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 […]

Mar 112014
"You Don't Look Like You Have Alzheimer's"

TRUTH: Alzheimer’s risks are higher among women, African-Americans and Hispanics. It is common knowledge that Alzheimer’s robs people of their ability to remember, but other truths about the disease remain unknown. This June, we are debunking harmful misconceptions that keep people from seeking a diagnosis and that reduce access to needed resources and support services. Uncover the truths and take action to help end this disease. A few weeks ago, I developed a cough. I went to […]

Feb 142014
Creating Awareness during Black History Month

During Black History Month, the Alzheimer’s Association spoke with Dr. Monica Parker, an African-American family physician, caregiver and assistant professor of medicine about her passion for providing communities with local resources. The theme throughout all of her research and work in the field is simple: Education. Board certified since 1990, Dr. Parker has practiced primary care and geriatric medicine in rural Georgia and urban Atlanta. Since 1995, she has been practicing with Emory Healthcare, often […]

Jan 222014
Making Plans for the Future After an Alzheimer's Diagnosis

Two years ago, at the age of 69, I was diagnosed with Alzheimer’s disease. Shortly after receiving the diagnosis, I began to think a lot about the future. The more I thought about the future, the more I realized that I needed to implement plans for the inevitable progression of the disease while I had the ability to do so. This also seemed much more proactive than just sitting around worrying about having Alzheimer’s. Prior […]

Nov 142013
A Tribute to My Care Partner

Next month, Mary Margaret and I will have been together 50 years. She is a very positive gal, extremely caring and inclusive with her friends. I am not always a social animal. Mary, however, is very outgoing and makes new friends easily. These days, we are attached at the hip… but it wasn’t always this way. In 2009, I was diagnosed with Alzheimer’s. After I received the diagnosis our lives changed. At the time, Mary […]

Aug 232013
Alzheimer’s, Nana and Me

I was 9 when I saw my mom and my Da crying, and I thought my Nana must be sick.  When I asked no one would tell me anything. Then one weekend, when Nana and I were going to watch movies all night and eat popcorn, I asked her if she was sick.  She explained to me that her body was not sick, but her brain was. It was the first time I had ever […]

May 082013
A Return Trip to Washington D.C., This Time as an Alzheimer’s Advocate

Over the course of my professional career as a space scientist (from 1966 to 2002), I probably visited the Washington, D.C. area 14 or 15 times every year.  These trips averaged two or three days, visiting various government agencies involved in funding scientific research from Greenbelt, Maryland to Alexandria, Virginia and beyond.  However, the only time that I can remember that I visited the Capitol Building was as a seventh grader on a spring school […]

Apr 242013
Hope and Resolve on Capitol Hill: The Voice of an Alzheimer's Advocate

Alzheimer’s disease has been the greatest heartbreak of my life.  I lost my mother to Alzheimer’s disease. And then, my father. I tell their story, because they can’t.  I tell their story in hopes that future generations will not have the same story to tell. Today, I am surrounded by fellow advocates at the 25th annual Alzheimer’s Association Advocacy Forum – my thirteenth. We are the voice of many, with one message:  The time to […]

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