So, my Christmas wish is for my short story to become an inspiration for others.
Thank you and God Bless You!
I am honored to know Brian for several years now. As is his humble way, he is minimizing the size of the beast he wrestles with daily. He is not the kind of person who will discuss the ferocity of his will, the grace of his character, or enormity of his heart. A man like him walks the walk, and leaves the talk to lesser individuals. Brian is the truest of gentleman, a modern day hero, and a great friend.