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

1 comment:

Gordon said...

Great blog, Linda! I was diagnosed with early onset AD two years ago and started my own blog. The uncertainty of this awful disease and not knowing how long I'll be able to enjoy my life has left me with an additional problem besides the alzheimer's: anxiety.

When I went to visit my neurologist on May 1 of this year he discontinued the aricept and started me on the Exelon patch. He also told me that my disease has progressed and to stop working and apply for disability. I'm fearful of doing this. I have a house note, car payment and all the bills everybody else has. So I still go to my job every day and hope I don't make a terrible goof up.

If I think of anything you could possibly use for your book I'll think of something.