Readers voted for the health bloggers who inspire them to live a stronger, healthier life as part of our annual Best Health Blog contest, and the results are in!
Linda Fisher, author of Early Onset Alzheimer’s Blog, came in third place! We are so pleased to award her $250 in prize money.
Read on to learn about Fisher’s experiences as a caregiver to her late husband, Jim, why she started writing her blog three years after his passing, and her continuing achievements as an Alzheimer’s volunteer and awareness advocate.
Alzheimer’s disease affects more than 5 million people in the U.S. alone and is the sixth leading cause of death. According to the latest estimates, 15 million people act as unpaid caregivers for people with the disease. Linda Fisher was one of those caregivers for 10 years, tending to her husband, Jim, as he succumbed to early onset Alzheimer’s starting at age 49.
Early onset is a form of the disease that affects people like Jim before they reach age 65. This is right when they feel like they’re hitting their stride, some of them just entering retirement after decades of work. Because of the particularly heavy reliance on unpaid caregiving, early onset impacts the lives of loved ones as well.
Linda Fisher didn’t write a blog while she took care of Jim. She was too busy working and volunteering, in addition to caregiving. But since starting the blog in 2008, three years after Jim’s death, she has become an integral resource for people in the Alzheimer’s community. She also serves as a fulltime Alzheimer’s volunteer in her native central Missouri.
We caught up with Fisher to learn more about her blog and volunteer efforts.
What would you say is the mission of the Early Onset Alzheimer’s Blog?
Linda Fisher: “The mission of my blog is to encourage, inform, and inspire. I know how emotionally draining and stressful it is to be a caregiver for a loved one with dementia. One of the purposes of my blog is to offer encouragement to families. Alzheimer’s can last for decades, and caregiving gets exponentially more difficult as the disease progresses. I hope to inform my readers about the disease, provide resources to help them cope, and tell them about news on the research front. Most of all, I want to inspire my readers to live life to the fullest and find moments of joy. Life is too precious to lose decades to depression and stress.”
What motivated you to start the blog?
LF: “I wanted something positive to come out of the negative. It was a way to honor Jim’s memory and to use our experiences to help others. When I started writing the blog, most people thought Alzheimer’s and other types of dementia were a normal part of aging, not a disease that could affect younger people.”
Was it difficult to be open about Jim’s condition at first? How did it feel to be writing about someone else so much?
LF: “When Jim was first diagnosed with ‘dementia of the Alzheimer’s type,’ I couldn’t even say the word ‘Alzheimer’s’ without crying. Although I thought it was important to let people know what a devastating disease he had, it took time before I opened up. When I became involved with the Alzheimer’s walk in 1999, his story brought about an awareness of the disease to our community. As an advocate, I learned that sharing Jim’s story influenced our legislators. Once I learned that his story — our story — was helpful to others, it made it easier to write about him.”
Has blogging changed your perspective on Alzheimer’s?
LF: “I did not blog until after Jim passed away, but writing the blog became a way for me to pay it forward. The personal benefit of blogging is that writing is, and always has been, my therapy. Blogging helps me think things through and gives me a more positive outlook on life. It helps me remember the good and realize that it far outweighs the bad.”
Was blogging an empowering experience?
LF: “Volunteering for the Alzheimer’s Association was an empowering experience for me. [Later,] the blog helped me share my passion. Because of the Association’s support group, caregiver training, and encouragement, I became the best caregiver I could be.”
When did you first notice that your posts were really resonating with people?
LF: “At first, I just figured I was writing this little personal blog and no one was reading it. Then one day, I received a request from a health blog to republish my posts. I began to receive emails from readers telling me that certain things I’d said on my blog had helped someone solve a problem or made them laugh when they were down.
“I never had very many followers, but the stats on my blog show several hundred people read it each day from 10 countries around the globe. After I posted ‘Getting Digital Affairs in Order,’ the blog had 2,500 views in one day. I never know what’s going to make a post pop up all over the internet. A 2012 post ‘Vietnam Veterans: PTSD and Dementia,’ has new readers weekly.”
Has the blog connected you with someone you wouldn’t have been able to approach otherwise?
LF: “I publish my blog as a book each year and give it away at the Walk to End Alzheimer’s as part of my corporate sponsorship. Through the books, my blog reaches people who do not have access to the internet. People of all ages read the books, from young children to residents in nursing homes. I often hear their personal stories when they pick up a book.
“In July 2013, I blogged about Hellen Cook, a woman with Alzheimer’s who went missing at a nearby town. When her body was found nearly a month later, I blogged about the tragic outcome and shared information about programs to help cope with wandering. I met Hellen’s family at the Alzheimer’s walk when they picked up a blog book. Since then, I have reconnected with her granddaughter, Sarah, at the Advocacy Forum in Washington, D.C., and at Memory Day at the Missouri capitol.”
What would you change about the way early onset and Alzheimer’s in general and people with the conditions are talked about?
LF: “I never refer to a person with dementia as a ‘patient.’ I believe it is important that the disease does not define the person. I have no sympathy for someone who doesn’t visit a person with dementia because they do not think the person recognizes them. Nothing is sadder than to visit a nursing home and see the lonely, forgotten people in the Alzheimer’s unit.”
There were many advances in Alzheimer’s research and treatment during the 10 years you cared for Jim and in the years since. If you could turn back the clock, what would have been most helpful to you and Jim?
LF: “Alzheimer’s has turned out to be quite a mystery. I believe one of the most promising approaches I’ve heard is a cocktail of prescription drugs, similar to how HIV/AIDS is treated. The two hallmarks of Alzheimer’s are beta-amyloid plaques and tau tangles, and it will probably take more than one drug to be effective.
“I think the most helpful thing for us would have been a definitive diagnosis during Jim’s lifetime. We did not know for sure the type of dementia Jim had until autopsy. That’s when we discovered he had a rare type of dementia called corticobasal degeneration. I wish that we had known prescription drugs could have unexpected side effects on people with dementia. Jim had some really bad experiences with anti-psychotic drugs.”
What do you think is missing in current discussions about early onset and Alzheimer’s in general?
LF: "Alzheimer’s disease is the sixth leading cause of death in the U.S., and it is the only disease in the top 10 without a cure or effective treatment. An estimated 5.2 million people age 65 and older have Alzheimer’s disease, and approximately 200,000 under the age of 65 have early onset Alzheimer’s. Without a cure, these numbers will skyrocket to around 13 million cases by mid-century.
“Alzheimer’s is the most expensive disease in America. The costs of Alzheimer’s care and services strain family budgets and put a strain on Medicare and Medicaid services. Our country needs to make Alzheimer’s a national priority and invest more in Alzheimer’s research funding. Chronic underfunding of Alzheimer’s research leaves promising research unfunded. Through advocacy efforts, funding has increased over the past few years, but research amounts for Alzheimer’s are a fraction of research investments in other major diseases.”