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The princess wanted to be a singer when she had to leave everything to deal with Rita Hayworth, affected by Alzheimer's disease
Interview Caroline Pigozzi - Paris Match
Da carefree youth in the hell of dementia of his mother to Yasmin Aga Khan, the shock was brutal. In 1981, the princess discovers that Rita Hayworth, 62, suffers from Alzheimer's disease. That it was called the goddess of love, and marriage to the famous seducer Prince Ali Khan was raised to the rank of princess of the Thousand and One Nights, is lost in an endless twilight. By choosing to accompany him in this trial, Yasmin broke into a universe that she knows nothing: it transforms its combat, its agonies, a universal cause and created the Alzheimer's Association Rita Hayworth Gala. Twenty-five years later, Yasmin Aga Khan is proud of the millions of dollars it could save each year for researchers. In France, the disease affects one million people. She received the title of great national cause.
Paris Match. Princess, you were the first person to alert world public opinion about Alzheimer's disease ...
Princess Yasmin Aga Khan.Indeed, it was in 1981, there are already far more than a quarter of a century since, before kissing on a voluntary and absolute this cause, I was faced with the painful loss of my mother, Rita Hayworth , which was diagnosed at age 62, Alzheimer's disease. It had, for months, no unusual behavior that doctors and relatives not understand why. She, once with an incredible memory, actress so bright and talented, can not retain his texts. Mom also lost the sense of direction, confuses things and had, moreover, hallucinations, to see intruders in his house, causing the police to prevent. It really became increasingly strange, and I put it on the back of the drink because she appreciated the spirit and great wines!
Anyway!
Remember those terrible pictures that have sadly gone around the world, when in 1981, at the airport in London, she descended, unbridled, the bridge of an aircraft. Realizing that day that it should be really serious, I then headed to New York at Columbia Presbyterian Medical Center where, after simple tests of memory - he called the name of U.S. President, day and date the week, where she lived - and a brain scanner, neurologists have the diagnosis of Alzheimer's disease. I have never heard this word complicated inherited the name of the German doctor who first was in 1906 in Munich, described the disease in a woman autopsia 52 years singular behavior, which he had discovered plaques and degeneration of neurons in the brain. Thus, I decided to stop everything to take care of my mother. Became his legal guardian, I have completely taken over, which meant first for me to stop singing - because I was about to make a career as a singer, after studies in music at the University of Bennington and began to dial. But how could I have the heart to that and get into a profession with too intrusive mother so ill! It was at that moment that I decided to turn this painful disability in positive action. Taking advantage of the fame and glory from that actress adulated and most admired of his time, combining his name with the disease, I then put tirelessly to alert world public opinion on the disease 'AD.
How?
First, by joining this year was a modest association founded by a businessman, Jerome Stone, in 1979. We were hardly more than twenty, all very motivated because everyone had a relative suffering from Alzheimer's. One of my greatest strengths at the time was to know President Reagan who once knew Rita Hayworth Hollywood ... As soon as I appeared before him, he invited members of the association and the board in his office Oval the White House, and it faithfully every year until the end of his second term. Thanks to this, I was able, with our team, the alert on the ravages of disease, and explain how lobbying, particularly at the federal level, was essential for us. It helped us enormously in declaring November Month of preventing the disease. Decision officially proclaimed in November 1983 by the Congress, approved and signed by President Ronald Reagan in person. What upsets me now is that it was also a victim of this disease.
What is the balance of all those years of perseverance?
We now have 75 member states of the Association Alzheimer's Disease International, which I am the president. France was the second country to join us after Australia. Alzheimer's Australia was established in 1985. I am very admiring of their shares and funds paid very important because in many countries, tax deductions are much less important than in the United States. We also obtained that September 21 is World Day of Alzheimer's disease.
Tell me now.
I live in the mountains of Utah, because I need peace and quiet, wide open spaces ... and every day I realize how lucky I live in Park City. I agree, the past ten years, my life with Blaize, a wonderful man. We have a great complicity, and while working in the
finance, he supports me every day by marrying my doubts, my joys in this and other areas ... it also gives me ideas. As for my 23-year-old son, Andrew, born of my first marriage to Basil Embiricos - I was married twice - he lives in New York and I see when I go a week per month for meetings of the association. He is very proud of my commitment, who, from very small, has always been affected by my actions ... my responsibilities if I can not be kept behind a desk, I am of course constantly reachable through my BlackBerry . Because the ravages of this disease within me at every moment, even in my remote mountains where I feel that time passes more slowly than in New York, for example ... In fact, to truly benefit from the existence, I rise from 7 am, then I can ski, play golf ... but I am also very happy in New York lights in my apartment on Central Park.
Are you proud of everything you've done for twenty-five years?
Things do not so, I am pleased that over the years more and more countries have mobilized and are really aware of what this degenerative disease - the first signs may occur from 30 years . For my part, I just think that when you are a princess, who has always had the means to live a very privileged, we must give back to society in one form or another it has made. My everyday life seems empty and sad if I spent my nights in the evenings and my days knitting! Because I feel as driven by a mission, a little voice inside my side to find by all means the cause of this terrible evil to succeed in relieving those who suffer, and their entourage.
Tell me about your mother ...
Mum led a life of fabulous, exciting and painful at times. As an actress and personally, it is almost arrived in the firmament. She had, with my father, Ali Khan - the women considered as one of the most attractive of its time - a marriage of fairy tale ... and even then they divorced, they remained close . Dad was warm, elegant, very loving, a wonderful. Before my father, she was already married to Orson Welles, she had a daughter, Rebecca, my half-sister died in 2004. I had my share of friendly relations with Orson Welles. Mom, who has been very lucky until his illness, was a great lady, having experienced the best and worst.
Look at his films you?
Of course, with happiness! Channel Turner, a movie channel, recently devoted an entire month to Rita Hayworth. Every Tuesday evening, I saw what emotion, what joy for me, but also for movie buffs that can still be admired, who loved his job and was taking his roles very seriously. I am fortunate that there is still this kind of testimony to keep the mother of my best memory is also important to Andrew that has very little known his grandmother because when he was born, she was already very ill and bedridden. So I brought her grand-son to take the few moments in his arms, but unfortunately Andrew did not remember more!
Do you fear being a victim of the disease?
I am not obsessed or reassured, and I admit that I sometimes think, because I believe in genetics and thus heredity. My mother was the first victim in our family, who knows what might happen! If the disease can be family, fortunately, it rarely affects each member of a family.
Now talk about this plan is France ...
I find your country and your president, Nicolas Sarkozy, formidable as he had the courage to declare, in 2007, the disease as "great national cause", with a control plan and a research center on the specific forms early. There are in France approximately 10 000 people affected before age 60, and the Head of State has officially announced it would release 1.6 billion five-year plan for Alzheimer's. Research, improving the quality of life, shelter, information, support patients and families still require more money! I hope that through exemplary actions as we will make a real leap forward, either in Europe, the United States or elsewhere ...
Where you have your amazing strength?
First of the love of my family, even if, unfortunately, I can see two or three times a year, of the affection of my faithful friends and also I think my temperament positive and voluntary. I am viscerally taken by my action and I want more than anything before he died - I have 59 years - we have found how to stop Alzheimer's disease. Finally, I thank heaven every morning me first given health allows me to enjoy every moment of life because life is short and therefore try not to waste too much time!
LOSS AND HOPE AT THE STELLAR ALZHEIMER’S ASSOCIATION RITA HAYWORTH GALA
Honorees, award presenters and guests at the October 27 “So Near & Yet So Far” Alzheimer’s Association Rita Hayworth Gala had a vested reason for the urgency to find a cure for a disease that currently afflicts 5.3 million Americans. When she was 19, Princess Yasmin Aga Khan discovered that her mother, Rita Hayworth, then in her 50s, was suffering from Alzheimer’s. After caring for her mother until her death in 1987 at age 68, she founded the Rita Hayworth Gala. Alexandra Lebenthal, gala chair, wistfully recalled her once “glamorous, vital mommy,” now 79, who no longer recognizes her or her sister.
Rita Hayworth Award recipient Muffie Potter Aston told the audience about her grandmother, “a widow at 28 with a young daughter — my mother — in German-occupied Yugoslavia. “She was interrogated by the Nazis… and later honored by the OSS [Office of Strategic Services] as a vital code-breaker for the British. She went from speaking seven languages to barely speaking one.” Attorney Lonnie Wollin, recipient of the Rita Hayworth Lifetime Award, lost his father, three uncles and two aunts to Alzheimer’s. In 1977, Wollin founded the Alzheimer’s Disease Society, which eventually evolved into the National Alzheimer’s Association. Among the guests was a stunning Brooke Shields, whose dementia-afflicted mother once orchestrated young Shields’s rise to fame.
The gowns were dazzling, and the statistics mind-boggling: “By 2015, there will be 16 million with Alzheimer’s in the U.S.,” Aga Khan informed. “Somewhere in America, every 70 seconds, doctors diagnose a new case…. Alzheimer’s annually afflicts more [people] than breast cancer and prostate combined. It is the seventh leading cause of death, and affects people in their 30s, 40s and 50s.” And as a kicker for the women in the Waldorf-Astoria ballroom, she added, “Twenty percent of women reaching 65 will develop dementia.” On a large movie screen set up onstage, a film retrospective of Alzheimer’s victims included headshots of George Balanchine, Estelle Getty, Abe Ribicoff, William Powell, Perry Como, Cyrus Vance, Eddie Albert, Vincente Minnelli, Aaron Copeland, Barry Goldwater, Charles Bronson, Otto Preminger, Arlene Francis, Dana Andrews, Floyd Patterson, Burgess Meredith, Ralph Waldo Emerson, Sugar Ray Robinson, Rosa Parks, Charleton Heston, Ronald Reagan and others.
“Alzheimer’s took both my grandfather and my father,” said David Hyde Pierce, who whimsically informed, “Yes, I used to be Niles” — a reference to the character he portrayed in the long-running TV sitcom “Frasier,” currently in reruns. “There are two dozen drugs in clinical tests at this time,” Pierce said. A star of such recent Broadway hits as “Spamalot,” and “Curtains,” Pierce, who also had a supporting role in the 1988 film “Crossing Delancey” (back then, he was known as David Pierce), admitted that being “unemployed” was the reason he was able to attend the gala.
Underwritten by Rolex Watch USA, the event raised $5 million. Roger Waters, founding member, lyricist and principal composer of Pink Floyd, performed “Wish You Were Here.” The Pointer Sisters topped off the evening’s entertainment.
ROTARY INTERNATIONAL District 7910 Central Massachusetts USA
Rotary Club of Westborough
PO Box 840 Westborough, Massachusetts, 01581 USA Home
Alzheimer's The Documentary "I Remember Better When I Paint"Special screen showing (click here for print version)
featured are noted doctors from Boston University and Yasmin Aga Khan, president of Alzheimer’s Disease International and daughter of Rita Hayworth, who had Alzheimer’s, and former Westborough resident Skip Curtis.
Tuesday, April 13, 2010 at the Westborough High School Auditorium
The Rotary Club of Westborough and Westborough Council on Aging cordially invite you to a screening of the documentary film "I Remember Better When I Paint." This film by Eric Ellena and Berna Huebner, presented by French Connection Films and the Hilgos Foundation, and narrated by Olivia de Havilland is the first international documentary about the positive impact of art and other creative therapies on people with Alzheimer's and how these approaches can change the way we look at the disease. Among those who are featured are noted doctors from Boston University and Yasmin Aga Khan, president of Alzheimer’s Disease International and daughter of Rita Hayworth, who had Alzheimer’s, and former Westborough resident Skip Curtis.
"I Remember Better When I Paint" shows the revolutionary effects of treatment for Alzheimer's patients and brings important information to Alzheimer's patients and those who love and care for them, and to those who, through heredity, will become future victims of this disease. The Westborough screening “welcomes home” the Skip and Meg Curtis family who, in 1996, moved to New Hampshire to run a Bed and Breakfast Inn. Skip Curtis was diagnosed with Alzheimer’s disease and is a patient at the Boston University School of Medicine’s Disease Clinical & Research Program. Following the screening, there will be a panel discussion with:
Meg Curtis, Innkeeper, caregiver to Alzheimer’s patient Skip Curtis featured in the film, along with her children, and, Robert Stern, PhD, Boston University School of Medicine, Associate Professor of Neurology and Co-Director, Alzheimer's Disease Clinical & Research Program
When: Tuesday, April 13, 2010
6:30 p.m. – At the door ticket sales
7:00 p.m. – Movie screening
8:00 p.m. – Panel discussion and light refreshments
Where: Westborough High School Auditorium, 90 West Main Street, Westborough, MA 01581. Parking will be available in the school lots.
Cost: $10 per person, cash or check
Tickets are available at the Westborough Senior Center, 4 Rogers Road and at Central One Credit Union, South Street, Westborough, MA 01581.
Call Westborough Council on Aging at 508-366-3000 for further information or Carol Burtt Borglund, Rotary Club of Westborough, 508-922-6358.
This event is co-sponsored by the Community Service Committee of the Rotary Club of Westborough and Westborough Council on Aging. Proceeds will be split between local charities and the Skip Curtis Fund at Boston University Alzheimer’s Disease Center, Boston University, MA.
> Reagan and Alzheimer's -- What the Public Doesn't Know About the
> 40th President
> By Paul Kengor
> Published January 18, 2011
> | FoxNews.com
> This February 6, 2011 marks the centennial of Ronald Reagan’s birth.
> Reagan died June 5, 2004 at the ripe old age of 93. Ironically,
> throughout that long life, he had been a model of fitness. If not
> for Alzheimer’s disease, it is quite possible we might be watching
> news clips of an elderly Reagan blowing out a bunch of candles on a
> huge birthday cake.
> That Reagan lost his life to the scourge of Alzheimer’s is, of
> course, well-known. The issue has re-emerged with the comments by
> his son, Ron, speculating that Reagan might have begun experiencing
> the disease earlier than disclosed, during his presidency even. That
> speculation is not new, and has been vigorously debated before,
> including by experts on the disease and Reagan’s physicians. I’m not
> going to rehash the debate here.
> What I would like to do, however, is use this as an opportunity to
> report something on Reagan and Alzheimer’s that has been missed over
> the years. Indeed, less known were Reagan’s quite significant, and
> rather moving, private actions, during his presidency, on behalf of
> those suffering the disease. As a Reagan biographer who spent
> several summers researching presidential papers at the Reagan
> Library, I swerved into these actions unexpectedly.
> Remarkably, Reagan had been highly active in confronting Alzheimer’s
> from the start of his presidency. He would make eight separate
> statements on the disease, averaging one for each year in the White
House
> . In these, he called Alzheimer’s “devastating,” an “indiscriminate
> killer of mind and life.”
> His final presidential statement came November 5, 1988. It is
> chilling to read now, as it foretells Reagan’s own condition in his
> final years, and given that it came precisely six years to the day
> (November 5, 1994) when Reagan would announce to the world that he
> himself had the disease:
>
> “Alzheimer’s disease ranks among the most severe of afflictions,
> because it strips people of their memory and judgment and robs them
> of the essence of their personalities,” explained Reagan. “As the
> brain progressively deteriorates, tasks familiar for a lifetime,
> such as tying a shoelace or making a bed, become bewildering.
> Spouses and children become strangers. Slowly, victims of the
> disease enter profound dementia.”
> That was Reagan himself in the end—robbed of his essence. It was an
> eerie harbinger of what was to come.
> While those presidential statements fell through the cracks of
> history, less-known still, but quite poignant, was Reagan’s behind-
> the-scenes correspondence with Princess Yasmin Aga Khan, daughter
ofbeautiful
> Hollywood star, Rita Hayworth. Hayworth was suffering a premature
> decline due to, of all things, Alzheimer’s disease.
> Reagan was concerned about Hayworth, whom he had known since his
> days as head of the Screen Actors Guild in the 1940s. Tucked away in
> the Presidential Handwriting File at the Reagan Library are touching
> letters exchanged between Reagan and Yasmin Aga Khan.
> The first was dated November 15, 1982, in which Khan thanked Reagan
> for signing a proclamation creating National Alzheimer’s Awareness
> Week. She detailed her mother’s condition and how it had early on
> damaged the actress’s emotional well-being, leading to bouts with
> alcohol, which made her “very difficult” as a mother.
> Reagan responded immediately. His two-page letter on White House
> stationary was dated November 19—an impressive turnaround given
> major demands in the world at the time. The 40th president
> referenced his own parents, including his father’s “very great
> drinking problem” and how his mother, “bless her soul, continually
> told my brother and me that this was a sickness and that he could
> not help it, so we must not hate him but understand and love him.”
> Reagan said he was grateful that “today we have real knowledge of
> Alzheimer’s disease,” and hoped for a cure. He thanked Khan for her
> efforts: “God bless you for what you are doing. You will be in my
prayers.”
> On May 14, 1987, Rita Hayworth died. The president telephoned Khan
> to offer condolences, and released a public statement expressing
> regret. Two months later, on July 28, Khan wrote to ask Reagan if he
> would be an honorary patron for the 1988 Rita Hayworth Gala, which
> had the goal of raising $1.5 million for Alzheimer’s research. Not
> even a week later, Reagan responded, saying he would be “very
> pleased and honored…. Thanks for asking.”
> Rita Hayworth’s case is just one example of President Reagan’s
> concern, public and private, for this disease and its victims.
> Little did he know it would one day claim him, too.
> The centennial of Reagan’s birth brings all sorts of remembrances,
> from celebrations by conservative groups to symposia by academic
> centers and universities. These gatherings will discuss numerous
> aspects of Reagan’s life and career, from the Cold War to tax cuts
> to Hollywood. And with Ron Reagan’s recent comments, the role of
> Alzheimer’s will be front and center. Alas, for Ronald Reagan, there
> was much more to that story.
> Paul Kengor is professor of political science at Grove City College
> in Grove City, Pennsylvania. His books include "The Crusader: Ronald
> Reagan and the Fall of Communism" and the newly released "Dupes: How
> America’s Adversaries Have Manipulated Progressives for a Century."
>
> Read more:
http://www.foxnews.com/opinion/2011/01/18/reagan-alzheimers-public-doesnt-know-th-president/#ixzz1BVrFf1Bd
By Princess Yasmin Aga Khan, president of Alzheimer’s Disease International, honorary vice chairman of the national board of the Alzheimer’s Association and general chair of the Alzheimer’s Association Rita Hayworth Galas
My mother, Rita Hayworth, was the most beautiful and glamorous movie star of the 1940s and 1950s. She spent much of her life memorizing complicated dance routines and movie scripts. How ironic that she would later be diagnosed with Alzheimer’s disease.
As a young girl on visits home from boarding school, I would notice her odd behavior. She would move her personal items from her bedroom to other closets around the house, including mine. She would throw all the food out of the cupboards. She would imagine voices outside and thought someone was trying to break into her home. The police would have to come and tell her no one was there. I remember the many times she would call me at college and ask me the same questions over and over again.
As the disease progressed, her confusion, disorientation and fear worsened. She was unable to remember what day it was or even the name of our president. Her panic increased, and my own fear and sense of helplessness and guilt became overwhelming. It was a terrible day when we stood together in front of a mirror, and she turned to me and asked, “Who are you?”
It wasn’t until she had a complete breakdown that I could step in and take charge of my dear mother’s life. I became her caregiver, and I worried about her all the time.
My thought back then was, “What on earth is going on? What’s happening to her?” Today, she would be diagnosed with younger-onset Alzheimer’s disease, since she was only in her 50s. But this was the 1970s. We didn’t know then what we know now. Very few people had heard of Alzheimer’s disease, and it was often misdiagnosed. Patients would be over-medicated and some even sent to mental institutions.
The best anyone could come up with was that she was suffering from alcoholic dementia. She did like to drink, but it wasn’t that much, and I now believe that alcohol helped her cope with the knowledge that she was losing her memory and, ultimately, her career as well.
At last, in 1981, thanks to Dr. Ronald Fieve—with the help of a CAT scan and memory test—we got the right diagnosis. I felt such a great sense of relief knowing exactly what was wrong. Alzheimer’s can be an embarrassing and humiliating disease not just to people who have it but to friends and family as well, and early diagnosis by a neurologist is key to coping.
With the word of my mother’s illness getting out, I was approached by the Alzheimer’s Association, which had recently been started by Chicago businessman Jerome Stone, whose wife had the disease. This organization was my savior. At that time, the Alzheimer’s Association was a small mom-and-pop group made up of husbands, wives, sons and daughters who had family members with the disease. All these wonderful people were my support group. We were there for each other. We shared our daily knowledge and experience of how to best care for our loved ones.
We sprung into action. We went to Washington to push for federal funding for Alzheimer research, because there was very little money spent on the disease at the time. We raised dollars to award to young researchers doing work in the field. We developed Alzheimer’s Association chapters around the country to support caregivers and make sure they knew that they were not alone. We participated in the development of Alzheimer’s Disease International (ADI), of which there are presently 72 member countries.
We continue our efforts today, pressing for heightened public awareness, increased government engagement, more research dollars, programs providing respite for caregivers and financial relief for those who cannot afford home care attendants and costly nursing homes.
My mother passed away in 1987. We have come a very long way since then. But there is so much more work still to be done.
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