Good Morning Everyone,

I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. You are a savvy, intelligent, experienced group. We need your suggestions. Please post ideas and comments here.

Thank you.

joang

Charlotte,

Check out http://www.zazzle.com/joanspouse/gifts?cg=196385324665603274 for buttons, keychains, t-shirts, etc. that promote Alzheimer's awareness. I honestly did not write that blog with the intention of promoting my Zazzle products, but when you mentioned it, it occured to me that I may have some of what you are looking for.

Everyone,

I just added a link in the blog to a hand-out on Alzheimer's Disease that anyone can copy and print. Please feel free to write up your own and share it with us.

joang

As a breast cancer survivor I am sick of pink everything. If you look at the small lettering the donation given to breast cancer by all the too many co partners you will see there is a cap on how much they will actually donate. Do you really want a pink blender, wine opener--etc? I don't know how many pink yogurt lids I licked to get the number to enter for a donation. Most breast cancer patients are fairly young and still pretty. Most AD victems don't make for a Hallmark picture. Until the general populace is made aware that dementia strikes the young and is always fatal I doubt they will begin to think purple. Sorry-I have no answer.

I have been going to my Walmart in town for years and there has always been people out in front of the store selling something for some kind of organization and I usually ignore them because I can't really afford to buy anything from them anyway even if I did want to support their cause. But this one day...I was on my way into Walmart when I read this sign and the only word that caught my eye was Alzheimer's at the bottom of the sign and I stopped in my tracks, read the rest of the sign and then went up to the table. They were selling a dozen glazed dognuts to raise money for alzheimer's research. Of course I told them about my DH and thanked them for what they were doing and bought the dognuts. The only other thing I can think of in regards to letting them be more knowledgeable is to do something like what Michael Jay Fox does when he talks about his disease in front of different forums.

I believe one of the problems is that the wives of "most" AD patients are involved in their care and their age prvents them from being advocates for us after their journey is over. Nancy Reagan is as frail as can be, and if truth be known, I don't think she could hold up to one appearance a month. She had help getting around years ago. Maria Shriver might be our best bet after their Governor stint is over. She gets attention in Washington just because of her family name, she is "in" with the networks, and is extremely strong in communication skills. She has my vote.

I think that many of us have probably been wondering the same thing ... how can we get a 'critical mass' going to move the conversation along with AD as has been done with heart disease and cancer. I think that until someone famous really leads the charge, it's just not gonna happen ... or perhaps it will take that 'tsunami' of new AD diagnoses as baby boomers age to wake up the medical profession and the public at large that Alzheimer's IS a MAJOR concern and we must deal better with it through all phases ... research, funding, diagnosis, treatment, communication, etc. Sadly,for reasons noted above by others, I don't think we're anywhere near that critical mass yet ... and may not be for many more years.

Yes, they think the medications help and it is hard to get them to understand. Try explaining it doesn't even slow the disease down - it only helps some stay cognitively better for longer but once the medicine stops helping they quickly catch up to where they would have been. Try explaining it only mask the symptoms, not cure them. Sometimes, even to my sister where we park our RV at, I feel it is useless. Even she reads things and ask me if we tried or did it. The latest was she was reading an article that low testosterone can mimic dementia - did we have it checked. Duh - Of course we did. More truth out there would sure help.

First of all we should NOT be using the Alzheimer's word. We need to start using the Dementia word instead. Around half of the people who get dementia do not have Alzhiemer's.

Second, Cancer has survivors. The Komen foundation was very smart. They emphasized their SURVIVORS. They celebrate their survivors. The only people who survive dementia is the caregivers and the various associations don't put enough emphasis on the fact that you can't take it for granted that the caregivers will survive. And most of the Breast Cancer survivors I've seen on the Philadelphia stations do not qualify as young and pretty. They come in all ages.

There have been a lot of celebrity spokespeople starting with Rita Hayworth's daughter a couple of decades ago. She went public on 60 minutes after her mother had died. It just wasn't time then for anything more. And there is no question that Maria Shriver has positioned herself to do a lot of work in that area after January. She has already become a lot more visible all of this year. I expect we will see a lot of her next year.

There has been a lot more stuff on TV during the last couple of years, and a lot more of it actually makes sense. I think that a ball is already rolling. We just need to get on board and push that ball a bit.

Finally the Koman foundation built up what it was doing from a very tiny beginning. In the beginning all they were doing was sending in survivor volunteers to talk to and work with women who had just had the radical surgery that was typical of the time. I'm not sure just how far back they go, but I think they were part of the reason no one goes into surgery not knowing if they are going to take the breast off or not. Back in the late 50s my sister had breast surgery under that system. They only took the lump, but she did not know until she woke up if they were going to take the entire breast.

My point is that there are a lot of complaints that there isn't already a system in place for dementia. But the Koman strategy did not happen overnight. And a Koman type strategy isn't going to happen for dementia unless we bring in the daughters and granddaughters, sisters and brothers of those with the disease. Take a good look at any Koman march. It always includes the daughters, etc. marching for their mothers and grandmothers who did not survive.

It also doesn't help if we, the caregivers, keep leaving off half or more than half of the people who have dementia but not Alzheimer's when we discuss this set of diseases.

We do need to stick with one name. Alzheimer's gets the attention because I believe the word IS geting out that it is a fatal disease. We all know and love our Carol (Carosi) She has lived with a very serious form of Muscular Dystrophy, caled Charcot-Marie-Tooth Disease or CMT. She cannot stand without braces that reach from her shoes to her hips. She cannot walk (and I don't think she has EVER walked) without crutches. If we were asked to give a donation to CMT or Muscular Dystrophy, which would be be more willing to contribute to? The one with a familiar name. MD covers CMT, just ask Carol. so let's rally around ONE name, one cause and then see to it that MCI, Lewy Body Disease, and other similar, degenerative brain diseases are funded within the Alzheimer's Association. That's MY opinion. There is power in number. Don't break our cause into smaller causes, each with their own name.

I wonder why purple was chosen since so many other causes use it? You think it would be too late to change to a more unique color like teal, orange, etc.?

Maybe a part of our efforts could be to consolidate the drive for awareness under " Alzheimers and related Dementias (or Diseases)". The Muscular Dystrophy Assn covers MD and 32 related diseases. Most of the "relationships" are that all the diseases are neuromuscularly destructive. Not all work the same way and they all vary in progression and severity. Some of them are fatal.

From what I've gleaned about Alz and its 'cousins', they all destroy the brain/body/mind bonds and kill the victim in varying lengths of time. Some progress in a slow slide, some in choppy sudden drops. Some progress rapidly. But the common denominators are: 1. Early diagnosis can allow some interventions which can provide a better quality of life for a while, before the progression takes over. 2. Current medications only treat symptoms and do nothing to stop the progression. 3. Not all medications can be used on all the 'cousins'. Some can even be detrimental to the condition being treated.

Beyond all that, It is also Caregiver's Awareness Month, and we all know Caregivers need support. As a fair size membership in that body who knows better than we do how hard to is to find support? Agencies are limited in what they can do and how much they can do, by size and standards. Not all support has to come from organizations and agencies. Grassroots help needs to be tapped and built up. So much could be done with little or no cost to the person helping--mow the caregivers yard when you do your own; make two casseroles for dinner and give one to a caregiver. You're running to the store for milk and bread--do they need something picked up?

So much to do. ......

carosi, Well said!

Hi eveyone, another avenue of exposure would be our churches,synagogues and other places of worship. If we could make presentations based on the facts that Joan has provided we might get a little support going, it obviously would not be "star" quality, but every little bit helps.