For more than 10 years in the 1970s and 80s, my MS pre-diagnosis symptoms were very similar to those of some other ARMS Board Members -- sudden vision problems in one eye, frighteningly abrupt inability to walk, significant impairments in balance, muscle weakness, tingling and/or numbness in hands or legs, all topped off with bouts of overwhelming fatigue. Symptoms disappeared only to play “gotcha” with new surprise attacks. Every doctor wanted to attribute these strange anomalies to stress, overwork or depression.
After a hike with my husband and young sons to the bottom of the Grand Canyon and back in 1988, I was certain something much more serious than stress was causing frightening symptoms that hot summer day. During the hike I experienced blindness in one eye, frequent stumbling at the edge of deathly precipices, dizziness, muscle spasms, and weakness. I was fearful I was having a stroke and might die in right in front of my boys.
I returned home and demanded a more precise explanation for all these disturbing symptoms. After extensive testing and an MRI, my neurologist said, "You have Multiple Sclerosis. It is incurable.You will be in a wheelchair by the time your eighth-grader finishes high school. And, if you live to be 60, you'll be lucky!” In those days, before disease-modifying drugs existed, many women were told to quit their jobs and stay at home to “rest” and conserve energy. Thankfully, that doctor was “dead wrong” about me dying at age 60! I refused to embark on that path towards death. Eventually, I found a neurologist who listened carefully and helped me fight MS. With his help, I continued to work for another 23 years in the field of education.
Because of the assumption in those days that
people with MS would be dead by 60 or too disabled to benefit from treatment,
there is today very little research available to guide us and our clinicians in our
care. Without research,
insurance companies are often reluctant to approve medications that could very
well be beneficial.
Over the years, I have been following with great interest the research being published in the field of MS. I was well-aware of the ground-breaking work by the late Dr. Lawrence Jacobs’ that led to the development of Avonex, the most frequently prescribed drug for people with Relapsing Remitting MS. When, in the spring of 2012, I learned about a group that was forming to foster MS research, I was excited to become a founding member of what became ARMS. I am delighted to bring my forty years experience in the field of education as a SUNY Distinguished Professor, school district administrator, and special education teacher and researcher to my work on ARMS’ Research Committee. The committee spent several months reviewing current MS research. We were very impressed with the high caliber of research done right here by the University at Buffalo Department of Neurology MS research team. It has been a great honor as a board member to meet these researchers who eagerly collaborated with ARMS in designing a study that would be scientifically important and would also resonate with people with MS.
It’s now been 26 years since that fearful day in the Grand Canyon. I feel I am very lucky – not to have MS – but to be an ARMS board member and have the opportunity to bring a message of hope through research to others who have MS.