Written by Cory Twibell Friday, 01 April 2011 00:00
The Coalitition of New York State Alzheimer’s Association Chapters, Inc. and president Mary Ann Malack-Ragona, CEO for the Long Island Chapter, explained, “There is no one more worthy of this award than Henley.”
Henley recalled her initial concerns when she and her family were given the news 10 years ago.
“Complete fear was my first reaction. Mike’s mom had already been diagnosed and passed away from the disease, so I knew what a diagnosis of Alzheimer’s meant. I had been witness to Mike and his family’s seven-year struggle with his mom.
“I had some concern before he was officially diagnosed and had mentioned it to friends and family. They all assured me that ‘everyone forgets things’ and ‘not to worry.’ My biggest fear had come true that day in April, 2001,” said Henley.
As far as lifestyle changes after the diagnosis, Henley said, “I was frightened that we would lose our home” as they would be raising two children on just her salary.
“Right away I tried to be more conservative. The biggest impact though was how it affected our children’s lives. In the beginning of the illness, it was difficult to leave Mike by himself. If he was in bed for the night, or had a particularly agitated day, I could not leave him, and quite often my children’s friends would invite them out at the last minute, and I could never take them. People would say they understood, but many times my children were unable to do things because I could not get out to take them.
“We had a few friends and neighbors who were wonderful and did help us out, but for the most part, we were on our own. Courtney and Brandon missed out on many activities and outings with their friends because they had no way of getting to and from. Good friends and even some family stopped calling and coming by – this is a very isolating disease,” said Henley.
She said one particular aspect, which “hurt a lot,” was how people couldn’t put their own insecurities aside for the sake of an ill friend.
Determined to move forward, Henley became a spokesperson for those who have a diagnosis of Young Onset Alzheimer’s disease, appearing on local TV, sharing her story with Newsday and speaking at the Chapters Annual Education Conference. Her family also raises money every year for the Chapters Annual Walk To End Alzheimer’s helping to support the full Mission of the Association Research, Care and Cure.
“Each and every year we have surpassed our previous year’s total and this year we are aiming even higher. If you can’t make the sale, you can go online to the Alzheimer’s Association website and look up ‘Henley’s Heroes” and donate under our team name,” Henley explained.
According to the Alzheimer’s Association, the nation’s largest private funder and leading voluntary health organization, 5.3 million people in this country have Alzheimer’s disease and more than 200,000 individuals under the age of 65 have a diagnosis of AD. By the middle of this century, it is estimated that approximately 14-16 million people will have a diagnosis of Alzheimer’s disease; one out of eight baby boomers is at risk. Alzheimer’s disease does not happen overnight; it begins to attack the brain of its potential victims 10 to 20 years before the first symptoms appear.
“To protect today’s baby boomers from the ravages of Alzheimer’s disease, we have to find ways to stop this disease process now, while there is still time to prevent the damage,” as explained in an association press release.
Aside from her local work, Henley is being recognized for her public policy efforts in the nation’s capital. Her advocacy helped pass the National Project Act (NAPA), a legislative initiative that will create a coordinated national plan to overcome the Alzheimer crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer’s research, clinical care, institutional and home and community-based programs and their outcomes. President Barack Obama signed NAPA into law on Jan. 4, 2010.
“My children and I were very proud. When we were in Washington, we felt empowered by the many representatives we met who said they would support the bill. It wasn’t until it was officially signed that I believed it,” said Henley, who emphasized the need for research funding, as the disease currently has no cure.
“Alzheimer’s disease is one of the top 10 leading causes of death, yet it is the only one that’s on the rise. Why? There’s not enough money in research. There are no survivors of Alzheimer’s disease to go out and tell their story. There is no cure, no chance of remission … no hope,” she said, noting that Alzheimer’s doesn’t just affect older people and it can affect anyone on Long Island regardless of family history.
For more information about the Alzheimer’s Association, contact Mary Ann Malack-Ragona, Executive Director/CEO at 631-820-8068 or www.alz.org/longisland.