The Patient’s Perspective section is authored by Rosemarie Collopy. In her posts she documents her journey through the years, how the research field changed and gave new hope and perspective.
This December 2020 I will have been diagnosed with multiple sclerosis for more than half of my life.
My life looked so different before I was diagnosed. In 1990, I worked two jobs in the dentistry field. During the day, I worked in a dental office. At night, I taught adjunct courses in Dental Assisting and Dental Hygiene. My husband and I worked in the same dental office and we would commute back and forth to work by bicycle, cycling 15 miles each way. Our vacation that year was cycling 550 miles across Iowa!
By the spring of 1991, our family started to grow with the birth of our beautiful baby girl. We had plans of bringing our daughter into our active lifestyles.
Our first Christmas as a small family of three was magical. Walking around the mall the next day, I noticed my left hand became numb and then my left leg felt numb. My initial instinct was a migraine was brewing. The next morning, I woke up to the entire left side of my body being numb. This led me to seek out a neurologist who immediately diagnosed me with MS. As he was explaining MS to me, all I could envision was being in a wheelchair. I was devastated. All of my hopes and dreams for my family came crashing at my feet.
As my daughter, Krista was learning to walk and experience her new world; I was learning to navigate my balance and fatigue issues. It was depressing having my dreams shattered. I felt left out of everything.
Working at the dentist office was becoming challenging. Every time I had a cancellation I would go into an empty treatment room and take a short nap. That eventually led me to go out into my car and nap. When I wasn’t napping I was dropping instruments or tripping. My weakened left side was becoming a burden. It was becoming impossible to work on patients.
I then moved to the front desk, the non-clinical side of the office. This was a test for my cognitive ability. All I had to do was answer phones, pull patient charts, schedule them and file the chart – easy right? NOT!! When typing Mr. Alfred’s name into the computer, my brain would say “A” but my fingers would type “S”. I would try again, but my keystrokes wouldn’t match. At the end of the day, I would find Mr. Alfred’s chart filed under “S” section. I was making a mess out of an easy job.
In 1993, there weren’t any disease modifying medications. My neurologist recommended some anti-fatigue medications and taking naps. His cognitive evaluation consisted of telling me three objects at the beginning of the appointment (example: house, bread, purple). Then at the end of the appointment asking me to recite those objects. When I succeeded he told me MS really doesn’t affect cognition. I was probably depressed or just tired.
My neurologist also recommended I stop working and go on disability. I was the breadwinner in the family, but going on disability brought up more fears: Would we lose our house? How will I be able to take care of our daughter while I was home?
Three years into my diagnosis and I felt so scared. My balance was terrible causing me to fall often. My brain was not functioning well either. I thought a wheelchair was right around the corner.
The first walking aid I relied on were a pair of Canadian crutches that went up on my arms and gave me more stability. Then, with the generosity of the National Multiple Sclerosis Society (NMSS) and my family I was able to buy an electric scooter. The scooter gave me confidence that I would not fall in public, but I was embarrassed to use it. I felt people were going to judge me because they wouldn’t understand how MS is so unpredictable. Some days I only needed the crutches and other days I needed the scooter.
Before MS, I loved exercise. I loved a good workout or a long bike ride. Now with MS, I had to redefine the word ‘workout’. I wanted something more than just sitting in a chair lifting weights because I was scared my leg muscles would atrophy. Talking to my neurologist, he agreed but cautioned me about overheating and getting fatigued.
Joining a gym with a pool was one of my best decisions. Starting off slow, I walked the length of the pool. Surprisingly, the buoyancy let me walk better. Slowly my balance started to improve. The pool gave me hope. I realized I could have a positive impact on my MS! To the surprise of my neurologist, I kept exploring new ways to help my mobility. Getting involved with the NMSS helped me feel more knowledgeable about my disease. I volunteered at events, attended every conference, and even became a peer support counselor.
Through the NMSS, I learned about Kessler Foundation and their research studies. Being involved in MS research was a natural fit. I participated in studies mainly about MS and cognition.
Soon, every year, more disease modifying medications were being approved. With the medications, my body began to have fewer exacerbations. In combination with swimming, I started needing the scooter less.
Research started to show a definite connection between MS and cognition. Some studies showed 40–65% of patients with MS have some degree of cognitive impairment, primarily involving learning, memory, and attention, as well as executive functions such as organizing, decision-making, and problem-solving.
In 2017 I saw a neurologist who specializes in MS who sent me for formal cognitive testing. I learned I did have some cognitive deficits. I also found out by doing so many cognitive studies at Kessler Foundation that I had ‘retrained’ my brain around some of the hurdles. So, by deciding to help others out I actually wound up helping myself.
MS is an unpredictable disease. Over the past 30 years, I have learned to “go with the flow” and control what I can, whether that is a swim or signing up for a new study to help with research. This past fall, I actually found myself cycling 13 miles with my daughter. I am no longer fearful of what will happen. I look forward to new challenges life presents me with. I believe in new research and advances that will help ease the daily MS challenges. I wonder what the next 30 years will bring.