How Do You Live Knowing You Might Have an Alzheimer’s Gene?

[jimmy olsen]

It most be fucking horrifying to have that fate hanging over you like the Sword of Damocles.

Posted the first of 8 pages, the rest can be read here.
http://www.nytimes.com/2012/06/10/magazine/an-alzheimers-gene-one-familys-saga.html?_r=1

How Do You Live Knowing You Might Have an Alzheimer's Gene?

By GINA KOLATA
Published: June 7, 2012 103 Comments

It seemed as if it would be a perfectly ordinary occasion, that hot August day in 1959. Three generations of a large Oklahoma family gathered at a studio in nearby Perryton, Tex., to have a photo taken of the elders, 14 siblings ranging in age from 29 to 52. Afterward, everyone went to a nearby park for a picnic.

Among the group were two cousins, Doug Whitney, who was 10, and Gary Reiswig, who was 19. Doug's mother and Gary's father were brother and sister. Doug does not remember any details of that day, but Gary says he can never forget it. His father, and some of his aunts and uncles, just did not seem right. They stared blankly. They were confused, smiling and nodding, even though it seemed as if they weren't really following the conversation.



Seeing them like that reminded Gary of what his grandfather had been like years before. In 1936, at the age of 53, his grandfather was driving with his grandmother and inexplicably steered into the path of a train. He survived, but his wife did not. Over the next decade, he grew more and more confused. By the time he died at 63, he was unable to speak, unable to care for himself, unable to find his way around his house. Now here were the first signs of what looked like the same condition in several of his children.

"We were looking at the grimness face to face," Gary says. "After that, we gradually stopped getting together."

It was the start of a long decline for Gary's father and his siblings. Their memories became worse, their judgment faltered, they were disoriented. Then one day in 1963, Gary, who was living in Illinois at the time, went with his mother to take his father to a doctor in Oklahoma City. The doctor had recently examined his father's brother, and after administering some simple memory tests and hearing about the rest of the family, concluded that he probably had Alzheimer's disease. Gary and his mother took his father in for the same exam, and the doctor confirmed Gary's fears.

Gary's mother wanted to keep his father's condition a secret and asked Gary to tell no one. But his uncle's wife, Aunt Ester May, wanted to let everyone in the extended family know. Most reacted the way Gary's mother had — they wanted to keep the information to themselves.

When Doug first heard the news, he hoped his mother, Mildred Whitney, might escape the terrible illness, and for a few years she seemed fine. But on Thanksgiving Day 1971, Mildred, who was then 50 and never used recipes, could not remember how to make her famous pumpkin pie.

That was the beginning of her precipitous fall. Five years later, after she lost her ability to walk, or speak, or recognize her own children, she died. In the end, 10 of those 14 brothers and sisters developed Alzheimer's, showing symptoms, on average, at around age 50. The family, once close, soon scattered, each descendant of the 14 privately finding a way to live with the possibility that he or she could be next.

More than five decades later, many of these relatives have come together to be part of a large international study of families who carry an Alzheimer's gene. The study, known as DIAN (for Dominantly Inherited Alzheimer Network), involves more than 260 people in the United States, Britain and Australia and includes at least 10 members of Doug and Gary's family. Since 2008, researchers have been monitoring the brains of subjects who have mutations in any of three genes that cause Alzheimer's to see how the disease develops before symptoms occur. By early next year, DIAN researchers plan to begin a new phase. Subjects will receive one of three experimental drugs that the researchers hope will slow or stop the disease in people otherwise destined to get it. (A similar study is expected to start around the same time in Colombia, testing one drug in a large extended family that carries a mutation in one gene that causes Alzheimer's.)

Though as much as 99 percent of all Alzheimer's cases are not a result of a known genetic mutation, researchers have determined that the best place to find a treatment or cure for the disease is to study those who possess a mutation that causes it. It's a method that has worked for other diseases. Statins, the drugs that are broadly prescribed to block the body's cholesterol synthesis, were first found effective in studies of people who inherited a rare gene that led to severe and early heart disease.

Alzheimer's is the sixth leading cause of death in this country, and is the only disease among the 10 deadliest that cannot be prevented, slowed or cured. But DIAN investigators say that within a decade there could be a drug that staves off brain destruction and death.

This sense of optimism has been a long time coming. In 1901, a German psychiatrist, Alois Alzheimer, first noted the disease when he described the case of a 51-year-old woman named Auguste Deter. "She sits on the bed with a helpless expression," Alzheimer wrote. "What is your name? Auguste. Your husband? Ah, my husband. She looks as if she didn't understand the question."

[HisMajestyBOB]

I had myself checked for Alzheimer's, but I don't remember the results.

[Brazen]

You may know my mum died after suffering from early-onset Alzheimers for 10 years. She started having symptoms while she was still working.

As with many conditions, heredity is a relatively small component. You also can't trust avoiding exacerbating factors - smoking was thought to help prevent it, though recent research indicates in significantly increases your risk of getting it, and using aluminium pans is no longer a contender, for example.

I wouldn't want to know if I have heredity Alzheimers as there would be nothing I can do about it, though it might help identify the cause of the symptoms earlier. Even then, there's no cure and you stop getting drugs that slow it down once you get past a certain point.

At least I have no offspring to be a burden to.

[CountDeMoney]

I had myself checked for Alzheimer's, but I don't remember the results.

Damn, ripped off the gag I wanted to use.     "How do I live with knowing I have an Alzheimer's gene?  I forget about it."

[Brazen]

Dad told me this:

I was sitting in the Alzheimer's specialist's waiting room waiting for your mum to go through the assessment tests. To pass the time I chatted to the old boy next to me.

"Have you been here before?" I asked.
He looked confused and replied, "What do you call that flower, you know, the one with the red petals and thorns?"
"Rose?" I suggested.
"That's it!" he replied, turning to the woman the other side of him. "Rose, have we been here before?"

[CountDeMoney]

Ha!

[Barrister]

It most be fucking horrifying to have that fate hanging over you like the Sword of Damocles.

My wife's family has Huntington's disease.

http://en.wikipedia.org/wiki/Huntington%27s_disease

It's a little bit like Alzheimers in that it does impair memory and thought, but also affects your physical skills.  Even more so that Alzheimers though it is purely genetic.  If one of your parents have it you have a 50% chance of getting it.  If you carry the gene for it you are guaranteed to get it - it's just a question of when.

So for my wife, her grandmother had it, so she technically has a 25% chance of having it.  She is probably okay though since it would depend whether or not her father has it, and by age 60 he is past the point when symptoms would normally appear (not guaranteed though).

Two of her aunts have it though (dads sisters).  The one aunt had a fairly quick progression even during the last 8 years I've known my wife.  At the beginning she was almost normal - had a few odd muscular twitches.  She died a year ago, and for the last couple years she was in a home.  Sometimes wouldn't recognize her own husband, but usually would but would pick bizarre fights with him.

This aunt has two sons, one of whom is one of my wife's closest cousins.  He works in law enforcement so we always have plenty to talk about.  He was over at our house a week ago for little Tim's 2nd birthday party.  He brought his little boy over.  So he has a 50% chance of getting Huntington's, and his son, 25%.

Obviously he doesn't like the possibility of getting Huntington's, but I think he'd completely disagree with calling it "fucking horrifying".  If anything it gives you a bit more of a "live life in the moment" attitude, that you can't put your life on hold and you can't worry about what might be.  It didn't stop him from having kids either.  Nobody's genes are perfect, and you can lead a perfectly normal life for several decades before symptoms start to appear.  Why deny creating a life merely because of the chance that after 40 years or so you'll suffer from a disease?

[Cecil]

I dont think I have to worry overly much about that. All my grandparents either have r are turning 90 soon and they are as clear in the head as any middle aged person. And excepting my maternal grandmother they are still rather active. My 91 year old paternal grandfather learned how to drive a segway a few weeks ago and had a merry time driving around at maximum speed. 

[CountDeMoney]

Pretty sure I don't have an dementia or Alzheimer's in the family;  then again, not many have ever lived long enough to find out.

[Martinus]

You may try to forget about it.

[Martinus]

I had myself checked for Alzheimer's, but I don't remember the results.

Damn, ripped off the gag I wanted to use.     "How do I live with knowing I have an Alzheimer's gene?  I forget about it."

Crap.

[PRC]

Eat more Indian food:

http://www.news-medical.net/news/2004/12/28/7047.aspx

Indian curry may be the next Alzheimer's weapon

A dietary staple of India, where Alzheimer's disease rates are reportedly among the world's lowest, holds potential as a weapon in the fight against the disease.

The new UCLA-Veterans Affairs study involving genetically altered mice suggests that curcumin, the yellow pigment in curry spice, inhibits the accumulation of destructive beta amyloids in the brains of Alzheimer's patients and also breaks up existing plaques.

Reporting in the Dec. 7, 2004, online edition of the Journal of Biological Chemistry, the research team also determined curcumin is more effective in inhibiting formation of the protein fragments than many other drugs being tested as Alzheimer's treatments. The researchers found the low molecular weight and polar structure of curcumin allow it to penetrate the blood-brain barrier effectively and bind to beta amyloid.

In earlier studies (Journal of Neuroscience, 2001; 21:8370-8377; Neurobiology of Aging, 2001; 22:993-1005), the same research team found curcumin has powerful antioxidant and anti-inflammatory properties, which scientists believe help ease Alzheimer's symptoms caused by oxidation and inflammation.

The research team's body of research into curcumin has prompted the UCLA Alzheimer's Disease Research Center (ADRC) to begin human clinical trials to further evaluate its protective and therapeutic effects. More information about enrolling in this and other clinical trials at the Center is available by calling (310) 206-3779 or online at http://www.npistat.com/adrc/Treatment.asp.

"The prospect of finding a safe and effective new approach to both prevention and treatment of Alzheimer's disease is tremendously exciting," said principal investigator Gregory Cole. He is professor of medicine and neurology at the David Geffen School of Medicine at UCLA, associate director of the UCLA Alzheimer's Disease Research Center, and associate director of the Geriatric Research, Education and Clinical Center at the VA Greater Los Angeles Healthcare System at Sepulveda, Calif.

"Curcumin has been used for thousands of years as a safe anti-inflammatory in a variety of ailments as part of Indian traditional medicine," Cole said. "Recent successful studies in animal models support a growing interest in its possible use for diseases of aging involving oxidative damage and inflammation like Alzheimer's, cancer and heart disease. What we really need, however, are clinical trials to establish safe and effective doses in aging patients."

The research was funded by the Siegel Life Foundation, Veterans Affairs, Alzheimer's Association, UCLA Alzheimer's Disease Research Center and private donors.

Alzheimer's disease (AD) is an irreversible, progressive brain disorder that occurs gradually and results in memory loss, unusual behavior, personality changes, and a decline in thinking abilities. These losses relate to the death of brain cells and the breakdown of the connections between them.

The disease is the most common form of dementing illness among middle and older adults, affecting more than 4 million Americans and many millions worldwide. The prevalence of Alzheimer's among adults ages 70-79 in India, however, is 4.4 times less than the rate in the United States.

Widely used as a food dye and preservative, and in some cancer treatments, curcumin has undergone extensive toxicological testing in animals. It also is used extensively in traditional Indian medicine to treat a variety of ailments.

Other members of the research team are Fusheng Yang, Giselle Lim, Aynun Begum, Mychica Simmons, Suren Ambegaokar, Ping Ping Chen of UCLA; Rakez Kyad and Charlie Glabe of the University of California at Irvine; and Sally Frautschy of UCLA and the Greater Los Angeles VA Healthcare System at Sepulveda.

The Alzheimer Disease Research Center at UCLA, directed by Dr. Jeffrey L. Cummings, was established in 1991 by a grant from the National Institute on Aging. Together with grants from the Alzheimer's Disease Research Center of California and the Sidell-Kagan Foundation, the center provides a mechanism for integrating, coordinating and supporting new and ongoing research by established investigators in Alzheimer's disease and aging.

Veterans Affairs Greater Los Angeles Health Care System and Sepulveda Ambulatory Care Center combine resources to form a unified Geriatric Research Education and Clinical Center, one of 20 nationwide. These centers of excellence are designed to improve health care and quality of life to older veterans through the advancement and integration of research, education and clinical achievements in geriatrics and gerontology into the total VA health care system and broader communities.

[Scipio]

Drink more coffee, eat more turmeric, drink more red wine, eat less red meat.

Most importantly, DWBH.