would i want to know?…would you?

A question we ask ourselves, those of us with loved ones who have succumbed to Alzheimer’s.

I must admit to having pondered the possibility of being tested myself. Wouldn’t it be prudent to prepare myself, my family? Get my life in order; do what I need to do…before I can’t.

Wouldn’t I want to go out with one, big, last hurrah? Go out with a bang! Dare to live on the edge, knowing that now is “as good as it gets.”

Ronald Reagan

Ron Reagan chose not to know if he had the gene responsible for his dad’s demise. President Reagan suffered the debilitating effects of Alzheimer’s soon after he left office. The son’s decision was predicated upon the simple fact that as yet there is no cure. I was swayed, but not totally convinced myself. Until I read the following article in the  Wall Street Journal.

English: A healthy brain compared to a brain s...

English: A healthy brain compared to a brain suffering from Alzheimer’s Disease (Photo credit: Wikipedia)

The Curse of a Diagnosis
by Melinda Beck
     If you were in the early stages of Alzheimer’s disease, would you want to know?
     That question will haunt a growing number of people and their families as scientists devise more ways to diagnose the degenerative brain disease before it causes severe symptoms, but still can’t prevent or cure it.
     Linda Dangaard underwent a spinal-tap test last year confirming suspicions of early Alzheimer’s disease at age 56. Allowing his wife to be tested “was the biggest mistake of my life,” says Colin Dangaard, age 70. Even though she is still functional and vibrant and works in the family’s Malibu saddle-importing business, the diagnosis cost her her driver’s license, many of her friends and much of her self esteem, her husband says. “Her golden years were ripped out from under her by a diagnosis that I think is cruel, because there’s nothing anybody can do about it.”
     “It feels like a bomb has gone off in my life,” says Mrs. Dangaard, who concedes that she sometimes gets confused and repeats herself. “I also ask myself, ‘Why me?’ I eat right. I exercise. No one else in my family has this.”
     Traditionally, the only way to confirm Alzheimer’s was with an autopsy, when the disease’s characteristic plaques and tangles are found in a patient’s brain. Before that, doctors diagnose it on the basis of symptoms, once they rule out other explanations. But experts say the plaques and tangles start forming 10 to 20 years before symptoms appear.
     New tests are emerging that can detect those early brain changes, and more are on the horizon. Last month, the Food and Drug Administration approved a radioactive dye, Amyvid, that makes brain plaque visible on a PET scan. It is expected to be available this summer.
     The spinal tap test that Mrs. Dangaard had measures changes in the cerebrospinal fluid associated with brain plaques and tangles. It has been available for several years, but used mainly in research settings.
     Neither test is covered by insurance or Medicare, and neither is definitive alone. Negative findings reduce the likelihood that cognitive impairment is due to Alzheimer’s. But 20% to 30% of people over 65 have some plaques in the brain and many are cognitively normal. It is unclear if they will ever develop the disease.
     Genetic tests can identify gene variations that raise the risk of Alzheimer’s to varying degrees. One rare variation virtually guarantees that a carrier will develop Alzheimer’s at an early age; their offspring have a 50% chance of inheriting it. Researches are testing a drug that could potentially prevent Alzheimer’s in a large Colombian clan that carries the gene variation. As in many research trials, family members won’t be told who has it and who doesn’t, since the knowledge can be devastating without effective treatments.
     For patients already experiencing memory problems, the ethical issues are different, experts say. It pays to have a medical evaluation, since many treatable conditions can cause dementia-like symptoms. Once those are ruled out, neurologist John Ringman at the University of California, Los Angeles, says he typically asks patients with mild cognitive impairment if they want to know if it is likely to progress to Alzheimer’s–even though the knowledge won’t change their treatment. “Some people say, ‘Doc, I want to know everything.’ Other people say, ‘If it isn’t going to affect the treatment, I should just live my life.'”
     Mrs. Dangaard’s sister, Dawn Coffee, says it was Linda who first raised concerns about her tendency to repeat herself several years ago. Mrs. Coffee and their mother–all of whom work in the Dangaards’ business–were concerned as well, so they encouraged her to investigate.
     Her primary-care doctor found that she had a severe deficiency of vtamin B-12 which can mimic Alzheimer’s. B-12 injections helped a little, but when her symptoms persisted, they consulted a neurologist, Paul Dudley. He conducted more tests, including two MRIs, which were inconclusive, and suggested they seek a more definitive diagnosis at UCLA. Still, Dr. Dudley found enough evidence of dementia that he notified state health authorities, as required by California law, triggering a review of her driver’s license.
     At UCLA, Mrs. Dangaard fared poorly on tests of memory and word recognition. But her age and the insight she displayed weren’t typical of Alzheimer’s, so Dr. Ringman suggested the spinal tap. “I wanted to make sure I hadn’t missed anything,” such as an infection or inflammation in the spinal fluid, he says. (Drs. Ringman and Dudley both had the Dangaard’s permission to discuss her case.) The spinal tap found levels of beta amyloid protein and tau “consistent with Alzheimer’s disease,” he says. And given her scores on the cognitive tests, he adds, “it isn’t what I’d call the early stages–she has significant dementia.”
     Mr. Dangaard disputes that his wife is significantly impaired and says the diagnosis has done more damage than the disease. “Sure, she can’t do the complicated ordering that she used to do in our business, but there are lots of other things she does very well,” he says.
     Losing her driver’s license has been particularly hard. “It is like house arrest in California,” he says. Mrs. Dangaard attempted to win it back but failed the written test. Mr. Dangaard blames the stress of the situation and says she misses only one or two questions out of 220 when he quizzes her at home. “She can out-Sudoku me,” he says.
     Mrs. Dangaard jokes that while her short-term memory can be hazy, “I figure if I keep doing those tests over and over again, eventually they’ll be in my long-term memory and I won’t have a problem.” Asked if she thinks she has Alzheimer’s, Mrs. Dangaard says, “I guess my wiring is a little off. But knowing it is worse than having it.”
     Her husband says, “There’s no way this diagnosis benefits people who have it. It just crushes your spirit.”
     Her sister has a different view. “I love my sister dearly. We’ve been best friends all our lives. But she’s gotten worse and he’s in denial,” says Mrs. Coffee, who says that disagreements over Linda’s condition have caused a rift in the family.
     Experts in caring for Alzheimer’s patients say it is typical for family members to disagree in such cases. It is also typical for people with Alzheimer’s to remain highly functional in some areas of life and deteriorate in others. “Patients often work very hard to compensate for it, but there comes a point where they can’t hide it anymore,” says Lori Bliss, a care manager at Senior Concerns, a nonprofit organization that serves adults with special needs in nearby Thousand Oaks, Calif.
     As devastating as it is, an early diagnosis can give families time to plan and let patients participate in financial, legal and health-care arrangements. The course of the disease is often unpredictable. Some people work and remain independent for years after a diagnosis. “Families should let people with Alzheimer’s do as much as they can and be there as a safety net,” says Norma Featherston, a senior care consultant at the Alzheimer’s Association in Ventura County, Calif. Staying active and connected socially is vital to patients’ well-being, particularly in the early stages, she adds.
     That is one thing everyone agrees on in Linda Dangaard’s case: “I just want her to live every day and be as happy as she can be,” her husband says.

With ongoing research many diseases are being dealt with successfully. It’s not the case with Alzheimer’s. Longing to know if it’s in one’s genes is logical. But we are not devoid of emotions, and feelings. Most of us would be unable to fight the tidal wave of resignation. Sinking into depression would be the equivalent of standing in quicksand. The stress and worry of knowing one’s fate might even accelerate the progression of Alzheimer’s.

Wouldn’t it be bliss if we could rid ourselves of the weaknesses of the flesh, face the inevitable head on, and leave our material trappings behind … happily … peacefully? That would be my “happily-ever-after” wish. Unfortunately, life’s not a fairy tale…

The Reagan family in 1960, from left to right:...

The Reagan family in 1960, from left to right: Ronald Reagan, Ron Reagan, Nancy Reagan, and Patti Reagan (Photo credit: Wikipedia)

…so we do what we can…to make each moment…worth living… 

………hugmamma.  

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like flies buzzing around…inside my brain

A proud mother watches from afar as Prince Wil...

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One more thought before I finally end all discussion about Sarah Bradford’s Diana – Finally, The Complete Story. It centers upon her devotion to her sons, William and Harry. Not that there ever were any doubts. But first-hand testimony of a heretofore, unheard from source, only strengthens the universally held belief that the Princess of Wales excelled at mothering. 

According to Meredith Etherington-Smith, then marketing director of Christie’s Worldwide, who from September 1996 to July 1997 helped Diana prepare for the sale of her gowns to aid her favorite charities:

Queen Elizabeth The Queen Mother

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The British Royal Family in 1880.

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One thing she did take seriously was her role first as mother to the boys and second, as Meredith put it, as the Queen Mother of the twenty-first century. ‘Her relationship with the boys was patently a wonderful one…She was a very good mother. I expected them to be more protective of her than they were, and they weren’t, they weren’t mewling and puking and clustering round her. They didn’t have a neurotic relationship. It seemed to me to be perfectly healthy and normal and nice and a great tribute of all to Diana and secondly to Charles.’ ‘Constitutional plans–well, she felt her long-distance role was to be the Queen Mother of the twenty-first century, that the influence the Queen Mother had had on her grandchildren in a way, she felt that was the kind of role which in a curious way she had been chosen for and one did feel that there was a bit of divine right entering into this, a little bit of fate. And she felt that William should be a democratic King, that the boys needed to have friends, that they needed to know their generation, they needed to know politicians, not just Tory ones, that they needed to know the Blair children. They needed to be part of contemporary English life, not an English life that was really out of date by the end of the war–and I’m paraphrasing some quite long conversations about this. And her job was to make sure they were released from the glass cage, and that when he did come to the throne, a lot of people would know him, and he wouldn’t be a mystery, wouldn’t be a royal freak, that he would be a person. I think that she very much thought she would be a power behind the throne…Diana emphasized her desire that William should be a ‘very English King‘: she felt that her Spencer blood had a lot to contribute. ‘She felt that because of the spider’s web of marital alliances and blood they (the Royal Family) weren’t English. “I come from an English family,” she had said proudly, and “we (the Spencers) are a lot older than they are.” She was very proud of the Duke of Marlborough, for instance.

The Prince Willam Cup. The trophy that is cont...

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Who is hotter? Prince Harry or Prince William?

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Diana was very anxious that her boys should not become isolated as the previous royal generation had been, as indeed their father had been. That was why she had wanted the boys, and William in particular, to go to Eton because they would have proper friends there and not sycophants, ‘Diana said, “There’s no messing around at Eton about someone being the heir to the throne. If you’re not popular, charming, intelligent, or good at games, you’re not going to rate, are you?” And so William knows a lot of people. And the interesting thing about that she said, “I think they’ll be protection, those friends too. They’ve grown up together and they’ll be protective.” And they are. You don’t see grab shots of William that often, and why? Because his friends don’t utter. She’d thought all this through. That’s what I mean by being smart.’ ‘They had money which they carried and spent and they went shopping. In other words she was trying to provide as normal a life as possible–they could come out from behind the glass window, and that was her great legacy.’

Princess Diana dancing with John Travolta in t...

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Princess Diana

 Why would Princess Diana be so forthcoming with Etherington-Smith, you ask? Probably because she was older, very much like her other confidantes, Lady Annabel Goldsmith and Margueritte Littman. “Meredith surmised that Diana was very comfortable in the company of older women. ‘I think possibly, without being too psychotherapeutic about it, because of the lack of a mother…most of her confidantes apart from Rosa Monckton, were actually older women…and I think she felt very comfortable, they weren’t competition, they were fun and she could become slightly girly with them without the baggage of “I’m the most beautiful person in the world”…’ “

Another random, final, or maybe not so final, thought occurred as I lay awake last night, reading I Love You, Ronnie. President Reagan had a very human, extremely sentimental side. Apart from his family and a few close friends of the couple, I’m sure no one suspected what a great romantic he was, and how he could wax so poetic. At the same time, however, his vulnerability as a human being comes through. To know that the man who could dial up a third world war lay bare his soul in love letters to his wife, is hugely touching. I find myself remembering Ronald Reagan as President, but trying to imagine this newly revealed man behind the strong facade. What I picture is someone like my husband, my father-in-law, friends in high corporate positions. Not only them, but husbands and fathers the world over who, to the best of their abilities, care for their families.

Ronald Reagan and Nancy Reagan aboard an Ameri...

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The following letter was from a man to his wife, his best friend. It’s a letter any man could’ve written, in fact. This one just happened to be from a President to his First Lady, although at the time he was a working stiff, and she was a housewife.

Ronald Reagan
Pacific Palisades
Thurs. (May 24, 1963)

My darling
     Last night we had our double telephone call and all day (I didn’t work) I’ve been re-writing the story of my life as done by Richard Hubler. Tomorrow I’ll do my last day of location and then I’ll call you and I’ll tell you I love you and I’ll mean it but somehow because of the inhibitions we all have I won’t feel that I’ve expressed all that you really mean to me.
     Whether Mike helps buy his first car or spends the money on sports coats isn’t really important. We both want to get him started on a road that will lead to his being able to provide for himself. In x number of years we’ll face the same problem with The Skipper and somehow we’ll probably find right answers. (Patti is another kind of problem and we’ll do all we can to make that one right, too.) But what is really important is that having fulfilled our responsibilities to our offspring we haven’t been careless with the treasure that is ours–namely what we are to each other.
     Do you know that when you sleep you curl your fists up under your chin and many mornings when it is barely dawn I lie facing you and looking at you until finally I have to touch you ever so lightly so you won’t wake up–but touch you I must or I’ll burst?

Cropped screenshot of Ann Blyth from the trail...

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     Just think: I’ve discovered I can be fond of Ann Blyth because she and her Dr. seem to have something of what we have. Of course it can’t really be as wonderful for them because she isn’t you but still it helps to know there are others who might just possibly know a little about what it’s like to love someone so much that it seems as if I have my hand stretched clear across the mountains and desert until it’s holding your hand there in our room in front of the fireplace.
     Probably this letter will reach you only a few hours before I arrive myself, but not really because right now as I try to say what is in my heart I think my thoughts must be reaching you without waiting for paper and ink and stamps and such. If I ache, it’s because we are apart and yet that can’t be because you are inside and a part of me, so we aren’t really apart at all. Yet I ache but wouldn’t be without the ache, because that would mean being without you and that I can’t be because I love you.

Your Husband

Queen Mother Rose

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…would that all men could, and would, …..bare their souls
…..without flinching ….. at the thought ….. hugmamma.