Celebrate the WORLD STROKE DAY together – 29 October 2018
On the occasion of World Stroke Day and in collaboration with the International Alliance for Pediatric Stroke, we asked our community to answer these questions, to tell us what forces they have put in their field to get up and that Flavor now has the new life: ' How did you get up from such an important trauma as stroke? What is the new normality of life today? What has been useful, thinking of entering or returning to school for your children? What advice would you give to plan a new life interspersed with numerous therapy sessions? As parents, what have you done for yourself, to regain a personal well-being? In the shoes of a young man who had a stroke, what was useful to readapt in society after the stroke? '
The story of Riccardo
My life after prenatal stroke
First of all thanks to my family. Thank you for what you have done so far, from accepting me for what I am physically to the tenacity you have employed to make me grow. Long years of intensive physiotherapy that did not cost me fatigue at an early age, but that have become a heavy boulder during adolescence. Every time I saw myself confronted with my limit.
It is difficult to write this letter to me; A little ' cause I do it very few times, a little ' cause I'm afraid to testify and highlight my current feelings and emotions. I had a very difficult life compared to my peers, already as a child I was in contact with the real reality and not that naïve, sweeted, mixed with unachievable dreams. Many times I wonder, "Why can't I be like the others? How do I fill this gap determined by disability with others? ". I still do not find, after many years, an answer and an explanation to these two questions; But I know at least you are there and that's why I have at least six shoulders to lean on. I hear, many times, the need to have real friends but, unfortunately the words "loving" Some people have made me suffer because in this way I have to think of two things: look for friends and look like an empathic person when they are out with others, then expose me Emotionally. I do not know how to behave in these cases, I prefer to remain motionless on the couch feeling like a vigilant urban always firm on its catastrophe as Alda Merini says instead of trying to go out and maybe enjoy as much as when they are from my only friends. I'm afraid, afraid of not being ready to experiment and sometimes go ahead and not live up to the expectations of others. Expectations, many times, produce disappointments; Disappointments that I cannot afford to fill that "famous" gap to which I meditate constantly. Failing me is almost unforgivable at times; The mind and the heart must think and act also for the external part of the body remained in deficit. Everything has to be kept under control, everything can not be accomplished, and after the disappointments that I had most likely my rational part had the best on the emotional one. Observing, meditating, mulling, decomposing actions and then most of the time resign myself to the thought of "not being able" to perform and do things. This I think: "Why should I be able and not someone else", "Why should I choose me?" It's true: I need help, for example the physiotherapist helps me to improve myself and be a better guy. I have always liked the desire to improve also to help others always and not only when they are in trouble. I am always undecided and I stop even just in front of small logistical details, how much I would like to stop thoughts and live lightly.
In all of this my school path has undoubtedly been marked by my emotions, sometimes I have not transposed the aid, sometimes I emphasized the criticisms. Now in high school, my tutor, the philosophy professor, I consider it as a refuge, as my second "home". Use philosophy to direct my thoughts to the attainment of my ideals. It's protection for me.
I end this letter with the intent to continue this long history together struggling, but with hope and smiles.
I embrace you!
The story of Annamaria
My life after stroke had at 9 years (1979)
I remember everything as if it were now, it was a day like many others and as a thousand other times I was at the Italian Tennis Federation for my weekly course. That day was dedicated to athletic training, it was the part that I liked least, there was less competition, it was a different job to be on the tennis court during a game but it was still important and I would have given the best of me. The teacher was categorical with all of us: no discounts, 10 laps of running the athletics track and then we will work on the shot and speed. It was interesting. I took the 10 rounds and from there began my most important game, the one in which you have to play each point to the end by giving the maximum!!!! The diagnosis was "ischemic stroke in the subcortical area, Capsulo right gangliobasal infarction (major striate-capsular infarct) with left spastic hemiparesis focused at the distal crural level. Initially I do not think I thought of anything, I did not realize the Emiparesi, I did not realise. The NPI physicians were shocked at the way the event occurred. But it is thanks to them, to their competence, humanity, honesty and stuariness and to that of my parents if I managed to get up and recover a lot. They stimulated and beat the agonistic part that was in me and they always believed that I could get up. Unfortunately, an important dystonia was suffered at the left foot, a resistant and very painful drug, at a distance of a few days, while there was in parallel the phase of recovery from the emiparesis. Even today this is something that brings me a lot of pain and physiotherapy. Life still resumed its course. I came back to school and the teachers here were unique. We were a class of about 20 children quite agitated, when I returned to school (I had to make a quiet life, I was under gardenal), I found a class of "Little Angels", All quiet and ready to make the games that I wanted: the only obligation imposed by them, having me Strictly after-school to get together and recover the lost time and stole from our friendship. I think what happened to me was a lesson in life for me, thanks to all those who have surrounded me and helped in their own way: from the nurse "bad" (only in my eyes) because he wanted me to cut the meat alone, to the doctors who fought like lions with the Means of then, to my family in whose eyes I always read sincerity, affection and determination. Many interventions, many experiences, many different approaches to the problem and then to contact with a neuro-orthopaedic French that, in addition to correcting in part my problem with the foot, has made me a master of life and then joined my current kinesiologist who was For me fundamental and allowed me to avoid in full the wheelchair, that other orthopedic had proposed, even allowing me to return to the tennis courts no longer to compete but to have fun. I can certainly say that I have won my most beautiful game thanks to a wonderful teamwork.
The history of Francis
Narrated by his parents Daniela and Marco
Franci is an 11-year-old boy, with multiple disabilities caused by an anoxic crisis of unknown origin, had at six months of life and which caused him tetraparesi, blindness and epilepsy.
The arrival of the disability in our family was like a hurricane that shocked everyone. After the intensive care period, a few months of admission to the Institute were followed by our family of Bosisio Parini for the path of exit from coma. Franci came home in a state of total unapproverability: He actually cried and screamed all day and all night.
It was Teresa, a stimulating therapist based on the Holmann foundation of Cannero, the first person who managed to get in relationship with Franci making the most surprising and simple discovery that could be done for a child of one year: Franci was crying out of boredom and Fear. When it was put in the conditions to do activities that he showed to like the weeping was changed in attention and joy. From this fundamental episode for the life of our son we began to understand how imported are the proposals able to arouse his curiosity and his interest: hence the transition to the attempt to promote the cognitive development of Franci is been short. The only thing we understood was that Franci wanted to communicate and that somehow tried to say yes and no. After a few years of research finally, Franci started the alternate alternative communication route coordinated by the Centro Benedetta D'intino in Milan. Through a technique called auditory scanning assisted by Franci partner can now choose, Express, comment and tell experiences.
For us, the entrance to the school was a fundamental step in Franci's life: We believe that school is the best environment to allow children with disabilities to grow and develop their skills. Only by comparing peers is the desire to communicate and to improve themselves by seeing what others can do: what he knows how to do, I can try to do it myself.
Thanks to the augmentative alternative communication today Franci in many subjects of study succeeds in following the programming of class: Franci cares very much to go to school prepared and with the tasks done. You think that one day, at a party, a friend of hers said to me: "How is it possible that Franci arrives at school knowing the lesson better than me?".
The life of today is strongly marked by the needs of Franci and by the difficulty given by the accessibility of the places. Whenever we want to do something we have to ask if we can get there, whether the public transport is accessible or, if we go in the car, if we manage to find parking, and finally if we could enter. The major waits are linked to the non-accessibility of the places. It may seem trivial, but going to the cinema or theater is not so simple.
Today, and unfortunately even in the future, the difficulties are still many because the level of autonomy of Franci is virtually nil. Besides the purely rehabilitative part, which is limited to two weekly sessions of physiotherapy and one of hippotherapy, there is also a session once a month of alternative augmentative communication. Until last year Franci frequented the play space of skill and swam, the entrance to the secondary school of first degree imposed a momentary revision of the commitments.
Find leisure activities for FRANCI without it being directly managed by US parents seems utopian.
In order to manage this plurality of activities to which the weight has been added, albeit physiological and necessary, due to the entry into adolescence by the elder brother Alessandro and also, unfortunately, the need to manage the demands of a bureaucracy Increasingly intrusive and phagocytic, had as a result a stop working on the part of Mother Daniela. This painful working deadlock will have to be overcome as soon as possible because we believe that without the valve of discharge of the work, the load of the family management of a boy with multiple disabilities is too heavy and threatens to annihilate the Person.
Our choice has always been to not do too many therapies, if we had looked at everything that Franci could not do, he would have to do 20 hours of therapy a day. We have made a choice in part against the current, to restrict therapies and to focus on the school and the possibility of franci to grow in comparison with peers. His desire to do and to go beyond his limits was the strength that allowed him to improve every day.
To date Franci continues to improve, even the predictions were only improvements in the initial phase and unlikely after years.
We believe that the right balance is not by sacrificing any part of the family. For example, when Franci was about 3 years old, we had to give up doing some intensive admissions, because his brother Ale was no longer holding our absences (9 months in the first two years). We then chose to do only the evaluation DH and searched the territory for a solution that would allow us to have good results in the rehabilitation field.
Being able to not lose the balance of torque is not easy and discounted at all; In fact, unfortunately, we have seen many couples melt in conditions similar to ours.
We were fortunate enough to be able to participate from about ten years to a week in summer to a family camp organized by Stimmatini in Bosco Chiesanuova. For us it was a fundamental moment, because it allowed us to rediscover the space of our couple and to confront other couples (without children with disabilities) on wide-ranging topics and what guides us in the choices of every day. Choosing how to invest your time and your money affects all couples, more than those where there is a child with disabilities, where time and money are scarce and precious goods.
Always to find time for us as a couple we chose to send on holiday the boys with some projects organized by the City of Milan, this has allowed us to get out of the frenzy and the daily fatigue also related to the care of Franci.
We believe that in the course of life we have to adapt to many changes: physical, economic and social, so I would advise a young man who has undergone an early diagnosis so traumatic not to surrender to the new condition of life and not to renounce his Dreams.
We believe that life must be lived however fully and not expect to return as before to be able to live, but to accept the new condition, this does not mean not to try to improve oneself. I remember with sadness a family known during a hospitalization that had stopped living waiting to return as before and that subjected the girl to super intensive rehabilitation cycles both during the school year and in the summer. No vacation but just rehab in the hospital.
We also strongly believe that sport can be an area where new growth stimuli can be found and new ways of reacquiring serenity and the desire to live.
Milan, 28 October 2018