By Daryl T. Stuart
I had always been a stay- at- home mom. With three children – two boys and a girl – I would often volunteer at school and for scouting events. As the children grew older, I added the Smithsonian Institution to my activities.
I loved it so much I decided, at the age of 40, to pursue a master’s degree in museum studies. After completing the program in 1992, I began managing the object loan program at the National Museum of American History. I figured I had 25 good work years ahead of me.
Everything was going well until I began noticing some physical changes. In crowds, I walked more slowly. After walking for short periods, my right leg would begin to drag. I’d often lose my balance. My memory, an essential part of my job, began to fail.
I sought medical guidance and was given several different diagnoses, none of which were accurate. Finally, in 1998, I was diagnosed with Multiple Sclerosis, a disorder that attacks the central nervous system. Stunned, I immediately thought of my cousin Brenda, who was just a few years older than me and had MS. She lived in a nursing facility because she could no longer care for herself.
My husband of 28 years and I were devastated by the diagnosis. After telling our children and shedding many tears, I called my mother. I knew this call would be difficult. Mom had suffered unthinkable losses just eight years before, when my dad and my older and only sister had died within seven months of each other.
There was silence on the telephone as I told her of my MS diagnosis. Mom, I said, MS is not a death sentence and there are several drug treatments available.”
Multiple sclerosis is a disorder in which the immune system attacks the central nervous system, causing scarring. The scarred tissue makes it difficult, sometimes impossible, for signals from the brain – such as those that control walking, seeing and remembering – to get to other parts of the body.
The drug Baclofen, a muscle relaxer, eased the stiffness in my legs that made waling difficult. I also began a program of daily injections of Copaxone, a drug that replaces parts of my own damaged nervous system.
Because there is no cure for MS, my central nervous system remains under attack.
I didn’t like the idea of using a cane to help me keep my balance. Too young, too cute, too vain. But, as an independent person, I realized that by using a cane I could safely navigate almost whenever and wherever I wanted. I found a jazzy clear acrylic cane that has become a perfect walking companion.
After 14 years of living with MS, I have learned I can not only survive, I can thrive. This is how I make it work for me:
*Exercise – It is important to keep moving and keep the muscles stretched and flexible.
*Energy management – I have a finite amount of energy each day, so I needed to think ahead about how I want to use it. Rest time is essential.
*Time management – Tasks seem to take more time than they used to, so I am more generous when I budget my time for a task.
*Heat management – Heat slows down the transmission of nerve signals, making it difficult to do anything. High temperatures overwhelm my body. I spend hot summer days in air-conditioned spaces such a movie theaters; travel to cooler climates and hope for an early fall with its more moderate temperatures.
*Embrace friends and family – Loved ones want to help. Let them.
Rather than focusing on what I can’t do or what may be harder for me to do because of MS, I decide what I want to and can do. Then I devise a plan to accomplish my goal. It has evolved, as leaning of a cane for balance has increasingly faded to the rear-view mirror.
Fast forward for an update. It has been ten years since I first wrote my MS story for Heart and Soul Magazine in 2012. I continue to follow through on my same six basic points.
*In 2017, a routine MRI scan showed no MS activity. Then, again in 2018, another routine MRI scan showed no MS activity. At that point I decided to discontinue the use of Copaxone, the drug I had injected daily for the last twenty years and cost much more than any insurance plan was willing to pay. The daily injections were a synthetic myelin made to replace my missing myelin. The myelin my immune system had attacked and destroyed.
Medical science and my doctors have no explanation for this turn around. How or why my MS activity ceased is a mystery. My current neurologist and I celebrated my good fortune as I promised to return to her office if needed.
Meanwhile, I keep moving and take every opportunity to pass on encouraging words to anyone who tells me “I have MS.” I say to them, “Living with MS is not the end of the world.” It is, however, a challenge that must be met every single day.
There are a variety of treatments today that did not exist when my cousin Brenda and I were first diagnosed. Unfortunately, with no treatments, her health continued to decline until her death in her late 50’s. I’m 72 and still pushing the throttle.
