Marybeth Barker

Shortly after returning from a once in a lifetime vacation to Turkey in 2010, at age 58, I began to experience odd neurological symptoms and profound exhaustion. I felt like I was bobbing up and down inside as if I were on a boat or as if the pull of gravity on my body was fluctuating. My symptoms weren’t obvious to others at first and I found it hard to explain what I was feeling. I sought medical care but initially nothing was found. I tried to write it off to exhaustion, stress, delayed jet lag or sudden mental illness. Within a few months I began to develop an obvious tremor in my hands and head and a jerking motion (chorea) in my right arm. Though an autoimmune disease was suspected it took close to 18 months, several changes in doctors and endless diagnostic procedures before I was eventually diagnosed with Sjogren Disease. Though not common, in my case Sjogrens caused damage to my central and sensory nervous system causing damage to my basal ganglia and Cerebellum. Though my neurological and other symptoms have improved since 2013 with frequent infusions of Rituxan I continue to live with cerebellar ataxia which effects my balance and mobility. I use a wheelchair one hundred percent of the time in the community and about seventy percent of the time at home.