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Home: Disease Management: Caregiving: AD Experiences
AD EXPERIENCES

Updated 20 April 2011

Do you have a personal story about an encounter with the world of research, from a patient or caregiver’s perspective? Are you a physician or scientist who learned something of value from your relationship with a patient? Send us your essays (suggested length under 1,000 words) and we will regularly select one to share with our readers. Please send them to us and be sure to include your correct e-mail return address.


Perspectives
By Lisa Snyder. A quarterly newsletter written for people with dementia that addresses the concerns, reflections, and coping skills of individuals with Alzheimer's or a related memory disorder. (Vol. 16, No. 2) [.pdf]

Forgetting to be Remembered
A vignette by Amy Wallen of a dancer telling stories about her life.

View a short documentary by Robert Krupka entitled Babushka about a woman, Alexandra, who has had Alzheimer disease for over 10 years. Babushka (Grandmother) explores Alexandra's visit with her granddaughter, Valeriya, in Pennsylvania. This film has been entered into the 2010 Neuro Film Festival from the American Academy of Neurology Foundation.

Patricia—Vanishing Mother
The Hektoen International Journal of Medical Humanities just published Ellen Jantzen's photo essay, "Patricia—Vanishing Mother," chronicling her mother-in-law's decline into Alzheimer's.

Emergent Universe
An online science museum which in its first incarnation explores ideas of emergence in general, and includes as a section on renegade (amyloid) proteins with a primary focus on Alzheimer's disease. Besides the science, there are two wonderful artistic contributions: 1) a dance video that imaginatively envisions the impact of AD on a father and daughter, and 2) images of a group of young people that you can run forward in time to see which of them get AD as they age. Site sponsored by the University of California Institute for Complex Adaptive Matter. See press release.

In Alzheimer's, Memory, and Being, Speaking of Faith creator and host Krista Tippett explores questions about memory, identity, and consciousness with Alan Dienstag, a psychologist who has used support groups and a writing group in his practice with Alzheimer's patients. He's observed the early stages of Alzheimer's as a time for giving memories away, rather than losing them. Alzheimer's, Memory, and Being will air on public radio stations nationwide from Thursday, March 26, through Wednesday, April 1. You'll also be able to hear and download the program where you'll find broadcast locations and times.

Poetry Slam at SfN 2008
Read poems from the first-ever Alzheimer Social Poetry Slam. The Poetry Slam was held at the AD Social at the Society for Neuroscience 2008.

AlzPossible Initiative
An innovative "center without walls" created by the Virginia Alzheimer’s Disease and Related Disorders Commission to enable skilled individuals to share their knowledge about best practices in Alzheimer caregiving through this open forum.

A Film About Dementia, Reviewed by a Person With Dementia
By Richard Bozanich

New York Times: Self-Portraits Chronicle a Descent Into Alzheimer’s

Watching Memories Fade
By Stephen Gaudin

She Wanted Two Kisses
By Gwendolyn de Geest

The shadows of memory
By Daniel North

A Tribute to Randy Witter
By Barbara Witter

The Benefits of Early Intervention
By Kim Wolf

Three Words: A Caregiver Poem
By Marie Henderson

From My Pad to Yours
An essay by Marie Henderson

An Interview with Jenny Knauss
An interview available on the "Alzheimer's Spoken Here" web site.

Over and Under and Back from Whence you Came
An essay by Michael Verde.

It's Difficult to Think Straight...
Judy Ewens describes but five hours of her 5 ½ years as a caregiver. They weren't the first, the worst, or the last hours, but their stark intensity reminds us anew that AD is a nasty, unpredictable disease that annihilates its victims and destroys three sets of plans, hopes, and dreams: his, hers, and theirs.

The Long Goodbye
The Long Goodbye is a poignant and compelling CD by Pat Surface. A unique blend of Celtic and Eastern European sounds and rhythms, the CD is dedicated to Pat's father-in-law, Rocco Michael Passaretti, a victim of Alzheimer's disease.

A Whole New Me
An essay by Les Dennis.

If I Only Knew Then What I Know Now - Caregiving 101
An essay by Jacqueline Marcell.

Midsummer’s Nightmare at the Alamo
An excerpt from Elder Rage, or Take My Father...Please! How to Survive Caring for Aging Parents by Jacqueline Marcell.

Her Hands Bob
A poem and a painting by Elaine Alibrandi.

Dad, How Are You Feeling?
An artistic documentation of a father's life with late-onset Alzheimer's disease.

Chronicle of a Caregiver or From Supercilious to Sympathetic
An Essay by Sarah Goodwin (Six Installments)

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