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.
When Were You Diagnosed? Which Type (If Known)?
How Has Ataxia Impacted Your Life?
I had to retire from my job as a social worker long before I was ready. Though I’ve adjusted after more than ten years I still miss certain activities I used to enjoy such as hiking, yoga and cross country skiing.
What is One Thing You’d Like the People to Know About Ataxia?
That built and many natural environments are not easy for people with Ataxia to navigate. Respect the adaptations people with Ataxia make in order to get by.
Share Your Advice – How Can Others Support Someone with Ataxia?
Ask if assistance is wanted or needed before rushing toward someone and touching their body unexpectedly.
How has NAF Helped You or Your Family?
Reading others stories and learning more about the various forms and causes of Ataxia makes me feel less isolated. I’m relieved to find a community and organization I can trust to ask questions of and seek advice.
What is Your Ataxia Story?
As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.
Are you here to read the personal stories, but haven’t yet joined as a member? We hope you find comfort in reading about the experiences of others on their Ataxia journey. We invite you to join as a member to receive a new member story each month. It’s free, and you’ll be kept up-to-date on the latest developments in the Ataxia community.
Recent Member Stories

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 Read More…

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Adam Nelson
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Lim Siah Gim
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