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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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, [...]
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 [...]
“In all likelihood, you have mild cognitive impairment that will eventually lead to younger-onset Alzheimer’s disease, especially with your family’s history.” With that brief pronouncement, my world, my husband’s world and our children’s world changed forever. My husband Jim was 48 when we heard those words. I was 40. Our daughter was 9 and our son was 6. I wasn’t exactly sure what it all meant. The more reading and research I did, the more depressed I became. [...]
During February, Black History Month, the Alzheimer’s Association sat down for a one-on-one talk with Dr. Goldie Byrd, an African-American scientist who has spent more than a decade researching the genetics of Alzheimer’s disease. Early in her career, Dr. Byrd recognized the impact of studying the nature of Alzheimer’s disease on a genomic level. Here are some of her thoughts on her observations and her motivations for continuing her research. “I decided to focus my [...]
To support causes near to her heart, jewelry designer Holly Freeman started a line of limited edition pieces with friend and actress Jamie-Lynn Sigler. In honor of World Alzheimer’s Month, the two philanthropists designed a purple bracelet. Proceeds go to the Alzheimer’s Association. Alzheimer’s has touched so many. I know firsthand. My grandfather was an incredibly talented artist. His works spanned from beautiful flowers and landscapes, to drawings of my favorite cartoon characters he made [...]
