Before Alzheimer's disease became widely known, some people were always calling it "old-timer's," said Selly Jenny over a sit-down dinner last week at the posh Pacific Club in Newport Beach. Jenny was chairman of the dinner, an annual salute to the Founder's Club of the Orange County chapter of the Alzheimer's Disease and Related Disorders Assn.
"They didn't understand Alzheimer's was named after the German who discovered it, Alois Alzheimer. And now when I visit retirement homes to speak about the disease, I hear people calling it 'Al Himer's,' that disease, they say, 'discovered by some guy who lives near Buena Park!' "
The point Jenny was making over her asparagus vinaigrette and Filet Sophie was that the uncurable, memory-stealing illness has become so well known that it has penetrated even the often insular world of the retired. "I guess calling it Al Himer's helps them remember. And they're afraid, afraid to go the doctor for fear they'll learn they have it. I tell them there are some 60 or 70 other diseases that can cause similar symptoms.
"People need to know that at ADRDA (the association) we are just as concerned about the related disorders, some of which are curable or controllable, as we are about Alzheimer's disease. That's why we carry this long, complicated name around."
The chapter is committed to providing funds for research, education, advocacy and patient and family service. Jenny's involvement in the Costa Mesa-based association came when she became "rather desperate," she said, after learning that she could no longer visit her mother, an Alzheimer's victim.
"I had been flying to San Francisco weekly to see her. And then she started having these horrible catastrophic reactions after I left. She would cry because she had not been nice enough to 'that lady.' She would sob because she had been awful to 'that lady.' She became so terribly upset they had to give her tranquilizers."
Jenny's mother had what she called an "invisible little chain. She still knew me, I believe. Had flashes of recognition. Occasionally, I would see 'help me' written on her face, or 'I love you' or 'I'm frightened,' and then watch her return to that fog. . . . That's when I called UC Irvine, and they told me about ADRDA. I thought if I couldn't see my mother, I could help someone else. Maybe someone else's mother. . . ."
Like Jenny, board president Steven La Mar joined the association because the thunderbolt of Alzheimer's struck near him.
Disease Struck Suddenly
"My dad has gone from a man who could do backflips on his 76th birthday to a 77-year-old nursing-home resident. And I've watched my mother age some 10 years over the stress of dealing with the disease."
One of La Mar's primary goals for the association this year is to establish a respite care program in Orange County. "We've talked to people at St. Joseph Hospital (in Orange) about taking advantage of some of the home care programs. A person would go into the home of an Alzheimer victim to care for him and at the same time give the family a chance to recover from the constant burden of care. ADRDA would provide the training and support that would make people capable of caring for an Alzheimer's victim."
Before the dinner, attended by nearly 50 people, former board president Maria Estrada told guests the event honored those who "remembered those who could no longer remember." Afterward, chapter founder Joan Dashiell awarded volunteer Nina Harper the first Joan Dashiell Volunteer of the Year Award. Harper has produced the chapter's newsletter since the chapter was founded in 1982.
In 1986, Founder's Club members donated $34,000 to the chapter. Also among those attending the affair were George Dashiell, Sharon and Jerry Bowen, Len Broido, Nora and Charles Hester, Jeannie La Mar, Judy and Martin Schneyer, Marilyn and James Spain, Mary Thompson, and Carol and Kent Wilken.
Ken Barnheiser is executive director, and Dr. Jerome Tobis is chairman of its medical and scientific advisory committee.