Never say never…
It was suggested I place part of my story on paper as it may help other people with spinocerebellar ataxia. I was diagnosed in 2014 by a neurologist as my gait (the pattern that you walk in) was getting larger, and I was running out of energy.
In June 2022, I was placed on a new diabetic drug, which I administered at home on a weekly basis. I was on the full dose but started experiencing numerous problems. I was falling over frequently, experiencing vertigo, and my tremors were worsening. Despite discussing these issues with the doctors during my visits, I couldn’t find a solution. When my carer took me to the general practitioner one Tuesday, I received a lecture about my diet. I knew something was wrong, but my concerns were dismissed.
The next thing I remember is waking up to a man slapping my face and calling my name. I had slipped into a diabetic coma, and my caregiver found me. I experienced hallucinations and ended up having a partial toe amputated due to an infection from attempting to get up from the floor after I had fallen.
In January 2023, I suffered a vertigo attack and ended up stranded on the bathroom floor for hours until my caregiver arrived. They had to break into my place to reach me. I was taken to hospital where I contracted COVID-19. Despite my insistence that I needed to move, I was confined to a bed, resulting in a severe rash due to lack of care.
When I was finally able to get out of bed, I discovered I had lost complete use of my legs. I spent three months in rehab and was told the chances of walking again were very low. I was discharged on the condition that I use a wheelchair, which was incredibly challenging, but preferable to being stuck in the hospital. However, after just two weeks in the wheelchair, I decided it wasn’t for me. I was determined to walk again.
Around October 2023, I began using a walker to organise myself. My physiotherapist and caregiver worked tirelessly with me. By January 2024, I had walked over a kilometer with my walker and a walking staff, which I now incorporate into my routine. It’s been a no-pain-no-gain journey, and the staff I use is similar to the one Gandalf used in The Lord of the Rings movies. Standing at 194 centimeters tall, the staff keeps me upright and helps maintain balance, which is crucial with ataxia.
Recently, I’ve been going to the pool with my physio once a week and doing water exercises. The water relieves the pressure on my legs while allowing me to exercise effectively. Initially sore, I now appreciate the benefits of these sessions. We walk laps in the pool, do leg presses with a noodle, and use rubber bands for arm exercises. Since I started walking again, I’ve lost approximately 15 kilograms, making walking significantly easier. If I can defy odds, I hope I can instil some hope into whoever reads my story!
