May 052014
 
Post-Advocacy Forum: An Advocate Reflects

In a record year for the Alzheimer’s Association Advocacy Forum, nearly 900 advocates gathered on Capitol Hill, compelling Congress to make Alzheimer’s disease a national priority. With representatives present from all 50 states, this event once again brought together those affected by Alzheimer’s and allowed them to share their stories, their passion and their personal challenges living with the disease. Chuck Warner was one of the 900 strong. From April 7-9, my wife Lisa and [...]

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"

A few weeks ago, I developed a cough. I went to the doctor, they checked everything out and sent me home. But I wasn’t getting better. I started to worry when the cough got really bad and I was having a hard time breathing. I called my son, who told me that if it didn’t get better, I should go to the emergency room. By three in the afternoon, I was still having trouble breathing, [...]

Feb 212014
 
A Caregiver's Decision to Participate in Clinical Trials

Volunteers – both with and without Alzheimer’s disease – are needed to participate in actively enrolling clinical trials about Alzheimer’s and related dementias. Recruiting and retaining trial participants is one of the greatest obstacles to developing the next generation of  treatments and possibly future cures for Alzheimer’s and other dementias. TrialMatch® is a free matching service that connects individuals with Alzheimer’s and other dementias, caregivers, healthy volunteers and physicians with current clinical studies. With a [...]

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 [...]

Jan 132014
 
A Year in Review

In this first blog of 2014, I would like to review some of the highlights from the world of Alzheimer’s disease research in 2013, as well as the new directions that we will likely be heading in 2014. Advances in Brain Imaging  Advances in brain imaging, specifically amyloid PET scans, have led the way towards earlier identification of Alzheimer’s. Their widespread use in larger studies has made it possible to visualize the presence of beta-amyloid [...]

Dec 232013
 
Missing Jim During the Most Wonderful Time of the Year

I miss Jim so much during Christmas time. I miss our discussions about what to get the kids and our families. I miss sitting next to our tree, looking at the lights and sharing quiet time together. I miss feeling excited, wondering what thoughtful present he placed under the tree. I miss singing songs, watching movies and so much more. Jim still throws out a hum (actually, lots of hums) during Christmas songs, but it [...]

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