Jun 202014
 
Today I Trek the Appalachian Trail to Fight Alzheimer’s

Today, I began the second half of my thru-hike of the Appalachian Trail as part of The Longest Day, an event to fight Alzheimer’s. A thru-hike is a long-distance journey from trail beginning to end. I am dedicating this hike to my mother, Debbie, who at the age of 52, was diagnosed with younger-onset Alzheimer’s. My mother is the most caring, loving, kind-hearted, independent woman who has ever graced this earth. From the moment I [...]

Jun 182014
 
Facing Alzheimer's With My Mother's Strength: Patti's Story

My mom has Alzheimer’s.  And it’s not easy. Patience is not a trait that runs in our family, and Alzheimer’s tries to take away your control. But I have learned that by educating myself about the disease and reaching out to others going through similar situations, my sisters and I can stay strong. I was born when my mom was 37 and my dad was 41.  They had already “finished” their family – my sisters [...]

Jun 172014
 
Fighting Alzheimer's From Sunrise to Sunset

In the Fall of 2010, my family and I received the worst news we had ever had—my 57-year-old mom had dementia.  It’s been four years since we received that initial diagnosis, and the reality and complexity of the disease is only getting more and more difficult to comprehend. I’ve spent the last year watching my mom’s motor skills and memory decline and it truly breaks my heart.  I can’t imagine my life without her, and [...]

Jun 142014
 
Go Big or Go Home: Advocating for Dad

Father’s Day – or any day, for that matter – is not a typical day for Jason. Jason is a teenage caregiver. While many young adults of 18 are thinking about final exams and high school graduation parties, Jason Hatke’s mind is looking much further into the future. At age 46, Jason’s father Mike was diagnosed with younger-onset Alzheimer’s disease. Jason was only 13. There were signs in the years before Jason’s father was diagnosed. [...]

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 [...]

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