Brenda C

As a 28-year veteran special education teacher at Vandercook Lake Public Schools, I was looking forward to retiring in 2018. I had plans on working part time, gardening, camping, sewing, quilting and volunteering. Shortly after I retired, I began having difficulty hearing, sweating profusely, becoming easily fatigued, and easily frustrated. Shortly thereafter I began having constant vertigo. Thinking it might be an inner ear infection I went to the local walk in. I was given antibiotics and sent home 2 weeks later, vertigo was worse, and my balance was off leading to a fall at work. I was then sent to an audiologist and an ENT. Because of my past experience with an acoustic neuroma brain tumor in 2005, I was sent back to University of Michigan where I had had my brain surgery. My ENT ordered an MRI, where he found no tumor but something was not quite right. He arranged all kinds of tests for me and referred me to the ataxia clinic. Fast forward two months later I was told I had cerebellar degeneration, for which there is no treatment or no cure. After many more tests, it was determined to be Autoimmune/Paraneoplastic Cerebellar Ataxia. At that time my PET scan “glowed” but couldn’t determine definite cancer. A year later during a CT scan after a recent fall, my lymph nodes in my neck showed possible cancer. A biopsy confirmed Hodgkin’s lymphoma. I am now in remission, continuing my immune globulin infusions, and dealing with a “shrinking” cerebellum. The past 4 years have been ever changing, but I have learned to take one day at a time and never give up.

Two years ago, I began the Lower Michigan Ataxia support group, which is mainly through zoom meetings. We have had two very successful Walk n’ Rolls and brought in nearly $10,000 to the National Ataxia Foundation to further research for a cure for Ataxia.