The Ballad of ‘Myositis Joe’

Joe Sanchez is well known to the myositis community with his gentle inspiration helping others to stay engaged.

He is an advocate for early exercise when living with IBM and is the model in Ashley Dalby’s exercise demo videos.

Mr. Sanchez has a warm nature that easily connects with others’ concerns. His tender-heartedness recognizes the emotional plight of living with IBM. He does not shy away from sharing tough issues of fear or depression while still befriending his life’s path and the joy .

He is a MIHRA Patient Advisory Board member!

My name is Joe Sanchez and I was diagnosed with Inclusion Body Myositis (IBM) Oct. 2013. Many know me as “Myositis Joe” on several Myositis Facebook Support Group sites. Today, I’m more mobile and functional than that awful day when I was diagnosed with IBM

I, like many were told in 2016, there wasn’t any cure or treatment for my very rare debilitating muscle wasting disease. I was told back then to limit doing any type of physical activity because exercise/physical activity could speed up my myositis progression.

During my first 9 months dealing with IBM, I stayed home and got very depressed. I felt I was getting weaker and weaker until I woke up one morning and said I can’t do this anymore. I told myself I was going to go down fighting, I was going to WALK myself back to mobility. I contacted my neurologist and got Ankle Foot Orthotics (AFO leg braces) and physical therapy prescribed. I hired my first of many personal trainers and started to walk on an indoor track.

On June 2019, I asked a cancer non-profit in East Texas that offered a clinical exercise program to those dealing with cancer, called “FitSteps for Life” (now called KOURAGE HEALTH), if I could join them even though I wasn’t dealing with cancer, they said yes.

On July 2019, The University of Texas at Tyler opened their Kourage Health exercise center. That’s where I met the one person I give the most credit for helping me stay mobile and functional much longer than anyone first thought possible, her name is Ashley Dalby. Ashley has overseen my UT-TYLER University KOURAGE HEALTH program over the last 5 years.

Ashley is an ACSM certified exercise physiologist and a Lecturer for the Department of Kinesiology at UT Tyler. She’s also is the supervisor for their Kourage Health center, and is responsible for training every intern and graduate student that works at that center each semester.

Over the 5 plus years I’ve participated there, I’ve been instructed by several of the most extraordinary student “Clinical Exercise Specialists” at this location. Two of them ended up going to Med School, another four to PT/OT school, one went into the medical research field, while another one became a nursing-tech. One even became an assistant coach of a highly recognized private school and another opened up her own Orthotic practice.

My first exercise specialist at the UT Tyler Kourage Health location was a graduate student named Nara Asgari. Nara was an international student from Iran who already had a graduate degree in orthotics and prosthetics, and she turned out to be the perfect fit for me because at that time, I wore AFO braces on both legs and I was using a cane on my walks.

During my initial physical and functional assessment, Nara asked me if I wore my AFO leg braces all the time, and I told her only when I’m out of the house. So she asked me to take them off and walk for her, which I did.

Nara noticed I was walking like I was ice-skating on a perfectly flat/dry surface, and I was drifting to one side. The next thing Nara asked me to do was try and walk on my heels, then on my toes, which I did. Then she smiled back at me and said she believed she could help me improve my ability to walk without using my leg braces.

Nara didn’t think I had the medical condition known as Footdrop, although I had the symptoms of Footdrop, which was causing my tripping issues. She told me patients dealing with the medical term of Footdrop aren’t able to walk on their toes or heels. Nara believed I wasn’t lifting my quads/knee/legs high enough to safely complete my stepping motion.

Over the next two years, Nara taught me how to walk safely again. We had to work on improving my balance and my ankle strength. We also had to focus on walking with intent, and raising my knees/quads high enough to complete my stepping motion.

Treadmill Overhead
Medicine Ball Throw
Up the Stairs
Floor to Stand
Hand Power Ball

Currently, when well rested and focused, I no longer need to wear my AFO leg braces anymore or use a cane. Over the next four years, with the help of my KOURAGE HEALTH, UT-TYLER University team, and Ashley D., my ability to walk with focus/intent, my ability to step over obstacles safely, my balance, and my ability to become functional again improved far beyond my expectations.

Currently there are 9 IBM patients participating in the in-person KOURAGE HEALTH sessions and another 30 plus active Myositis KOURAGE HEALTH members taking advantage of KOURAGE HEALTH’s Daily Exercise Zoom sessions.

In 2023, “FitSteps for Life” changed their name to KOURAGE HEALTH, and now offers their FREE Clinical Exercise Program to anyone dealing with Cancer, MS, Parkinson’s, Myositis, or other debilitating disease that requires “The Power of Movement” for medicine.

I would also like to recognize The University of Texas at Tyler for their efforts to learn as much as they can about our Myositis disease and for committing the necessary resources to help create Hope that someday we can improve the quality of life of a Myositis patient.

Please check out my “KOURAGE HEALTH” exercise videos showcasing what I was doing in 2021 thru 2023.

“Myositis Joe’ Exercise Demo May 2023
‘Myositis Joe’ Exercise Demo – Fall 2022

“Myositis Joe” Exercise Demo – Fall 2021