Margaret Evans Albert – Stay Positive

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!