Early Onset Dementia: Write Your Story

Did some event happen that made you realize your life was irrevocably changed? What is your story of that moment?

Each morning of my life, I have awakened with confidence that life will plug along on an even keel. Without warning, a few simple questions changed the course of my family’s lives.

Jim and I were at our local Nissan dealer to co-sign a loan for our son. The dealer, Kevin, asked Jim his social security number and after a few moments, Jim said, “I can’t remember it.” Jim knew his social security number well because it had been his service number for three years in the U.S. Army. It surpised me that Jim couldn't recall the number, but it didn't concern me because I have glitches with numbers all the time. I gave Kevin Jim’s social security number.

Then, Kevin asked Jim his birth date. Jim said, “I guess I don’t know that either.”

That was when we began our journey. A family in the United States begins that journey every 71 seconds. The Alzheimer’s Association estimates that more than 500,000 people in the U.S. have dementia that began before age 65, or early onset dementia.

For several months, I have worked on the Early Onset Project. My objective is to collect stories to create awareness of early onset dementia. I need approximately thirty-five true stories to complete the book. My plan is to have three sections: In Their Own Words (people with dementia), Care Partner Stories (for primary caregivers) and Family, Friends, and Professional’s Stories.

Although I extended the deadline to October 31, I do not have enough submissions. I know it’s hard to take time to write a story, but consider how much your slice-of-life story can benefit other people who have just begun the Alzheimer's journey.

Writing life stories is therapeutic for the author. It is amazing how committing your challenges to paper can begin emotional healing. I knew this instinctively, but research supports the beneficial effects of therapeutic writing. Dr. James Pennebaker’s studies have shown positive emotional and physical benefits for people who wrote about traumatic experiences for fifteen minutes, four to seven consecutive days. The participants were instructed to write their emotional reaction to the traumatic event without regard to grammar or spelling. This writing can be kept completely personal and never shared with anyone. Most participants found that by the end of the study period their writing had developed into a story.

Try it and you will be amazed at how easy it is to write a slice-of-life story and how cathartic the process will be. If you want to contribute the story to the Early Onset Project, email it to earlyonset(at)hotmail.com.

Watch for a publication date announcement for: Writing as Therapy: Rocks and Pebbles by L. S. Fisher.

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Writing as Therapy: Rocks and Pebbles

Stress is rampant in most of our lives today, and is a primary contributor to premature death. Even when we make an effort to be healthier, we create more stress! I experience health-related stress every time I try the latest count-every-calorie diet and go to bed with a growling stomach.

We manage stress in individual and somewhat mystical ways. Whether you cope with stress though exercise, aromatherapy, meditation, medication, therapy, or a combination, you use a method that blends with your personality.

I’ve always believed in gut feelings, and my gut tells me that writing is the technique that works for me. I will be the first to admit a bubble bath can brighten a bad day, but when I grapple with a dilemma, I need to write. The key word is “need.” It isn’t that I want to write, or writing through the problem might help; writing is necessary. Nothing else works as well as writing to relieve my stress, grief, disappointments, or the myriad of quandaries spawned by daily life.

Through Jim’s downward spiral into the land of dementia, I survived by writing. From the first memory lapses through ten years of gradually losing my best friend and companion, I wrote. Pen and paper, or my laptop, took the brunt of my anger, disappointment, and despair. Had I unloaded all my problems onto other human being, I probably wouldn’t have any friends or relatives without unlisted phone numbers.

I wrote “Writing as Therapy: Rocks and Pebbles” for Alzheimer’s Anthology of Unconditional Love. One of the purposes of the book was to help others traveling the Alzheimer’s journey. I would have been remiss had I not shared the value of writing.

Imagine my excitement to find research validates the therapeutic benefits of writing for both emotional well-being and physical problems. It is easier for me to understand the emotional benefits of writing than to comprehend that participants of therapeutic writing experiments showed decreased blood pressure, less pain from arthritis, and better breathing in asthmatics.

In this age of self-help, writing is an inexpensive way to use the benefit of self-reflection to increase our joy in living. Researchers warn that writing is not a cure-all and may not work for everyone. But if you are one who believes in gut feelings, you might want to give it a try. Writing as therapy is not about being a “writer” or “published author;” it’s about expressing your emotions through writing.

My current book project, Writing as Therapy: Rocks and Pebbles, explores how writing memories, or even fiction, can be cathartic. Writing allows me to reflect on life, examine my values, and validate my faith that my existence has meaning. Writing is a stress-free health choice that allows me to feast on spiritual food. No calorie counting required.

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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 http://www.lsfisher.com/, or www.alz.org/mid-missouri/


To download complete submissions guidelines: http://www.lsfisher.com/projectearly.html
The submissions deadline has been extended to October 31, 2008. If you have any questions, please email me at earlyonset@hotmail.com.

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