Alzheimer’s advocate receives award for work against disease

A blog, book, fundraising walk, public policy forum and life’s mission of Linda Fisher are all dedicated to a disease that one American will develop every 71 seconds — Alzheimer’s.

Fisher, 56, was the first recipient of the Alzheimer’s Association Missouri Coalition Advocate of the Year Award. She knew about the honor before the presentation March 12 in Jefferson City as part of Memory Day, where 250 Alzheimer’s advocates gathered to speak to Missouri legislators. But, when she received a phone call about the award, she “was just floored. I didn’t expect it.”

An advocate of 13 years, Fisher first became involved after her husband, Jim, was diagnosed with early onset dementia of the Alzheimer’s type when he was 49. Her reaction was similar to most, she said. First came denial, then feelings of helplessness and finally acceptance.

“I think you go through the same stages you go through with any disease,” Fisher said.

Fisher sought help from the Alzheimer’s Association. “They were just there for me from the beginning,” she said.

Fisher said she will always be an Alzheimer’s advocate. “I’m a lifer,” she said.

Fisher cared for her husband, Jim, at home for five years, then in a nursing home for another five years. He died in 2005.

Fisher has served six years on the Mid-Missouri chapter of the Alzheimer’s Association board of directors and coordinated the first Sedalia Memory Walk in 1998. She continued as coordinator for five years.

Her work doesn’t end there. Fisher will make her eighth consecutive trip to Washington, D.C., to participate in a public policy forum regarding the disease. On the last day of the trip, Fisher visits legislators and asks for more research funding. The National Institutes for Health receives $644 million a year for Alzheimer’s research, but advocates would like to see that figure reach $1 billion.

“I don’t think people realize the scope of Alzheimer’s and its effects,” Fisher said.

Linda Newkirk, executive director of the Alzheimer’s Association Mid-Missouri Chapter, said Fisher was a “natural choice” for the first award.
“Every time we have a need, or she sees a need, she just jumps right in and does it,” Newkirk said.

Fisher continues to advocate for those living with Alzheimer’s and their families. Newkirk said often people volunteer less after their loved one dies.

“It’s unusual to have the level of dedication Linda has,” she said.

Fisher said she continues to champion the cause because she knows people living with the disease and sees the impact on families.

“I think that even though he’s gone ... I just realize how important it is,” she said. “Every person can make a difference. ... It’s something within everyone’s grasp.”

The Sedalia Alzheimer’s Support Group is another place Fisher makes a difference. She continues her involvement with the group.

“I learned a lot along the way from the support group; it was one of my best resources,” she said.

Fisher said she hopes others can learn from her experiences.

“Take each day one day at a time, and still try to find things to enjoy,” she said. “Whatever they can do, whether it’s a walk in the park or going for a ride.”

Some 110,000 people in Missouri are living with Alzheimer’s. Fisher has collected and edited 37 stories, including several of her own, in a book, “Alzheimer’s Anthology of Unconditional Love.” She said the stories describe the impact of the disease on families, which is often given little attention.

“The impact on the family is an emotional impact of losing someone you love pieces at a time,” Fisher said. “You have to learn to accept them and that point in time they’re in, and not look back too much or look forward too much.”

Fisher said it was difficult seeing her husband lose the ability to do things he enjoyed the most, such as playing his guitar and reading. She and Jim had enjoyed many conversations and when he lost his speech, “that was one of the things I really missed,” Fisher said.

Fisher has another book in the works, this time with a focus on early onset, which includes those who have symptoms before age 65.
Aside from being an Alzheimer’s advocate, Fisher enjoys reading, writing and traveling.

Fisher will have a book signing from 1:30 to 3:30 p.m. Sunday at Barnes and Noble in Columbia.