I am the master of my fate, I am the captain of my soul.
I was a “normal” young Italian boy like every other young Italian boy: in love with soccer, pasta and holidays at seaside. I was, until the age of 8.
I still remember the feelings; my feet were weaker than before. Falls were happening almost daily. And I can still see the red color the disinfectant was leaving on my knees. Something was happening and I was not able to understand. Like a soccer ball I was bounced from one doctor to another. No definitive answer.
Until that day…I can feel again the pain of the needles into my calves and the electricity flowing into my legs. Charcot-Marie-Tooth (CMT) Disorder Type 2, this was the answer for the two of us – myself and my little sister.
What is it? Why me? How will the future look? No definitive answer. Again.
In the darkness of that moment, a light was shining; surgery could be helpful for myself and my 6-year-old sister, to perhaps remedy the foot drop. A new hope in the eyes of my young parents. The same day both of their children would undergo surgery, which meant long hours waiting outside and praying to God for the best. Plaster casts on both legs, at the same time, the two of us. A week in the hospital, then a long period in a wheelchair afterwards. I still remember the day we removed the plaster casts, and that feeling of freedom that I was about to try again. The excitement…I was about to feel my feet and legs powerful again. Until the moment they cut the plaster casts. Muscles were faded away. No improvement at all. CMT has taken the opportunity to anticipate the future. My legs were not like this before surgery. What happened? Wasn’t the surgery supposed to fix the problem? How the future will look like? No definitive answer. Again.
Despite this we found the resources to react. The following years have been nice, scary, nice, confused, nice, challenging. My thighs were still strong, able to compensate for my “skeleton-like” calves thanks to the modest support offered by plastic AFOs. I was able to do almost everything. Almost.
Until that day, it was mid-May 1999, when I was visiting a CMT-specialized clinic in Rome where I used to go almost yearly. My physiotherapist Carolina introduced me to my first ever pair of ToeOff® AFOs (Ankle-Foot-Orthoses). That was my “love at first sight” moment with ToeOff®. Weird feelings at the very beginning. I needed to learn again how to walk. I needed to retrain my brain, my body, my legs. Not easy at all. But I did it. What will my future look like? Definite answer: amazing. I was born on October, 22nd 1985. But I was born again on that day of mid-May 1999.
I was again that normal young Italian boy as every other young Italian boy: in love with soccer, pasta, holidays at seaside…and girls (as I grew up). I was able to do everything, no longer “almost” everything. Everything. My ToeOff® totally replaced the functions of my calves, allowing me to walk to school every day, play sports at school, play soccer with friends, ride my BMX bike, and to be confident around my peers and girls. I finally felt “normal” again.
As I grew up, my CMT has slowly progressed and I moved from the ToeOff® to the BlueROCKER® AFO for a stronger support. I slightly adapted my lifestyle and my habits, in order look after myself and my CMT more carefully, but my life is still amazing. If not more than before. I’ve been using ToeOff®/BlueROCKER® for more than 23 years now…and they’ve been my mates in all special moments of my life: my degree in medical biotechnology, the day I started my job in the pharma business, the day we took home our Labrador puppy, my wedding, my daughter’s birth, my trips and vacations all around the world, my daily sports activity, my swimming competitions, the day I was promoted to an executive position, the moments I act as motivational speaker for others.
Today I live a spontaneously normal life….thanks to my motto “I am the master of my fate, I am the captain of my soul”…but also thanks to Allard.
Jacopo Parizzi lives in the countryside outside of Milan, Italy with his wife Shari, daughter Margherita and 10-year-old Labrador named Mambo. Jacopo works as a motivational speaker, presenting talks about diversity & inclusion and disability. He enjoys world-wide travel, various sports and is looking forward to resuming competing in open-water racing as a paralympic swimmer this summer. His goals are to continue “to be a present and loving father and husband, grow as a leader at work, and to remain fully autonomous in life, despite CMT.”
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