Living with Olivopovtocerebellar atrophy
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I was blessed with 40 years of living a "normal" life. I used to be able to wear tall heels, dance, and was in pageants. My entire life I was considered clumsy. It wasn't until about 2013 that I felt that something was truly wrong with me. After a year of yoga, my doctor finally sent me to a neurologist who was able to make my diagnosis. At first, I didn't really understand a lot about it. About 6 months later, I went into a severe anxiety attack and a mild depression. I am a school teacher and was losing my ability to write. I had to start using a cane to help with my balance and would slur my words on occasion. I finally "hit a brick wall." I couldn't get out of bed for a week. I was mourning the life I lost instead of living the life I still had.
I began taking medication for my anxiety and hand tremors. I bought the snazziest cane I could find to help me feel better about having to use one. I also started going to therapy (not physical- mental). All of this has helped me greatly.
Later, I began thinking about why I have this disease. I am strong in my faith in God and knew that He would want me to use it for His glory instead of just feeling sorry for myself. I began a support group for anyone with any type of a rare disease and their caregivers. We meet once a month and it has been such a blessing to me.
The only thing that scares me is my life expectancy. "They" say it's about 15-20 years after diagnosis. I don't like that. I want to live a long life. I am still working right now but have had to change grades (Pre-K) to accommodate my disability. I guess I need to just keep living every day that I have and make the most out of it.
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