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Advocate Profiles - Linda Fisher

Linda Fisher didn’t know much about Alzheimer’s when her husband, Jim, was diagnosed with the younger-onset form of the disease at age 52, after experiencing symptoms for almost three years.

“My first reaction was, ‘Isn’t there medication for that?’” Linda recalled. “I thought Alzheimer’s was just forgetfulness and didn’t realize how devastating it was.”

She has learned a great deal about Alzheimer’s since. Jim was a talented musician who loved to camp, fish and travel before his diagnosis, and the couple was married for 35 years before Jim passed away in 2005 at 59. Linda, an office manager who lives in Sedalia, Mo., took care of Jim until he was moved into a long-term care facility; even after that, she considered herself his primary caregiver while making daily visits.

“The hardest part of caregiving was the grieving process,” Linda said. “I lost Jim one memory, one skill at a time.”

Both for herself and for the benefit of others, Linda turned her Alzheimer experience into action. She began putting her thoughts on paper (and later, the Internet), finding that writing about her life with Jim was therapeutic. She eventually put together the Alzheimer’s Anthology of Unconditional Love (proceeds of which went to the Alzheimer’s Association) and blogs weekly at earlyonset.blogspot.com.

“I kept a journal throughout Jim’s illness,” Linda said. “The journal helped me vent some of my frustrations and my feelings of helplessness. Writing became my lifeline. When I compiled the stories for Alzheimer’s Anthology of Unconditional Love, I realized that writing helped other people, too. Sharing our stories helps people beginning the journey realize that they are not alone.”

Linda received respite funds from the Association’s Mid-Missouri Chapter while Jim was living at home. To give back, she served on the chapter’s board and led local Memory Walk efforts. Linda focuses her advocacy efforts on programs that help people living with the disease and their caregivers. She is a regular at the Public Policy Forum — and just as she does with her writing, she tells her story when she travels to Washington.

“Legislators are more moved by a personal story from a constituent than by statistics,” Linda said. “Caregivers and people with Alzheimer’s can put a face to the disease. I think too many first-time advocates worry that they can’t remember the statistics or bill numbers. The important thing is tell your story as only you can.”