|URGENT PLEA FROM ALZHEIMER'S ASSOCIATION CEO|
|Friday, 13 February 2009|
It is possible that there has never been a moment in America with so much potential to either advance or diminish Alzheimer's research and care. Our nation faces unprecedented times and, with that, comes an unprecedented opportunity to seize this moment and insist our leaders make a greater investment in finding ways to effectively treat, cure, and prevent Alzheimer's disease.
It is critical to our mission, to the people we serve, and to society at large to make this Public Policy Forum louder than ever. We need advocates from every state and from every congressional district. We need people with the disease, their caregivers, health care professionals, business leaders, and scientists to raise their voices and educate our policy makers so they know that an investment in Alzheimer's is an investment in the economic health of the nation and the personal health of millions.
Please contact the Alzheimer's Association at
An acquaintance of mine, Lisa Genova, wrote a novel; 'Still Alice' and self-published it a couple of years ago. The story is about a fictional character, Alice, and her experience with early onset Alzheimer's. The book has been popular in the dementia community but now has been picked up by a major publisher; Simon and Schuster. It's available in all major book stores and other major retailers such as Target and CostCo.
This story catches the nuances of early Alzheimer's from the patient's point of view. It's a wonderful human story of love, regret and loss.
I'm addicted to football. Of course that means I'm a Charger fan. I spent the afternoon watching them in a futile effort to beat the Pittsburg Steelers. Never going to happen.
Whoops! San Diego just made another touch down. Maybe I should hold off on making predictions. They are still 11 points behind with 9 minutes to go but, who knows, maybe they can still pull it off.
Oh-Oh. Pittsburg just made another touch down with 4 minutes to play. Ugh! Time to give it up.
There are three stages in AD; cognitive decline, functional decline and behavioral decline. Most people are diagnosed in the second stage because they do not want to anticipate being told they have AD. Worst yet, doctors avoid the word as well. But that is going to change.
Early diagnosis allows the drugs now available to be most effective and gives time for the patient to prepare, socially and economically for what is to come. Dr. Tangalos points out the value of improving the home environment, perhaps downsizing to make the space more manageable or installing inexpensive devices like motion detector lights and big-button phones. Maintaining a routine is essential. If you are going to move or make a major change in your environment, do it in the early stage when the patient can adjust or in the late stage their function is already extremely impaired.
Dr. Tangalos ended the interview with this: "(People are coming in for diagnosis) much too late. That's easy to understand because Alzheimer's is such a devastating disease. But we'd like patients and families to run toward the diagnosis, rather than away from it."
From one who is living that reality, I say Amen!
I finished my annual psychometric exam yesterday. It involves 3, one-hour sessions with a psychologist quizzing me with various test and examinations. In one way or another they involve testing my ability to remember things... a story, pairs of words, figures on paper, etc.
I've taken 4 or 5 of these things over the past 3 years and, though exhausting, I've always felt pretty good about the results. Yesterday something happened that really shook me up. Late in the test period the psychologist showed me a page with three figures on it; a triangle, a rectangle and a circle. She showed it for 10 seconds and then closed the book and waited 10 seconds. Then I was to draw these figures on a piece of paper. As the test proceeded, the images became more complicated; divided in two, or had lines sticking off the side. The last three, I became unable to reproduce them. I could not remember the details and was at lose.
I think this is the first time I've truly experience an Alzheimer's moment. The psychologist tried to reassure me but I came home pretty depressed. I'm better today. I guess it was inevitable that this day would come. I think I've been living under the delusion it never would.