Apr 212014
 
Where the Truth Lies, An Excerpt from <i>Chicken Soup for the Soul: Living With Alzheimer’s & Other Dementias</i>

The greatest enemy of any one of our truths may be the rest of our truths. ~William James My father doesn’t know that my sister, Alice, is dead. He doesn’t know that she had cancer, that she suffered, or that she, in a pain-pills-slur, asked to be buried in a red dress with no shoes. My father doesn’t know that I am his daughter, Elizabeth Emily, the girl he nicknamed “E.E.” for brevity and affection. He […]

Apr 182014
 
Breaking Our Silence on Capitol Hill

When my husband Jim, who just turned 53, was first diagnosed with younger-onset Alzheimer’s disease, I wasn’t quite sure what was going on. The doctor didn’t tell us Alzheimer’s is fatal. He didn’t tell us there is no cure or that we should get our affairs in order. He didn’t tell us how long Jim might have left. He simply said, “See you back in six months.” If you are lucky, your doctor might refer […]

Apr 072014
 
Advocacy: Why It Matters

I’m in Washington, D.C. today as an Alzheimer’s advocate. Why? Three years ago my life took a very unexpected change in course. In 2011 at the age of 56, I was diagnosed with younger-onset dementia, probable frontotemporal dementia (FTD). But my journey, although altered, is by no means over. I have chosen not to let this disease isolate or silence me. After my diagnosis I found it difficult to locate services and education for people […]

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