For today’s Ataxia Profile, I am featuring a lady from Salem Oregon. She and her husband Ray attend the two same Support Groups that my wife and I attend…and it is my pleasure to introduce Celia Baculi to you. I am going to let Celia tell you her story…in her own words.
I was 52 when I was diagnosed, in 2016. I was diagnosed based on my MRI and symptoms. I am a medical mystery–I have been genetically tested but I was negative for everything. I am hoping to retest in a few years and have a specific diagnosis then.
Before my diagnosis, I volunteered at the local high school in pre-college planning. It was brutal to give that up, but eventually, I became too tired to spend a whole day or even a few hours at school. I can still sew/knit/crochet, so I try to do a little bit each day to keep my fine motor skills up.
Before ataxia and children, I was a manufacturing consultant and got to travel around seeing factories (one of my favorite things).
I speak Spanish well, and it is on my bucket list to spend some time in southern Mexico or Guatemala in the Mayan culture. I know a lot about Spanish books for children also.
I go to the gym several times per week with my husband, and I also do physical therapy, strength training, and Pilates training. I also take Riluzole, 4AP, CBD, and I would like to try Tanganil. My sons and husband tease me mercilessly about being a pothead, but the CBD helps me sleep. I know a lot about importing medicine (there is an exception in customs law), and I am very good friends with Mr. Google. I do tDCS regularly and wear my balance vest. I wear sticky socks all the time and they help! Handwriting practice also helps when I remember to do it.
I attend the support group meetings in Albany and Portland (Oregon) when I can.
I no longer drive, so my high school student son takes me to some appointments. My family has been an absolute rock with this difficult, unplanned turn of events called ataxia.
If I could give advice, I would repeat what a dear friend said to me a long time ago, which is to allow people to show how much they love you! I would also say to take things one day at a time like you were parenting a small child. Make it through today, and let tomorrow take care of itself. We are really lucky we are living today, with hope for defeating this monstrous disease, and I am hopeful that something will be discovered that will benefit us.
Thank you, Celia…for sharing your story with us. We all continue every day to live, and strive to learn, the best ways to deal with Ataxia. Your story has become an important part of that process.
Until next time my friends, Jason