Early Onset Alzheimer’s Disease, Part 3

PART THREE: STILL ALICE

The following is an excerpt from the novel, Still Alice, by Lisa Genova.  Mrs. Genova has a degree in biopsychology from Bates College as well as a Ph.D. in neuroscience from Harvard University.  While the novel is fictional, Mrs. Genova uses her own personal background as well as research with others in the field of neuroscience, genetic counselors and persons suffering from EOAD to paint a picture of what living with EOAD may be like from the perspective of the person with the diagnosis.

 “I’m here today to talk to you as an expert in Alzheimer’s Disease.  I don’t treat patients, run clinical trials, study mutations in DNA, or counsel patients and their families.  I am an expert because, just over a year ago, I was diagnosed with early – onset Alzheimer’s Disease…..

“We, in the early stages of Alzheimer’s, are not yet utterly incompetent.  We are not without language or opinions that matter or extended periods of lucidity.  Yet we are not competent enough to be trusted with many of the demands and responsibilities of our former lives.  We feel like we are neither here nor there, like some crazy Dr. Suess character in a bizarre land.  It’s a very lonely and frustrating place to be…..

“This is now who I am, someone with dementia.  This was how I would, for a time, define myself and how others continue to define me.  But I am not what I say or what I do or what I remember.  I am fundamentally more than that.  I am a wife, mother and friend, and soon to be grandmother….

“Please not look at our scarlet A’s and write us off.   Look us in the eye, talk directly to us.  Don’t panic or take it personally if we make mistakes, because we will.  We will repeat ourselves, we will misplace things and we will get lost.  We will forget your name and what you said two minutes ago.  We will also try our hardest to compensate for and overcome our cognitive losses……….

“I encourage you to empower us, not limit us.  If someone has a spinal cord injury, if some one has lost a limb or has a functional disability from a stroke, families and professionals work hard to rehabilitate that person, to find ways to cope and manage despite these losses.  Work with us.  Help us develop tools to function around our losses in memory, language and cognition….

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