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My name is , I was born near the town of Verona ( in Italy)
on the 21st of December 1961. I have got muscular dystrophy of Duchenne.
I have a brother who is five years younger than me, he’s also got the same illness. Since December 1984 I live through the help of a mechanical respirator for ca. 18-19 hours a day. I wrote this page to talk about the breathing assistance on muscular dystrophy of Duchenne. |
Whoever wants to have more informations on the subject or to exchange opinions on this, can get in touch with me.
Let me say it in advance, that I don’t have the competence to talk on the subject from a medical point of view, so I’ll only base it on my personal experience.
Usually nobody says, I belive in good faith, truly everything about muscular dystrophy, expecially to the dystrophic, but not even to his parents.
"I didn’t know much about my illness, I didn’t even know that the doctors thought, back in 1984, that a breathing crisis would have put an end to my existance, I totally ignored it"
This subject had always been
accurately avoided by the doctors and, now I can say, if I had known it
I would have spent my life in a very different way.
At the beginning of summer 1984 I started to show the first symptoms
(anxiety, strange unreal dreams,..) this was showing that my phisical conditions
were, day by day, worsening. From than on I entered a period of dullness,
nothing bothered me anymore, I was only waiting for the worse.
Actually, in October, through a bronchitis, it arrived, what I thought to be the final crisis. That morning, the 4th of November, after ten sleepless days and nights, while I was on the ambulance with the thought of being at the end, I lost consciousness.
If I had died than, I can say, that it wouldn’t have been all that bad.
I will for ever remember the moment I woke: the disappointment and the
panic are indescribable.
I was laying in a bed, in a reanimation room, no chanches to talk,
with a tube down the windpipe, knowing that it was not me anymore to lead
my life. I thought it would have been better for me to have died, yes I
thought it very much.
Days were far too slow and lungs infections were multiplying. In the meantime my parents, doctors Ferrari Adriano and Chilloni Giovanni were in conflict with the rest of the medical equipe of the reanimation station of the Policlinic of Borgo Roma - Verona - They had very different opinions with regard to if, how and when to operate me, applying a solution that until than had been used in Reggio Emilia, in Europe and in the States with great success: the tracheotomy associa-ted to the use of a mechanical respirator during the night hours (so to allow a good oxigenation and a good rest of the breathing muscles), this in order to reach a freedom of 6/8 hours during the day from the respirator.
During that period I often thought that I’d have never gone out of there alive.What kind of, and how much suf-ference would I have had to go through ?
What really impressed me and in a way changed me was that, at a certain
point, I realized to be alone and I knew I would have only made it if I
had fighted with all my strenght. From than on I began to fight against
the Fato considered invincible.
A hard fight which makes you become so selfish that you reach cynism;
so than when your neighbour dies, it doesn’t touch you any more, not so
much, you simply think that luckily it has not happened to you.
While days were passing by the pain in my trachea was becoming unbearable so that I had to ask for two Flectadol a day. Than one day they decided to accept the demand for the operation, also under the pressure from the managers of the UILDM of Verona, so I was operated on the 22nd of December. I went through the post-operation pha-se quite well but, due to the strong virus in the medical station where I was kept, I caught a strong infection which required cortisone and three thoracentesis (just to taste it).
I soon tried to recover, to start again to talk (which is not as easy with the respirator) and to eat normally, after a while I menaged to do it all, so we had to face a new problem as to how and when to send me home; so my mother with great courage learnt how to use the broncho-aspirator with the help of a distance-check from doctors and nurses. But we still had to work out how tom organize the equipe who would have taken care of me once I’d have been discharged; Doctor Vittorio Fraccaroli, the head physician of the Anaesthesia and Reanimation Station of the Villafranca Hospital, assumed with courage and seriousness this responsability.
The respirator was bought at our expences in Bologna and was than repayed to us from the ULSS 33 which than decided to supply us with all the medical services and the radiological assistance. Only than was I discharged, surrounded by everybody’s distrust.
"That day, the 7th of April 1985, was for me as the end of a nightmare; lying in the ambulance while Doctor Fraccaroli and the male nurse Nuvolari where with me, I saw the Policlinic of Borgo Roma in the distance, finally and to my great relief."
When I arrived at home it was like coming again to life, seeing my brother (after more than 4 months) I noticed a bit of fear on his face but I reassured him.
We had to start to work soon as I was unable to breath on my own: I had been lying in bed for more than 4 months with an oxigen percentuage of 60%. Doctors Fraccaroli and Chilloni decided to split the program in three phases:
Doctor Ferrari, together with Mr Bassi (from the Orthopaedic Center in Emilia) built a corset that did not stop all breasts movement and that I hoped to be able to wear without too many troubles. Progresses were very slow but the wish to win my own situation was stronger day by day.
After this troubled period I started to feel that my phy-sical situation was improuving, so I first had a wish to go out, to go back to life again, I could no longer hold my nerves any more, I only wanted to go out. Summer was approaching and things were always better, I began to stand up, first for an hour, than slowly on until six hours; the hardest thing to stand was the really oppressive heat in my room (36 °C) .
So we had gone through the most difficult phase, but now we started the everyday’s fight, to pick back up old habbits, even if I knew my life would have never been the same as before: I wanted to see how far I could go.
Finally I managed to go out from home: with a van and with the help of some friends I went out few times (ten months had gone by). From than on I realized that my physical situation still allowed me to do the things I used to do before.
I soon had to face fear, one saturday evening toghether with some friends we went out for a walk in the town of Verona, we suddently got stuck in a traffic jam and a feeling of anguish, followed by a dreadful anxiety overwhelmed me; the memory of those moments still makes it impossible for me to go outside.
My physical condition since than has not changed much but some things
have happened to make more compli-cated my family’s situation.
the assistance to patients in these conditions can only be done by specialized nursing staff.
The bed-in period in a specialised hospital as for example in a reanimation station or in an intensive therapy station costet daily 1100 us$, so with an aproximate calculation I would cost the national health service 400.000 us$ a year obviously doubled as my brother is also ill. Through helping the home assistance program, the families already under the great stress of illness itself can be helped to reach their own balance facing the situation in a less drammatic and more human way, moreover there would be more beds left free for emergencies.
Since the middle of October 1996 a new assistance service has been started to cover 72 hours a week in-cluding week-ends......
This in few words, has been my experience in facing my illness in its more critical phase, considering that it was thought to be the terminal phase. Since 1984 enormous progresses have been done with a consequent increase of the medium life time of a Duchenne dystrophic, this also through the help of the night breathing preventive assistance."
Since the 4.05.97 I’m in charge of the activities of the
for the Veneto section.
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