Texas born and raised, I call Dallas my home. My parents, David and Mary Ann Marshall, however, are northern transplants from Ohio. After nine years of marriage, they ecstatically welcomed a perfectly healthy, baby girl on November 1, 1966. My sister, Karin, soon followed in 1968. As a baby, my development was ahead of schedule, and I thrived!
At the age of 2, I started slapping my feet when walking. My parents were concerned so they took me to several different doctors. Although they knew something was wrong, even the best doctors were perplexed. No one doctor could pinpoint the problem, and the overall consensus was a grim diagnosis. “Take her home and enjoy her . . . she will not see the age of 3.”
This shattering announcement was the only offering the doctors presented to my devastated parents. As horrific as this news was, my parents never let on. They took one day at a time. Even though they were crushed, they never showed it. They held high expectations for me and treated me like everyone else.
Luckily, the doctors were wrong! I attended Mary Immaculate Catholic school from kindergarten through 8th grade. In grade school, I was diagnosed with Spinal Muscular Atrophy, a type of Muscular Dystrophy, at Scottish Rite Children’s Hospital which was weakening my muscles, making it difficult to walk. In 7th grade, leg braces assisted me when walking. In 8th grade, I fell and broke my left hip. The fact that the doctors prescribed NO physical therapy, put me in a wheelchair for good. A decision which would affect my future more than I could ever imagine. No matter, I went on to graduate from Ursuline Academy in 1985, an all-girls Catholic high school.
As an “adult”, turning 18 meant new doctors, a new hospital, and a new diagnosis. UT Southwestern Medical Center presented a new, yet still unconfirmed, diagnosis of Charcot Marie Tooth (CMT2). As in the past, every visit ended with shrugged shoulders from the doctor. This ritual became almost comical to me. I played along because it was the only way I could obtain prescribed medical equipment (wheelchair) needed in order to maintain my independence.
A driving force throughout my life has been striving for independence. Driving a car, attending college, having a career, and living on my own have allowed me freedoms all young people desire. Yet, independent has not meant alone. I could never get by without friends and family who have always been willing to lend a hand. For this, I am so blessed!
Some of the best years of my life were spent at Texas A&M University where I received a degree in elementary education. It’s also where I met my best friend, Liz, who is the Lucy to my Ethel. She is still near and dear to my heart for over 30 years!
After leaving Aggieland, Richardson ISD hired me as a 4th grade teacher at Dartmouth Elementary in Richardson, Texas. I went into teaching to become rich – rich with knowledge, rich with smiles and hugs, rich with the ability to inspire others, and rich with the hope of making a small difference in the world. I taught 4th grade for 17 years and 3rd grade for three years.
In 1997, assistance with independence came in the form of four furry paws. Temecula, a gorgeous, brilliant yellow lab was my first service dog. After Temec’s retirement, Jill, a sweet, yellow lab/golden retriever mix took the helm. Both dogs helped me with tasks, at school and around the house, such as picking up dropped items, getting the mail, or pulling clothes out of the dryer. Their love and loyalty deeply enriched my life!
After 20 years, a pinched nerve caused by an injured SI joint in my lower back left me no choice but to retire from teaching. My life was altered as well as my independence. As much as I fought it, I had to accept the gradual domino effect of retirement. Relinquishing my career, selling my accessible van, and much loved condo was challenging , yet I felt so blessed that my always supportive and loving parents welcomed me back to the house I grew up in. It was time to focus on my health.
Incredible pain led to two neurologists who could find nothing wrong. I left their offices more discouraged than before I entered. My nerves were rattled. MD had always played a role in my life, but never took center stage. Was it trying to grab the spotlight? I knew if doctors couldn’t help my plight, I would have to take charge.
Taking control of my pain meant being open to different forms of treatment. Traditional pain medicine and acupuncture briefly worked, but only masked the problem. Briefly working in a warm water pool definitely made a difference, yet abruptly ended after insurance dictated my miraculous recovery. I needed a trainer to help continue my physical progress. Luckily, Tom Jensen, owner/president of Elect Wellness, a home fitness company, popped up on my radar.
I joined Elect Wellness, a home fitness company, from 2011–2021. Elect Wellness owner, Tom, and my trainer, Bob, helped me gain muscle mass while losing fat. The immobility due to my S/I injury plummeted my weight to 95 pounds. The immediate goal of Elect Wellness was to increase my BMI (body/mass index) through a balanced, high protein diet and 1550 calories per day of healthy nutrients, gradually increasing my weight to an uncomfortable 120 pounds. Over 20 inches of healthy size was gained throughout my shoulders and limbs, while reducing my diastolic blood pressure by 17 mm Hg, ensuring heart health.
In 2012, Tom introduced me to chiropractor, Dr. Cristina Robinson. Dr. Cris immediately diagnosed and temporarily relieved my back pain. The SI joint, where the pelvis and tailbone meet, had rotated out of place, pinching my nerve. Unfortunately, my muscles were not strong enough to hold my adjustment in place. She informed me that it’s one of the worst injuries to have if you’re sitting down. After the first adjustment, the pain was gone! Sweet relief after enduring a full year of pain. Pain only comforted by lying on the floor during that time. This unfortunate position contorted other weak bones and joints way out of place. Dr. Cris and I were both facing the daunting task of putting Humpty Dumpty back together.
After 6 years of adjustments and exercise, my SI joint remained precarious and unreliable. I intuitively felt my body needed more movement, and that something else needed to be addedk to my regiment. I googled holistic physical therapy, not even knowing if it existed. Up popped Holistic Health Works owned by Yvonne Brannigan, a physical therapist and massage therapist who specialized in myofascial release. Her simple, yet remarkable technique was the key to loosening my fascia and psoas muscle, allowing my SI to become more relaxed yet stable. Sadly, she moved to Scotland after a few months. Not until 2022 did I find Laurie Griffin, a similar massage therapist who was also trained in myofascial release, lymphatic drainage, and stretching.
As hard as I tried, effort always trumped progress. It was time for a definitive answer to my lifetime interruption. In spring 2019, genetic testing confirmed Charcot Marie Tooth 2A caused by a mutation of the MFN2 gene. My parents were tested as non-variant carriers that same summer – CMT2A was not genetically detected. What a relief!
After 10 years of adjustments, Dr. Cris and I had started to see a decline in my physical well-being towards the end of 2021. She thought that my brain – body connection was off and referred me to Synapse, since renamed Parker Performance Institute in Frisco, Texas. It didn’t take long for young Dr. Leonard to recognize that I needed more than what they could provide.
Dr. Leonard referred me to Neurokinetix: A Neurological Recovery Center, in Fort Worth, TX. Getting there wasn’t easy. But, with the help of 29 friends over nine months, I did! Here, on June 20, 2022, I experienced true physical therapy for the first time in my life But, this wasn’t your typical physical therapy program. It was highly sophisticated, incorporating the latest technology, such as the hyperbaric chamber, standing frame, and zero gravity machine. Neurokinetix brought me more strength and healing in nine months, than in the past 10 years. I’m positive that this is not only due to the exercise, but to the healing power of love and socialization with the friends who drove me. Sadly, at the end of March 2022, the medical Director, Dr. Brian Wood suddenly passed away, causing Neurokinetix to temporarily close.
While waiting for Neurokinetix to reopen, strengthening continued for three months (April – June 2023) with Collage; a home and community based physical therapy program. They were unique. Not only did they offer OT and PT, they also offered recreational therapy, yoga therapy, counseling, social workers, and services for a new wheelchair. Although my overall experience was beneficial, often our philosophies were not aligned.
The one thing Neurokinetix, Collage, and I did agree on was the fact that I needed to focus on strengthening my pelvis, by attending the Rosipal Institute for pelvic floor therapy. This therapy will begin July 25, 2023.
CMT denial was no longer an option. I had to start being proactive. Research led me to Dr. Robert Baloh and the amazing work his lab is doing for CMT patients. It, also, guided me to a medical journal which stated that by increasing the MFN1 protein to balance the MFN2 protein (in mice), in the MFN2 gene, health and function was fully restored! Finally, tangible hope more research led me to a plant-based diet since my cells have difficulty converting food to energy. Also, I am so grateful for discovering the CMT Research Foundation and the Hereditary Neuropathy Foundation, which provides a wealth of current information and research, making me realize that I am not alone!Uniting the best of my pre-diagnosed CMT efforts, like diet and exercise, with new CMT research and discoveries will, hopefully, create the healthiest and strongest version of myself. Please, join me on this exhilarating, unpredictable journey. I have no idea what it holds for me, but I ask that God’s grace guide me in continued Strides of Faith.
Uniting the best of my pre-diagnosed CMT efforts, like diet and exercise, with new CMT research and discoveries will, hopefully, create the healthiest and strongest version of myself. Please, join me on this exhilarating, unpredictable journey. I have no idea what it holds for me, but I ask that God’s grace guide me in continued Strides of Faith.Uniting the best of my pre-diagnosed CMT efforts, like diet and exercise, with new CMT research and discoveries will, hopefully, create the healthiest and strongest version of myself. Please, join me on this exhilarating, unpredictable journey. I have no idea what it holds for me, but I ask that God’s grace guide me in continued Strides of Faith.
