Hi, I’m Canberk from Turkey. Actually, from Hatay, the southern city of Turkey. I was born in 1996. My childhood was quite good, we were always travelling and going on holidays with my family. It didn’t feel like anything was wrong with me.
When I turned 14 things started changing. I did feel little tremors and spasms in my hand when writing. At first, they thought it was just psychological symptoms. My diagnosis was delayed as a result of this. At some point we thought it might be a neurological problem, so we decided to book an appointment with a doctor. In the beginning, they could not figure out what caused the symptoms, but after the EMG and MR I was diagnosed with ataxia – nothing specific just a general diagnosis.
In 2016, we went to the University Clinic Tuebingen in Germany. At the time, I was in college, studying nutrition and dietetic. Eventually, they underwent some tests on me and I was told I have AOA2. I had no clue what this meant, and it was my first time hearing it. Even though I was clueless, I still felt relieved to have received a diagnosis.
After I graduated, my balance and gait got worse. This meant I probably should start using a walking aid, but honestly, I felt a little ashamed to do so. In the recent years, my balance deteriorated, so I am now using a walker outside the house. I used to be able to travel on my own, I even played the clarinet. However, ataxia took those hobbies from me. Now all I can do is visit shops and play Xbox games recommended for ataxia patients. Besides those, I like reading and I also enjoy watching films / series.
I do of course, do my regular physical therapy and exercise with professionals. Due to the fact that there is no cure for ataxia, I always try to live in the moment as much as possible.
Let’s live our best lives and do the things we want when we can! 🤟🤟
