The Story of a Lifetime

FOR SHIMON AND JOYCE CAMIEL, it began in Singapore one day about five years ago. Joyce had taken to bed with food poisoning, and veteran traveler Shimon left the hotel on an errand. Suddenly, he realized he had no idea where he was, how to get back to their room, or even the name of the hotel. He was rescued by a friendly concierge. He came back white as a sheet, says Joyce. Then he burst into tears.

Naturally, they were concerned. They had visited more than 50 countries together. Shimon was only in his 60s and had lived in a kibbutz for 12 years. He had earned a Ph.D. in public health. This was a man who wrote books and never stopped mulling complex issues. How, they asked, could he have forgotten something as simple as where he and Joyce were staying?

Upon returning home, after a visit to a neurologist, they learned the answer: Alzheimers disease.

IN 1906, ALOIS ALZHEIMER reported his autopsy findings on a woman who is known to history only as Auguste D. At only 51, Auguste had been suffering for years from severe loss of memory and other neurological degeneration. Upon her death, Alzheimer dissected her brain and discovered thick deposits and fibrous tangles in and around the cells. The condition became known as Alzheimers disease, a label that has since become synonymous with the loss of a lifetime of memories. It has been linked to a number of famous namesRita Hayworth, Aaron Copland, Ralph Waldo Emerson and, of course, Ronald Reagan.

The number of people who develop the disease doubles after age 65. By the time a person reaches 85, there is a 50 percent chance he or she will demonstrate signs of Alzheimers. An estimated 4.5 million people in the United States now suffer from the disease, and as the baby boomers age, that number could reach 16 million by 2050.

What Alzheimer saw were abnormal clumps of beta-amyloid, a protein that would normally be eliminated from the body. In Alzheimers, the clumps, known as plaques, harden with the beta-amyloid at the center, surrounded by remnants of neurons, particularly those that produce acetylcholine, a neurotransmitter necessary for cognition.

Dead and dying nerve cells also contain neurofibrillary tangles, twisted strands of a protein called tau. That protein helps build microtubules, the transport system within the cell. When there is a problem with the tau protein, nutrients and other resources do not get sent through the cell, and normal functioning is disrupted.

The disease eventually causes cell death and tissue loss. The cortexthe thinking and planning centershrivels, as does the hippocampus, the area where new-memory formation occurs. The ventricles, the fluid-filled spaces in the brain, grow larger. Eventually there are fewer and fewer nerve cells and synapses to operate within the brain.

AS SHIMON AND JOYCE SIT at their dining table, they are surrounded by the mementos of their travels together. Joyce says that, looking back, there had been a host of symptoms before the episode in Singapore. Strange things had been happening, she recalls. Credit cards and other things would get lost.

Once the diagnosis was made, they started educating them-selves on the specifics of the disease. In that, they count themselves lucky to have the resources and knowledge to be able to learn about Alzheimers. The average Joe doesnt know where to go or how to get help, says Shimon. Theres either no information or too much misinformation out there.

For a while, Joyce says, Shimon was in denial about his condition, a not uncommon attitude among Alzheimers patients. The first year, she says, I was basically sworn to secrecy. He developed a number of strategies to hide his lapses from friends and even family members. Eventually, the news was broken to those close to the couple. Today, they are outspoken advocates for Alzheimers patients and their families, meeting with state representatives about issues such as healthcare, prescription costs and funding for research on the causes

THERE ARE TWO MAJOR TYPES of Alzheimers disease. Familial Alzheimers disease (FAD) is the early-onset form, generally striking people before they reach 65. FAD is associated with gene mutations on several chromosomes, and children of a parent with FAD stand a 50-50 chance of developing the disease themselves.

Late-onset Alzheimers disease is the much more common form. While there is a genetic link with this type as well, it is not as clearly defined as with FAD. One responsible gene is on chromosome 19. The gene is known as ApoE and has three formsApoE2, ApoE3 and ApoE4. Those who have inherited the ApoE4 form are at a greater risk of developing late-onset Alzheimers.

While ApoE4 genotyping can help with a diagnosis of Alzheimers, or suggest a possible risk factor, it is not a decisive diagnostic tool by any means. Approximately 20 to 25 percent of the population carries the ApoE4 gene expression, but certainly not all of them will develop Alzheimers. Researchers believe other genes are involved in a persons potential for the disease.

External factors may also increase the risk of developing the disease. Eating healthy foods, getting plenty of exercise and staying mentally active is sound advice at any time, but especially in preventing Alzheimers.

ADJUSTMENTS HAVE BEEN MADE in the Camiel household. They moved from a large house in Del Cerro to a charming 1920s Spanish-style home in Mission Hills that is smaller and easier to navigate. They remodeled the house, widening the doors and installing a ramp out front should Shimon need to use a wheelchair in the future. A calendar outlines daily activities for him to follow during the times Joyce isnt home. He walks or uses public transportation to get around; his drivers license was not renewed last year. I think I could have continued with it, he says about driving.

Joyce has a different take on the situation. He couldnt pass the test, she says. It was a painful moment for us. But we made lemonade out of it.

Shimon agrees, as he shrugs off the loss of what many consider a vital necessity in Southern California. I love taking the bus or the trolley, he says. I love to meet people. I never did like cars that much.

Although the Camiels have rearranged their lives so Shimon can remain in the comfort of their home as long as possible, they also have insurance for long-term care. Thats a good thing; costs for assisted-living quarters are up sharply, according to a survey conducted by Genworth Financial.

While the average rent on a one-bedroom assisted-living unit is hitting about $33,000 a year, that figure is calculated on a national level. In San Diego, costs for lodging and nursing in an Alzheimers care facility can range from approximately $42,000 a year for a shared suite to $84,000 or more for a one-bedroom apartment. Supplemental fees for added needs, such as medication monitoring, can tack on another $200 to $1,000 a month. Though expensive, assisted-living facilities do provide stimulation and care that might not be available in a home environment.

ON A BEAUTIFUL LATE-WINTER MORNING, eight residents at Sunrise at La Costa, a senior living facility, gather in a sunny room where bowls of blue flowers and ferns sit on a long table. This is a Memories in the MakingTM class, a time set aside for artistic endeavors and social interaction. Kathi Boylan, the volunteer artistin- residence for the facility, explains that they will be painting in watercolors. She and several aides then devote themselves to helping the residents, all of whom have some form of dementia. (While Alzheimers is one of the more common diseases that cause dementia, accounting for 60 to 70 percent of the diagnoses, other disordersvascular dementia, Parkinsons or Creutzfeldt-Jakob diseasecan also interfere with cognitive skills.) Gradually, after the sketching and the initial daubing of pinks and greens to catch the swirled glass of the bowls, the pictures start to take shape. The atmosphere is one of quiet concentration.

It soon becomes obvious that several of the residents have quite a bit of artistic talent. Jack works on his vase even after the others have started on their flowers. When it is suggested he might begin painting the ferns, he points out that he still has quite a bit left to do. When he is finished, his bowl is an opalescent green ball, like an ancient treasure from the sea.

Jo worked as an artist in earlier days, and her experience can be seen in her confident strokes as she dabs the brush to ensure just the right amount of paint. Meanwhile, Terrie, another perfectionist, checks her vase against the real thing every few seconds. Her brushstrokes are exquisitely precise.

Bessie titles her piece Green Brings Blue, and a minute later she says she doesnt remember painting it. One of the aides holds it up for her approval. Its okay, she pronounces after studying her work.

Another minute later, she says she doesnt remember her painting. Then youre going to be so impressed with what you did, says Boylan. She holds up the painting. Bessie nods.

I dont remember my painting, she says during cleanup.

Are you sure you did one? an aide asks affectionately. Bessie smiles. The aide holds it up. What do you think? she asks.

Its okay, Bessie answers.

THE DISEASE IS MERCILESS as it destroys brain functions. By the time lapses are noticeable to others, the disease has already advanced to stage 3 on the timeline used by the Alzheimers Association. More difficulties arise, from forgetting recent events to needing help choosing seasonappropriate clothing. By the last stage, the individual is unable to respond to surroundings or carry on a conversation.

Muscle control is lost, and the reflexes are abnormal. Eventually, the brain shuts down, and death shortly follows. No known drug can stop the progress of Alzheimers. However, cholinesterase inhibitors, such as donepezil (Aricept), rivastigmine (Exelon) and galantamine (Razadyne) can help slow the symptoms by delaying the breakdown of acetylcholine. Given that much of our knowledge about Alzheimers has come only within the past 15 years, the next few years are likely to yield even greater possibilities. Clinical trials are ongoing, with treatments that target beta-amyloid showing promise.

One study is looking at the possible use of stem cells to deliver neprilysin, a protein that erodes amyloid, to the plaques in the brain. Even green tea holds out hope as it contains a compound that reduces buildup of beta-amyloid. It may be possible that within a lifetime, Alzheimers disease will be eliminated, itself just a faint memory.

TRAVELING IS A LITTLE DIFFERENT these days for the Camiels. Shimon wears a Safe Return bracelet in case he gets disoriented. They go with a group of friends rather than just the two of them.

But still they go. This spring their plans include a trip to Turkey and Israel. First on the schedule is a stop up north in Sacramento. In terms of a vaccine, says Joyce, I think were on the cusp. But we cant do it without support from government officials. They have to be educated, too.

They credit their optimism and emotional strength to the support they get from family members, friends and groups where they can share their experiences with those who know what they are going through. They take each day as it comes, but such a philosophy is nothing new to Shimon.

I was in the Israeli Army, he says. All I wanted was to make it to 32. I think thats happened.

For more information on Alzheimers disease and resources available both in San Diego and across the country, visit the Alzheimers Association San Diego/Imperial chapter at sanalz.org or call 800-272-3900.

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