Hi! My name is Kristin and I have MS. I was diagnosed in May 2013 with RRMS. My MS symptoms were very manageable. Fatigue was my biggest challenge. Even that was manageable because I taught online classes. In 2013, I was living in Hawaii, working as a tenure-track assistant professor at George Washington University. I am a nurse and taught in the graduate department in the School of Nursing. I taught research and statistics to masters and doctorate students.
In 2014, I was selected as a Harvard Macy fellow at Harvard University. During the fellowship, I learned about advanced strategies in healthcare education with some of the brightest minds in medicine and nursing. My daughter Katie was in first grade and my son, John, was in preschool. By all accounts, my life was going well and my career was advancing by leaps and bounds.
I attended the fall session in Boston and had the time of my life. I was surrounded by academic people who thought like me and geeked out about research just like I did. I enjoyed attending lectures, small group discussion, and journal club. It was a life-altering experience and at the end of the two weeks, I was prepared to go back to DC and share my findings and start a year-long project to improve how we taught at GWU.
I starting having difficulties during the winter months of 2014: forgetting appointments, having difficulty answering students questions without first reviewing material, and especially participating in committee work that I previously enjoyed.
I discussed my concerns with my neurologist who didn’t seem concerned. As MS was new to me; I followed his lead and put my concerns aside. Everything I read focused on the physical effects of MS. So, I believed my fatigue was the cause of my problems.
Fast forward to the spring session of my Harvard Macy Fellowship. I was so excited to return and present the results of my project and to see my friends. When I returned, things were very different. I was having a very hard time keeping up with the speakers. It was like trying to drink from a fire hose. I tried to participate but I had trouble finding my words. What started as an amazing experience had turned into a nightmare. I found myself leaving classes early and avoiding the small group classes and journal club because I was embarrassed I couldn’t keep pace with the discussion. The worst part of all was when it came time for me to present my project and its findings. I couldn’t remember anything I wanted to say and just fumbled my way through the presentation. I was personally and professionally humiliated.
I returned home and the long two-week session and started doing research about possible cognitive effects from MS. I was shocked to read 50-60% of people with MS experience some form of cognitive impairment. My doctors had never inquired or assessed for any cognitive symptoms and brushed them off when I initially mentioned my concerns.
As a researcher, I dug in deep to find as much information as possible and how to assess for cognitive impairment and how it could be treated. I returned to my neurologist's office armed with research findings, my desire for a neuro-cognitive assessment and a referral to a neuro-cognitive psychologist. Fast forward a few months and I was diagnosed with a mild cognitive impairment. The tests results confirmed my difficulties were not due to fatigue but were directly related to MS.
Little did I know the road ahead was paved with many bumps and potholes. I’ll tell you about the long and painful journey that led to my retirement; my fight for long term disability insurance benefits; and how I have learned to carve a new path that accepts my limitations and makes the most of each day.
