Diagnosed with FSHD a long time ago
Well, when I was a child I was able to walk till I was 7 years old. My muscular dystrophy is very extreme. However, I was also able to skate on ice. I stood on skis while I tried to ski, don’t ask me how, because I fell on the ground very often while I was trying to cycle on my bike, but also I skateboarded on my knees and used my feet to move forward. I was able to visit my grandparents nearby and leave the wheelchair behind, in the garage. My powerchair was and is still my freedom, it is my legs.
In 2014 I started to exercise in the gym under the supervision of my physical therapist. The goal is to slow down the process of becoming weaker, to stay in movement. In the present now I am not able anymore to lift my right arm which was the strongest one, I need to do concessions and ask for more and more help. It’s hard, but you need to look forward and accept the situation.
I think I never thought about how to give it space. I asked my dearest friend and caretaker how to do all this, she said to me you are doing it well and accept it somehow. For several years I do mindfulness, to avoid pain and struggles. I do not use any pain medication; only medical cannabis and I live a healthy lifestyle with nice food and feel so much better. There are bad and good days and the good days are always winning, also when I am suffering pain strokes every day.
