Marty posted this under "At last - big step forward in diagnostics! ":

Happy Easter to all and the MarilyninMD I fear a cure for AD being round the corner ranks right up there with the cancer cure.. tiny baby steps all too late of us

To All: My wife's mother had Alzheimer's and suffered with it throughout most of the 80's She died not of A,D but of pneumonia. We elected to withhold antibiotics and let the Good Lord put an end to her torture. A life of being bound to a chair, incontinent, unable to speak, other than animal like cries of pain or move doesn't not rank too high by any Quality of Life standard. My wife was diagnosed with AD in 2008, symptoms had been present long before (The old line, Denial is not just a river can be applied here). My wife has been treated by highly regarded Neuro's at Mt Sinai and Columbia Pry. in NYC and here in FL.At least one other on this forum used the same research Neuro as we do here in FL.
The diagnosis was so apparent in 08, she was immediately accepted in three new Alzheimer's drug trials. We are now in 2012 I no longer chase rainbows, I have adjusted to a bottom line that she has an incurable disease. My efforts are focused on maintaining as normal an existence as possible. I joked calling myself Mr. Tim as I plucked her chinn, washed and blew dry her hair, applied her makeup and dressed her for an elegant Passover Seder at a restaurant with friends the other night. Seated across from her, I had to have a neighbor cut her food, etc. but all know us and do far more than just tolerate the situation they're anzious to help in anyway possible.

We have two daughters in their 40's. They are mother's our four grandchildren, two boys and two girls. Our daughters have been offered genetic testing on numerous occasions by different research teams, all with the caveat; if you do have Alzheimer's, gene indications there is nothing we can do help you. All that they can say say live a health life. Neither daughter elected to undergo genetic testing. (This statement has come from several program directors one within the NIH, another In TX and at major Chicago and NYC research. One daughter developed a totally irrational terror of Alzheimer's when she was told that she was 15 -20 lbs overweight and losing the weight may cut down on her risk, she was not "morbidly" over weight. She hadn't lost her "baby fat" from a delivery 6 mos prior.
She did not qualify for the surgery by any standard, but there is always a doctor who will be happy to take your money. She paid cash to undergo barbiatric surgery. She has now lost over120lbs and is going to have to undergo a second surgery to enable her to put it back on. She cannot eat enogh to maintain a normal wefht. Placing a label on the UNTREATABLE syndrome or disease process all with the similar symptoms we are all so well aware of, may enable the medical researcher more definitive in his diagnosis. It does absolutely nothing for the caregiver on the firing line. All of us are sacrificing and adjusting to how much of a martyr do I choose to be. Labeling the casue of what I know to be my day to day m

welcome marty. sounds like you are a well seasoned caregiver for you dear wife (DW)- i can understand the daughters not wanting to have the testing. . i am sure you know we are a caring group who know all you are going thru and if you need a helping hand or shoulder, just vent away.
divvi

"If you had an INCURABLE disease would you want to be told?" This question has been around forever!

Back in hte 50s & 60s when there was no real Tx for cancer people routinely said they did NOT want to know, they just wanted to die peacefully (like a cancer death is easy & peaceful)

During the AIDS epidenic of the early 80s people routinely said "No! dont tell me if I have AIDS I want to die peacefully"
The fact that if you have AIDS you can spread it finally made testing acceptable.

Once a cure become available, people are happy to test and be told the results.

Now we have 'cured' AIDS and cancer and people are being asked if they want to be told they have AD. . . . . It all sounds so familiar.
Personally I chalk it up to our old friend denial. If I dont know something, then it does not really exist and it will go away on its own. . . .

There are some strong family connections realted to AD but there are just as many people without any family Hx. (my wife is one)
I think that once people realize and value the opportunity to prepare for the inevitable, more people will want testing.

When and if we can identify the exact genetic trait then testing and family planning will be a must!
The Jewish community has effectivly wiped out Tay-Sachs disease this way.