Alzheimer

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The Italian Association of Alzheimer sufferers (AIMA) has written me a long letter to raise the awareness of Italian citizens and the institutions to this illness. There are a good 800,000 people with this illness in Italy. My mother was one of them, She became ill at the age of 49 and died 12 years later after playing the piano. Music was the last thing she remembered.
In 2002 AIMA commissioned Tornatore to make a film. He gave this a setting in Parliament. The film was not broadcast by RAI or by Mediaset. Publitalia responded: “There’s not the space”. Sipra that manages advertising on the RAI, preferred to stay silent. The politicians, with rare exceptions, felt offended by the comparison. The film is on the blog from today.


Dear Beppe,

The date of 21 September (World Alzheimer Day) has recently gone by and I would like to present a few reflections to a public (your readers) that I know to be watchful and sensitive.

When I founded AIMA, 23 years ago, I only knew as much about Alzheimer’s disease as I had learned from what happened to my mother and me in the previous two years. I knew that it was a devastating disease that had destroyed not just the brain and the life of my mother but also my own life completely. I discovered that in Italy very few doctors knew the disease even though there were (at that time) about 300,000 people suffering from it. I discovered that there were no possibilities of a cure or of therapies and above all that the National Health Service was completely ignorant of the existence of the problem and thus of its extent and I discovered, day by day, that the abandonment, the isolation, and the desperation were experienced by all the families of the Alzheimer sufferers.

For AIMA, the ten years that followed have been fundamental to get to know and to understand the illness, how to help a person suffering from it, and how the family members should behave. Our knowledge, our awareness, our using every opportunity to talk about the problem, our knocking on every door constantly and insistently, has meant the Alzheimer problem has become so visible that people may have been led to believe that the cure for a demented person is already something that has been achieved. Instead, in the second half of the 1990s it was discovered with certainty that research would not have brought astounding results and solutions in the short term, and the welfare systems have recognised their own organizational lack of ability and above all their financial constraints.

Other years have passed by (nearly 9) and the “log book” shows other new discoveries: the Cronos project has been done. It was not exactly what we asked for. It had a lot of defects that got bigger as time went by. (The wish to restrict the use of medicines, so as to save money, became more and more evident), but it had the advantage of starting to trace out a network, and to spread practical knowledge throughout the land. Then Cronos was closed down and it gave rise to nota 85 {about the use of pharmaceuticals for Alzheimer’s} (still restrictions for those suffering from Alzheimer’s). The related network - of UVA {Unità di Valutazione Alzheimer = Alzheimer Evaluation Units} has shown its limits and even though it tried to keep to the protocol and to make a decisive leap as regards quality , the total and widespread lack of resources has prevented this from happening.

But there’s something else to be pointed out. In the regions, the health and social planning has shown itself to be resistant to the needs of those suffering from Alzheimer’s and their families and in fact, for purely financial reasons, it is slipping back from a level of awareness that seemed to have been achieved.
There has been no brake on the speculation by private individuals and companies, especially as regards services. [...] The actual Minister of Health is particularly careful and sensitive to the problems of the frail population (you can believe me! I've known many…): but will she have the courage of the strong decisions needed? And will normal citizens (like me and you) be able to give her the courage that politics perhaps doesn't her? Thanks, Beppe. (But, I'm conviced, this is just a start).”

www.alzheimer-aima.it

Read the complete original letter.




PS Sign the appeal for Justice and the Rule of law in Calabria.

Posted by Beppe Grillo at 11:38 AM in | Comments (3)
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Comments

a quando il l'"European V-Day"?????

Posted by: mimhe | October 4, 2007 04:08 PM


mr Grillo we are very happy for v.day;but, to tell the truth, we don't understand why you contry is governed bi comuninists.
The presidente of republic is an old strict stalinist;the president of camera too.
You need an anticomunism day1

Posted by: giuseppe vitale | October 3, 2007 11:08 PM


buuuuuu... basta... la tua notorietà è già in discesa!

Posted by: mimhe | October 3, 2007 12:59 PM


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