The other day I got asked to write a letter about the importance of physiotherapy for someone with AMC, believe or not I´m very bad with letters and emails, Mike - my husband- usually writes them for me but, I really wanted to write about this topic. So, I explained to the person that asked me for the letter, that I would love to write a blog post about it, blogging comes more natural to me, it´s like talking and loooove talking, thankfully she thought it was a great idea. So, here it is.
When I get asked about what has been the most important thing for my ¨recovery¨, I always answer physiotherapy. You see, when I was born the doctors didn´t know the diagnosis, but what they knew was that I needed Physio, so I started even before I left the hospital for the first time. My mom was discharged from the hospital a week after I was born, but I had to stay for a month, until they came up with the diagnosis. In that month my mom went back to the hospital every day, not just to see her baby but to make sure the physiotherapy was getting done. When I finally got to go home, was when the real work started, my mom had been paying attention to every movement the physiotherapist was making, and she even hired some to come home to teach her more about how it had to be done. Since then my mom became my main physiotherapist. According to family stories, she wouldn´t let not even an hour without stretching me. The great thing about it, was not only the good results we were getting, it was also that mothers have an intuition of what is good for their kids that is bigger than anything else in the world, and in cases with mothers with AMCers, this intuition can help you achieve EXTRAORDINARY results.
My mom´s intuition always took us that extra mile, and in things related to physiotherapy even more. Physiotherapy had been ALWAYS the most important thing in my life, it was second to nothing, for the first six years of my life I will have Physio from 8 am till 1 pm in a physiotherapy center, that combined all sorts of therapy, gym, hydrotherapy, occupational therapy, etc. after this we would go home and more therapy awaited, we used to go over what had been done in the morning to practice it.
When I turned six I had to join school, and my routine had to change, I only had two hours of therapy a day in the afternoons. This period was ok to ¨maintain¨ what had already been achieved but not notorious changes happened, it was when we move to Cuba when I was ten years old for a surgery that I went back to full day physiotherapy, this was the most intense therapy I had in my life, my mom found a hospital that specialized only in physiotherapy, we used to get to the hospital at 6 am and leave at 6 pm. My schedule was like this: - 6 am Sensory Massages (The back of my feet were hypersensitive after all the surgeries and you could hardly touch them, so this helped a lot) - 7 am Electrotherapy (Muscle stimulation) - 8- 11 am Gym - 11 am Occupational Therapy - 12 pm Lunch - 1pm Electrotherapy (Muscle stimulation) - 2 pm Gym - 3 pm Hydrotherapy - 4 pm Occupational Therapy - 5 pm Sensory Massages
This was everyday, Monday to Friday for a year and half, it was no piece of cake, There were moments so painful that my cries caught in my throat and my mom was asked to leave the room, in all my life I´ve never, since I was born, heard my mom saying ¨Don´t do it... This is to much¨, except in Cuba. It was not fun, but it had to be done. Cuba is where my body changed, my hands were able to button up my shirt, I was able to drink from a cup with my own hands holding it, put my shoes on, I got showered and dressed all by myself, all of this for the first time and it was thanks to the physiotherapy treatment I received in Cuba. When it was time to come back home, my mom didn´t want to lose all the benefits that the full time therapy was giving me, so she brought a therapist with us to Peru from Cuba. He lived with us and the two years that he stayed was what settled me into what is now my life. It was like having a coach with me 24/7 that checked my every movement and when I did it wrong or tried to go back to the old ways of holding a cup for example he was there to correct me.
As you can see, Physiotherapy has been not a big but a HUGE part of my recovery. One hour a day wasn´t enough for me, the more the better results I got. The surgeries are fine to correct postures and to help the physiotherapy achieve goals, but without physiotherapy I would still be all curled up, with my hands will be so stiff that you couldn´t get them away from my arms, my thumb would still be touching the palm of my hand and not allowing me to hold my cup up for a toast or simply button my jeans up after I got out of the bathroom in a club, without therapy I would still scream every time you touch the back of my feet because the pain was unbearable, without therapy I would not be able to do the simple basic tasks in life, like cover my mouth as I sneeze, clean myself up after I go to the bathroom, brush my teeth or simply cook a meal for my husband, so if you ask my how important Physiotherapy is, I will tell you Physiotherapy is a human right.