Hey everyone, my name is Monika. I am a 47-year-old widow, and I would like to share my journey of living with Cerebellar ataxia, a genetic condition that has profoundly impacted my life.
I inherited my ataxia from my father, whose mother also had it. It was a shock; I was never good at sports or dancing, but I did well academically. I speak four languages besides English and Slovak.
I am originally from Slovakia, and I have lived in the UK since 2000. My late husband Ian was my rock. There was a 36-year age gap between us, and although we had no children, we shared a wonderful life. He was very worried before my diagnosis in 2016, fearing I had a brain tumour. He was older, but our 18 years of marriage were blissful, without a single argument. His passing was hard. He spent three months in the hospital before losing to lymphatic cancer.
We lived in a housing association house, with stairs. Thanks to the housing association, I now live in a decent place with no stairs, which is essential for me. The biggest challenge for me was the staircase in our old house. I started using a walker in June 2019 after a hospital stay. Before that I leaned on Ian. His passing was a great shock. With stage 5 cancer, he was suffering, but now he is no longer in pain.
Ataxia may seem like a mere inconvenience at first, but its progression can be frightening. For me, the word “progression” is particularly scary. Twenty-five years ago, I was a top cleaner in London and worked as an au pair. Now, I need a cleaner myself. I was never good at sports, running or dancing, and I don’t miss those activities now. Instead, I focus on full acceptance, consuming nutritious homemade dishes, and core body exercises. I take vitamins, mainly vitamin B, collagen, and vitamin A (from carrots). Staying positive is crucial because mental health is most important.
Although my balance is impaired, I have a healthy functioning brain. I make my own decisions and can prepare meals safely. In addition to ataxia, I have allergies and eczema, but everything is manageable. The real challenge would come if my cognitive abilities declined.
My reflexes have slowed, and I do not like walking outside, especially around barking dogs or people. I have a lovely neighbour. I know this is an awful condition, but I cannot beat myself up for having it. It just happened, and no one is to blame. Remaining calm, practical, and not easily frustrated is key.
