Navigating Family History and Memory Concerns

My beloved uncle, who was artistic, died of Alzheimer's decades ago. He suffered it at a young age. At his funeral, my cousin said, "This is not my father; we lost him years ago."

A deep-rooted family history of Alzheimer's

My mother, his sister, died at 89 from the disease, but in retrospect, I think she had it for years. She was very artistic, and we thought some of her behavior was a result of that. My father was a doctor, and I believe he was in denial about his condition. He was lost when she died, and he died a year later.

My eldest brother died 5 years ago, and his wife admitted that my artist brother, who was fanatical about his tools, left his studio in a state of chaos, and we suspect he also had the disease. This extensive family history of Alzheimer's has significantly shaped my perspective and understanding of the disease's impact.

Personal exploration and genetic insights into family history

I have conducted extensive research on the disease and volunteered for part of a trial for a new drug at Northwestern Hospital in Chicago. I desperately wanted to contribute to the research. It was discovered that I have AOE 3 and one AOE 4. I suspect the AOE 4 was from my mom and the AOE 3 from my dad, further emphasizing the genetic component of my family history.

After a year of infusions with no side effects (not known if I got the drug or a placebo), I had a violent reaction to the infusion, so I dropped out of that part of the trial, but I am still part of being tested cognitively with regular MRIs.

Balancing a creative life with emerging memory concerns

I have spent my life in the arts, teaching and performing in dance, drama, music, and writing, and in general, being as creative as the rest of my family.

I am noticing that I sometimes forget names or words periodically, which worries me, but then I am also 74, so who knows? These memory concerns are a current aspect of my life. I play a lot of word and number games, read a lot, and still choreograph.

I wish that I could have stayed with the infusions, but the side effects that I experienced after a year were severe. I am not sure if they changed something after a year, but I developed HUGE welts, rashes, etc., all over my body, which burned and itched. This went on for weeks, and for a while, I couldn't even put clothing on.

Coping with the shadow of family history

If I do have the disease, I will cope with it and pray they will have a cure so I can outlive it. Watching my mother transition from a bright, creative woman to one who was lost and scared was sad, reinforcing the profound impact of this family history.