Looking back Becky Lacroix saw multiple things she now can attribute to Ataxia symptoms. It took a few years to get diagnosed with SCA 28. Since then, educating herself and being active in support groups have been most helpful to her.
My name is Becky Lacroix and I live in Muskoka, Ontario. Since I was little, I was always clumsy but it wasn’t a medical concern. Coughing had always been chronic since I was approximately 5. I have always been afraid of falling, slipping, tripping, and being lifted. I have never felt stable while standing. After the birth of my first child, I recognized that I was scared of the stairs in my two-story home, but just thought it was fear and nothing else.
Then in my mid-thirties, I saw a neurologist. He was very thorough, ordered an MRI and blood tests to check for Multiple Sclerosis. There wasn’t anything unusual in my tests, but he kept searching. Upon further exam, he noticed my eyes would mildly shake when I would look side to side, so he decided to send me a geneticist. I signed the papers to approve sending my blood to a lab over the border to check my genes in August of 2018. Waiting was hard; I didn’t want to tell anyone and tried to keep busy to distract myself. October 2018, at the age of 44 I finally heard the news that by testing 46 different genes it was found I had Spinocerebellar Ataxia Type 28. I asked my genetic counselor a million questions about it and researched online. It is slow progressing, hereditary, and dominant. There has not been a previous diagnosis of this in my family, but there are some things that stand out such as an Aunt with Parkinson’s.
I have 2 kids and have discussed it with them. I have a mobility specialist in Toronto and a general neurologist locally for other issues. I am very thankful for this group, the other groups on Facebook, and the small number of friends in the world who also have SCA28. Education and the support group set up by Mark Desa have been the most important things for me. For anyone having trouble adjusting, I highly recommend education. As one of my doctors said when I apologized for my many questions ‘it’s YOUR body’. It’s important to know exactly what’s going on. It took me a while, but I am now able to openly tell strangers, friends, family why I stumble or don’t want to participate in something. It’s a struggle mentally, trying to adjust to my life, my thinking, and my future.
Accepting your situation requires continuously making adjustments to your current needs. Thank you, Becky Lacroix, for sharing your experiences with us.