Almaden Resident

Cover Story

Photograph by Vicki Thompson

Arranging the Pieces: Joy Walters uses puzzles, word searches and crosswords as therapy to help her mind stay sharp.

Remembering Alzheimer's

Joy Walters brings awareness of disease to local community

By Lydia Sarraille

When her memory began to slip, Almaden Valley resident Joy Walters said she knew something was amiss. She had problems recognizing everyday objects in her office, and just keeping her house tidy became a challenge. She got lost easily, even when she was familiar with the place.

As a former Santa Clara County social worker and licensed psychotherapist with a private practice, Walters took care of abused and neglected children. The day the children she treated began to get upset with her for not remembering the things they said, Walters said she knew she had a real problem.

Walters said she asked her friends if she seemed different to them, but they said she seemed fine. Walters had a bad feeling despite her friends' reassurance, so she visited her doctor, and he ran some tests.

"I was so nervous taking the tests," Walters said. "I could hardly answer the questions."

On July 11, 2005, a few months after she first began to notice the problems, Walters was diagnosed at Stanford Medical Center with early-stage Alzheimer's disease.

The news, Walters said, left her little choice but to phase out her work and begin her retirement.

"I just couldn't be there for my patients the way I needed to be," she said.

Despite the change of pace, Walters stays upbeat and has dedicated much of her time to helping others understand the disease.

"To me, this is the best time in my life," Walters said. "I'm very grateful. I have a loving husband who has stood by me and great friends who are very supportive. "

She recently spoke about her disease at the state Capitol as part of a larger discussion of how California can prepare for the rising numbers of Alzheimer's diagnoses in the state.

Her testimony was given at a special hearing of the state senate Health Committee's Aging and Long-Term Care Subcommittee.

The Feb. 7 hearing was convened by state Sen. Elaine Alquist (D-San Jose), who requested that Walters come and speak at the event.

Walters said she agreed to speak because she hoped her testimony would help increase understanding of Alzheimer's.

In partnership with the Alzheimer's Association, Alquist said she would help write a bill for the state Legislature calling for improvements in the diagnosis, care and treatment of Alzheimer's patients.

Taking part in medical studies is another way Walters said she tries to make a difference.

"I hope that by taking part in these studies, I can help researchers learn more about how to help those who come after me," Walters said.

Walters is currently enrolled in a double-blind Pfizer study on the effects of Lipitor, a cholesterol medication, on people with Alzheimer's taking Aricept and similar medications.

Walters said she believes the medications she is on have given her some relief, but she believes in taking a holistic approach to combating her disease, so treatment doesn't end with drugs.

"I stay active," Walters said. "I do physical and mental exercises and I socialize and meditate."

Walters said in tests of her memory, her scores have not gone down recently. She believes her combination of mental exercise, physical fitness and Aricept have kept her symptoms from significantly advancing so far.

According to information available on the Alzheimer's Association website, Aricept is one of a series of drugs designed to inhibit the breakdown of acetylcholine, a chemical messenger in the brain.

Aricept cannot cure the disease, only maintain sufficiently high levels of acetylcholine to offset the loss of connection a patient's brain cells suffer as the disease progresses. The drug only lessens the symptoms, and only works temporarily until the disease progresses past the point that the medication can work.

The death of and loss of connection between brain cells is a main characteristic of Alzheimer's.

As the most common form of dementia, Alzheimer's disease has claimed more than 4.5 million Americans, and it is projected that 14.3 million Americans will have the disease by 2050.

The association's purpose is to find preventive methods, treatments and an eventual cure for Alzheimer's disease. It has provided more than $200 million to Alzheimer's researchers since 1982.

"We're so lucky to have the Alzheimer's Association," Walters said. "The support groups have been wonderful, and they have so much information and help to give."

John Timbs runs the support group Walters attends at Valley Medical Center in West San Jose.

The group is for people with early stage Alzheimer's. Those who come to the weekly meetings share their ups and downs and, Timbs said, are able to take emotional support from knowing the people around them struggle with the same problems. Another support group is held for family members of Alzheimer's patients, which Walters' husband Bill attends.

"I know it sounds as if they would be quite a dismal group, but they're very upbeat," Timbs said.

Timbs said one of the biggest challenges Alzheimer's patients face is feeling dependent and helpless, even when they may be much more capable than they or others realize.

"The core of the matter is that while everybody knows what Alzheimer's is, they tend to think of it in terms of someone who is already very far gone," Timbs said. "Especially in the early stages, these are just people who are trying to manage some very frustrating symptoms and trying to live their lives normally without being a burden to anyone. Walters is a prime example of that. She is very practical and optimistic."

Issues of how to cope with embarrassing consequences of memory lapses, such as forgetting a loved one's name, and how to occupy their time when they can no longer work are among the frequently discussed subjects at the group meetings, Timbs said.

Group members give tips to each other about the everyday aspects of living with the disease and share their feelings about how they are coping.

Timbs said the goal of the support group is to help patients face their problems directly.

"With an illness like this that doesn't have a remedy, the thing to do is regain your sense of control," Timbs said. "To be told you have this disease is like a death sentence. Where do you go with that? You live your life and enjoy the time you have. Being proactive, doing everything they can to help control their symptoms, taking part in studies and helping to find a cure are all things they can do. That's all anyone can do."

Walters said for her part, she will continue to attend her support group and do all the other things she has done to help herself and others for as long as she can.

"I'm so lucky," Walters said. "I have my loving husband and my friends and retirement to enjoy. Life is good."

For information on Alzheimer's disease or to donate, visit www.alz.org.