Advancing Research in Multiple Sclerosis
I once managed a thriving business. Now I manage the symptoms of the multiple sclerosis which has made a dramatic change in the life of my family and me.
A degree in physical therapy from SUNY Buffalo was followed by the opportunity to practice PT in many settings; first in home care, then hospital rehab, outpatient and nursing home, then as a private practitioner in a consulting business, with a partner, providing PT to children who had physical handicaps in public schools. As the demand for services in the schools grew, we hired full time therapists and worked in many school districts in WNY. I provided and attended continuing educational conferences, mentored 5-15 employees and was a clinical instructor for UB and Daemen College physical therapy programs in addition to providing treatment to a caseload of pediatric students needing PT service. The majority of students I saw had impairments that were neurological, affecting their ability to fully participate in their educational programs.
The first major MS exacerbation I experienced in 1994 led to the diagnosis of MS. At the time my two daughters were preteens, and they along with my husband had to pick up the slack in household chores because of my profound fatigue. I began receiving a disease modifying drug in 1999. The accumulation of symptoms, most of which are invisible, forced me to stop practicing my profession in 2000.
Self advocacy is important and MS is a confusing disease. I was very fortunate to find an occupational therapist who had expertise in teaching strategies for dealing with the “invisible symptoms” sensory and cognitive in nature, and a physical therapist who taught me exercises to manage my weakness and balance problems.
MS symptoms change from day to day, and the disease course, along with the symptoms, can change over a lifetime for any one individual. It takes a remarkable team of health care providers to gather and analyze enough patient data, and possess the experience, insight and persistence to create life altering changes in treating and managing this challenging disease. The research taking place in western New York is being done by such a remarkable team.
Being a member of the ARMS group to support research done by remarkable researchers gives me the satisfaction of facilitating progress in the quest for answers about the future with MS.