After living a very active life filled with (volunteer) work, sports, and hobbies for the first 70 years of her life, Margaret Evans Albert had to change her habits. She was diagnosed with spinocerebellar ataxia (SCA3) which had a big impact on her daily life.
SCA3 hit me late in life. I was 70 when I learned about it. I was always independent, I’d had a very full life; taught first grade for 30 years, taught swimming, cheerleading coach for high school, on many boards (local, district, state). After retiring, owned an antique shop and traveled a lot. I had no idea what was in store for me.
I knew I needed extensive back surgery. One eventually pays a price for being involved in sports through junior high into college.
I wanted a teaching hospital, not our small rural one. I chose a nationally known one downstate. After 6 hours of back surgery and sitting up only 15 minutes per day I went back for my final exam after 6 months. The surgeon said I shouldn’t be on a cane and something else is going on. He sent me to the hospital’s neurologist and did testing and doctor appointments for a year. They found nothing so sent me to their geneticist and their tests found SCA3-inherited.
That year was 2017.
My maternal grandfather walked like he was drunk so I was told because he died in 1950 when I was 4. I assume my mother was a carrier but her sister had balance problems. We thought it was old age. A cousin was diagnosed with MS but if they never did genetic testing they wouldn’t know.
The symptoms hit me hard in 2019. When I was told, “it’s progressive,” I didn’t realize what that meant. I was in denial. I thought I can use a cane and for 2 years I did. I volunteered all over, was an advanced master gardener so planted beauty all over town, in a gourmet group 19 years, cross-stitched, sang in the church choir, restored our 1896 home, chosen Woman of the Year, wallpapered the whole thing, plus put 2 ponds and gardens in where there was nothing, was on church session, organized several groups for AAUW, even went to Italy for the sixth time on a cane! No problem!! Reality brings one back very fast. All my volunteering and love of doing all my hobbies had to be rethought or forgotten. I had been taught to give back to others by example and I was sure I got more gratitude from helping people than I could ever give.
I now use a walker in the house and a wheelchair when I go out. We’ve sold the big house and are in a one-floor condo. We live closer to doctors downstate. No 5,000 sqft home with loads of garden work anymore. I take each day at a time. My husband of 54 years now does almost everything. I’m still having depression but it’s better. I mourn the loss of all my activities. I am involved with two Ataxia support groups on Zoom. One doesn’t know what the future will bring. Stay positive and enjoy life!
Thank you Margaret for sharing your story!
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