Patient’s Perspective

Patient’s Perspective section is authored by Cathy Chester. Cathy tells her story of MS and the role physical therapy played in her life.

How My Long Journey with MS Started on the Right Foot

By Cathy Chester

In 1981 my life turned on a dime in ways I never imagined. I was twenty-one and a recent college graduate, ready to conquer the world with the naivete of a child. At that age, you believe you’re invincible.

My dream began to unravel one snowy night when a driver forgot the rules of the road and crashed into my car head-on. His mistake sent me to the hospital with a concussion and the need for immediate surgery. I ended up with sixteen stitches in my forehead and numb feet that I did my best to ignore.

My doctor misdiagnosed the numbness as wearing tight shoes. Five years later when the numbness included my legs and hands I finally realized he was wrong. The tipping point happened while walking through Manhattan’s Port Authority and I didn’t feel my right high-heeled shoe slip off my foot.

Something was seriously awry.

A neurologist quickly diagnosed me as having relapsing-remitting multiple sclerosis. I had never heard of MS and in those pre-internet days, there was no way of finding immediate answers to my multitude of questions.

I soon found a medical team that referred me to a highly qualified physical therapist. The therapist would teach me how to walk properly since I could no longer feel my feet. My newly learned gait would help lower the risk of tripping and falling.

Little did I know how much I’d depend on this therapy for the rest of my life.

My mother drove me to my therapy appointments because I realized that, as a driver, I was now a safety hazard.

To say the therapist was a mensch, a man of great integrity and honor, is an understatement. He was warm and caring at a time when I was emotionally raw. He would teach me how to manage a world that often excludes and discriminates against the disabled.

In those days prior to FDA-approved MS medications, many doctors advised patients to do little more than rest to care for their disease. After quitting my job and giving up my apartment I moved back in with my parents. I was being robbed of my independence.

We worked as a team, an experienced teacher alongside a willing student. The goal was to improve abilities that sound simple to most but are difficult for many: walking, managing stairs and curbs, using a cane, and maintaining good balance.

As children, we take our first few steps with parents sighing and feeling relieved. When we lose that ability, we can cascade down a black hole of sadness and loss of self. Imagine finding a physical therapist who would help lift me out of that dark place.

My therapist and I worked hard together until I no longer needed his guidance. Large doses of oral steroids restored some feeling in my feet, and a prescription for car hand controls allowed me to drive again. It was time to rejoin life with a renewed sense of confidence and gratitude.

Since then I’ve had a good life. I got married, had a healthy child, and found work I love and am grateful for. My physical therapist taught me the importance of a good medical team, doctors, and providers who value patients as human beings and listen to their needs. I tell others about the importance of building a trustworthy medical team and I have always followed my own advice.

MS is unpredictable. It has thrown me some curveballs and I have faced them head-on. I’m still considered relapsing-remitting, but the numbness in my right leg and foot is permanent, and I live with other issues: fatigue, spasticity, weakness, cognitive imbalances, bowel and bladder dysfunction, dizziness, and tingling.

I experience walking and balance issues and still rely on the lessons I learned years ago in therapy. Overall my life is rich and full, and despite this invisible illness I know I am blessed.

Recently my mother and I reminisced about my late beloved father. Dad had a catastrophic stroke in 2000 that affected his left side. He received highly specialized therapy at Kessler Institute for Rehabilitation and, along with his dogged determination, it enabled him to walk, dress, and perform everyday living tasks for seventeen additional years. He amazed doctors, family, and friends.

My mom had a front seat watching both me and my father struggle as we worked to regain independence and self-confidence. Dad and I were fortunate recipients of strict, compassionate therapy that I’m thankful and deeply grateful for every day of my life.