In 1998, Linda Fisher’s husband, Jim, saw a notice in the Sedalia Democrat for a walk to benefit people with memory problems. He told her they needed to go because he was having problems remembering things.
“We got there and Jim and I were the only two people from Sedalia,” Fisher said. “There were two people from Slater, two people from the Alzheimer’s Association and a dog.”
The next year Fisher coordinated the event and it has built ever since as she and others have served as chairs for the local Walk to End Alzheimer’s. With Jim’s diagnosis of an Alzheimer’s type of dementia, Fisher became not only a caregiver but also an advocate for Alzheimer’s issues at the state and national levels. She even serves as U.S. Rep. Vicky Hartzler’s Alzheimer’s ambassador.
Jim developed his first symptoms when he was 49 years old, but it took another three years before he was actually diagnosed. He passed away in 2005. When she was caregiver for Jim, Fisher was fortunate to find the Alzheimer’s Association, which has resources to help loved ones understand the disease and know that they are not alone.
“I think the support groups are very helpful,” Fisher said. “If you don’t know where to find the resources, you’re just kind of out there in your own little world trying to understand what is going on. You really have to understand the disease and realize it is the disease that is making your person different, not just willful anger or confusion. When somebody has Alzheimer’s a lot of times they exhibit behaviors and those behaviors are common … so other people can help you come up with solutions.”
Fisher also noted an often overlooked aspect of being a caregiver: “If you know one person with Alzheimer’s, you know one person with Alzheimer’s. Everybody is different.”
Being an Alzheimer’s caregiver can be challenging, but Fisher was able to find some coping mechanisms.
“I guess I have an optimistic spirit. There were times when I would be so down because things were going wrong or Jim was acting out, and then something would go right, he would smile at me or say something funny. That was how I dealt with it – I took it a day at a time,” she said. “Sometimes I said I took it an hour at a time, maybe even a minute at a time. I tried not to think about how he was before the disease and I tried not to think about what he was going to become as the disease progressed. I just tried to stay in the moment.”
One way to advance her advocacy was launching her award-winning blog (earlyonset.blogspot.com) in 2008. Each installment is a story on her journey to help find solutions for the disease or to help people better understand it.
“I consider writing my therapy, where I can express my feelings and hopefully help someone else who is on the Alzheimer’s journey. It makes me feel like I am contributing more than I would otherwise,” Fisher said. With the help of her current husband, Harold Ream, she collects her entries each year and publishes them in book form.
What was once a gathering of six people and a dog has grown into the Walk to End Alzheimer’s, an annual fundraiser and awareness event that boasts more than 400 participants.
“It is totally amazing,” said Fisher, who was quick to credit all those who now lead the event. “The first few walks, I think I knew everybody. It is quite rewarding.”
In 2001, Fisher began making trips to Washington, D.C., to lobby for increases in Alzheimer’s research funding; that first year, advocates’ goal was $1 billion for research, but they only secured around $300 million. Over the years, Alzheimer’s Ambassadors and the Alzheimer’s Impact Movement have helped raise funding for research to more than $2 billion per year.
With this year marking her second decade of lobbying trips to D.C., Fisher recalled the frustrations of those first few years.
“We had to educate so many who knew so little,” she said. “Now they are on board, they understand (Alzheimer’s) is a public health threat due to the numbers who have it and those who will get it.”
While there is no cure yet, Fisher said reports about research advancements are sounding positive.