The Alzheimer's Association is asking everyone to sign a petition, to be delivered to whoever becomes the next President of the U.S., to make Alzheimer's care and research a top priority. To sign the petition, go to:
I signed. I would have preferred all dementias, but frankly Alzhemer's has become a keyword for all dementias, and half the time the drugs work on more than one kind already. So I signed.
Signing the petition is fine, but I can tell you from experience and from talking to legislators myself, that NO ONE, from the president on down, is going to listen if they don't FEEL the true stories. I've said this on other threads, but it bears repeating here - TELL YOUR STORIES to your local TV and print reporters, to your local, State, and Federal legislators. Tell it often and tell it loud.
Joan, this is just one of many different ways to try to get ATTENTION. Numbers talk. If they can get many, many thousands of people to sign, it will make an impression. For at least a little while. Meanwhile, of course, we have to find many other ways to spread the word.
If they can't get very many people to sign, what will that say? To all of us?
Its even scarier that there is no definitive test to determine if a person has Alzheimer's or not.
I want to attack the disease in different ways - one is a test to determine if a person has it, two is medication/techniques to stop, slow or cure it, three is edication to better deal with the various stages and four is a better educated public that has a clearer understanding of the disease and what it means.
Right now that is a goal, dream........ maybe someday.
I agree with Joan in that we need to talk to others more. I am not likely to talk to a radio person, TV or otherwise, however I can talk to other people about some of my experiences and help to battle the ignorance over the disease. Each person you talk with is an opportunity to educate.
In addition to signing the petition I got eight local businesses to contribute and cover the cost to run a full page color copy of the current Alzheimer's Associations PR/Education ad in the Orlando Sentinel. We have to keep Alzheimer's Disease in the public eye and hope it gets the attention and consideration from those in power to work for a cure.
I did my education bit while getting lunch here at work today. I am wearing a crazy quilt vest with silk ribbon embroidery on it that I made pre-Alzheimer's when I had time to do some of those types of things. I got a compliment and after saying thank you made the comment that I hope to do more some day after Alzheimer's. The person was a bit shocked but I could see the wheels working and thinking about what it takes to take care of a person person with Alzheimer's whether they are at home or in a facility.
When you consider how difficult it can be to get someone to a dr., and/or diagnosed, and/or limiting activiites as necessary, we not only have to wonder about the next president, but all the people out there in various jobs, whether they be teaching, medicine, business, etc.
Tony, how are you and the family doing? Glad you can continue to get the word out there.
There are actually a lot of t-shirts available with all sorts of sayings if anyone is interested in a bolder approach to education.
There are also lot of shirts that are appropriate for both a LO and a spouse, kid, etc., to say nothing of the one's the Alzheimer's assoc. sells that are "move", etc.
I would prefer our own shirts - with a little class..<grin>...Wouldn't it be another good thing if Joan (in her spare time, of course!) got a T-shirt designed for us ( with a logo and "Alzheimer's Caregiver Spouses - our loved ones need your help!") in a bright color (all sizes) that we could order and one day each month that we would wear our T shirts and have our spouses wear something like "I'm with her (or him)" (someone else can think of a cute name) and we could also ask everyone we know (groups, corporations, etc.) to buy them for EVERYONE WHO HAS/HAD A RELATIVE, FRIEND, OR NEIGHBOR with AD and to wear their shirts on that day as well. We might end up with almost half of America wearing these bright colored T shirts especially if we tell them it is to create additional awareness to the disease and the caregivers. It won't be quite like the Susan G. Koman Race for the Cure, but look where that has gotten! And we need to get SOMETHING started for this.
Also, we all need to write our individual congressmen/women as well. Often.
A friend bought a sweatshirt for me a few years ago and it had "Retired Air Force wife...the toughest job in the Air Force. Maybe we could paraphrase to something like, "Care Giver for an Alzheimer's Patient...The toughest job EVER!"