Saturday, May 31, 2008

Early Onset Project: Share Your Alzheimer's Stories

The Early Onset Book Project seeks submissions for a book devoted to young onset dementia. Many books have been written about Alzheimer’s, but Alzheimer’s Anthology of Unconditional Love: Early Onset Dementia will provide a rare opportunity to demonstrate how the disease affects families from different points of view. This book will bring to life the challenges of living with dementia and show the courage of persons with dementia and their families.

Writers do not need to be professionals. Stories written by the primary caregiver or the person with dementia are often the most compelling. I will edit stories, if necessary, before submitting them to the judges who will select approximately thirty stories for the collection.

The Early Onset Project is an exciting opportunity to educate our legislators that Alzheimer’s is a neurological brain disease and not a normal part of aging. The book will be formatted much like Alzheimer’s Anthology of Unconditional Love: The 110,000 Missourians, with slice-of-life stories, pictures of the person with dementia (if submitted), and informational articles. Missouri advocates distributed copies of Alzheimer’s Anthology of Unconditional Love: The 110,000 Missourians with Alzheimer’s to all Missouri legislators in Jefferson City and Washington, D.C.

During our legislative visits at the Alzheimer's Association Public Policy Forum, Sarah Wilson of the Mid-Missouri Chapter compared Alzheimer's to another disease that affects so many people. "When a family member has cancer, that person takes chemotherapy, and the rest of the family provides support for them. With Alzheimer's, it's like the whole family is taking chemotherapy."

Those of us who have lived with dementia understand that analogy. When my husband developed dementia at age 49, advocacy and writing helped me cope. He had aphasia and could not express his feelings, so I became his voice.

Writing our experiences has a cathartic effect and helps promote spiritual healing. Once we record the events and emotion, we realize we did our best and love makes us stronger than we ever thought we could be. I have a presentation on this subject and will publish a book, Writing as Therapy: Rocks and Pebbles, in 2008 or 2009.

Your personal stories give a voice to the 500,000 people with early onset dementia and their loved ones. No one can tell your story but you. Please share a slice-of-life moment with The Early Onset Project and let your voice be heard.

For more information about submissions for the Early Onset Project, visit, or

To download complete submissions guidelines:
The submissions deadline has been extended to October 31, 2008. If you have any questions, please email me at

Saturday, May 24, 2008

Memorial Day: Honoring America’s Heroes

While in Washington, DC, for the Alzheimer’s Association Public Policy Forum, my grandson and I visited Arlington Cemetery in Virginia. The only other time I was there was with Jim more than twenty years ago. My recent visit brought back memories of the prior visit with my husband long before we knew anything about Alzheimer’s.

With more than 250,000 gravesites on 657 acres, Jim and I did what most reasonable people would do—took the bus tour so we wouldn’t miss the highlights. As it turned out, the highlight for Jim was Audie Murphy’s grave.

We were on the last bus tour of the day so we had to quickly visit each site and board the same bus. The bus stopped for the changing of the guard at the Tomb of the Unknowns. Everyone hustled past the Memorial Amphitheatre, except Jim. I hung back to see where he was headed.

“We’re going to miss the changing of the guard,” I said.

Jim stood in front of Audie Murphy’s plain grave marker videotaping. “This is what I wanted to see more than anything,” he said.

After several minutes, we walked toward the crowd and saw part of the ceremony. This incident stands out in my memory as an example of Jim’s unique view of life. He was a person more intrigued by a simple grave marker than by a ceremony. He appreciated the grace and beauty of endless rows of marble stones

“I would like to be buried here,” he said.

“That’s not a good idea,” I argued, “because I wouldn’t be able to visit your grave.”

He smiled and put his arm around me. It was just a passing thought and not something he dwelled on.

On Memorial Day, I will travel to the Missouri Veterans Cemetery which has the grace and beauty of Arlington on a much smaller scale. At 1:00 p.m., they will have a ceremony to honor our heroes buried there.

I knew Jim well enough to know that had he seen the Missouri Veterans Cemetery, he would have preferred it to Arlington. Jim’s ashes are in a niche in a columbarium which overlooks a small lake. While the ceremony goes on, I imagine that, in spirit, Jim will be fishing in the lake and pretty much ignoring the crowd, being his own person, doing his own thing.

Sunday, May 18, 2008

Alzheimer’s Association 20th Annual Public Policy Forum

This was my eighth trip to Washington, DC, to ask for increased research funds for Alzheimer’s. It becomes frustrating when nothing seems to happen. NIH funding for Alzheimer’s research has remained flat for the past five years, and Maureen Reagan’s $1 billion goal appears to be unattainable.

It is our job as advocates to educate our legislators and remain visible. We wore our purple “beauty queen” banners which made us hard to forget. Sandra Day O’Connor and Newt Gingrich both testified at the Congressional Hearing on Alzheimer’s. One of the senators said, “This is the biggest group I have ever seen at a hearing.” The room was crowded and people stood along both walls and in the back. Mrs. O’Connor said, “This is a problem that cries out for help.” She said research was closer than ever to finding a way to dissolve the plaques which are the hallmark of Alzheimer's.

My grandson, Colby, traveled to Washington, DC, with me for his second Public Policy Forum. The Alzheimer’s Association asked us to focus on two main issues this year. We asked for $125 million increase to the $644 million spent on Alzheimer’s research, and to phase out the Social Security disability two-year wait for Medicare benefits. The two-year wait places a hardship on people with early onset dementia during the time when medical treatment is most helpful.

It is more urgent than ever to find a cure for Alzheimer’s as the baby boomers age. “A cure can save Medicare and Medicaid $60 billion a year,” Colby told his parents on the ride home from the airport. “I learned a lot,” he said. And he did. He learned that 500,000 Americans have developed Alzheimer’s before age 65 and more than 5 million people in the United States have Alzheimer’s.

“Why do you stay involved?” is a question I hear frequently. Alicia, who has early onset Alzheimer’s told our representative's legislative aide, “Linda doesn’t have to do what she does since her husband passed away.”

I don’t have any choice but to remain involved. Advocacy didn’t end when Jim died! Through my involvement with advocacy, I’ve become friends with many people who have early onset dementia, and I care about them and their health. I worry about what the future holds for Alicia, Charley, Tracy, Karen, Bill, David, Lynne and many others. I ache for the caregivers because I know how emotionally and physically challenging their journey will be. I grieve for the man whose wife held his hand and led him from session to session at the Public Policy Forum; the lost look in his eyes haunts me and revives memories of Jim.

Alzheimer’s is a disease, not a normal part of aging. We need to advocate for a cure and for programs to help those living with dementia. It is time we have Alzheimer’s survivors to honor at our Memory Walks!

Thursday, May 15, 2008

Saturday, May 3, 2008

Mushrooms in the Ozarks

Those of us living in the Show Me state tend to get excited about tangible things, which most definitely include morel mushrooms. Due to the heavy rain this year, morels are being found in record numbers. My sister-in-law has been combing the woods and shared her abundant supply with me.

I grew up in the heart of the Ozarks where mushroom hunting should qualify as a sport. During my years of hunting, I’ve been chased by bulls, came within a hairs’ breath of stepping on a copperhead, came eyeball-to-eyeball with a snake hanging out of a tree, jumped creeks, balanced on a log to cross a ravine, slid down embankments—just to mention a smattering of the dangers involved. Rather than suffering from post traumatic stress disorder because of my innumerable misadventures, I think of mushroom hunting with fondness.

At mushroom time, the woods come alive. Dogwood, redbud, and wildflowers burst into bloom. Mayflowers open their umbrellas, birds chirp, twitter, whistle and squawk, squirrels chatter and dance precariously on limbs, the scent of wild onions and garlic fill the air. There’s something refreshing about carrying a walking stick and pushing aside nature’s ground cover to find a perfect morel poking up through the leaves.

It is best to hunt with a partner so that when you wander into dangerous situations, someone has your back. I was always confident hunting with Jim and knew he would see that nothing would harm me. I remember one year Jim found a patch of mushrooms and didn’t pick any of them. He led me to them and let me “find” them. If you aren’t a mushroom hunter, you don’t realize how symbolic that is of true love.

You notice I didn’t say anything about hunting mushrooms this year. For all my fond memories, I haven’t braved the snakes and ticks to find those little darlings. It’s something I long to do, but haven’t been motivated to do. In life, we constantly balance memories against reality. The sun is shining today, and we had more rain yesterday. Wait—is that the siren song of a great spring mushroom hunting day I hear outside my patio doors?