Living with Alzheimer's: 1 year
Of course, Alzheimer's is a life-changing diagnosis. It rocked my world in June 2006. After regaining equilibrium, I made a conscious decision to not put off exploring things that have been on the "to do" list for years.
The Alzheimer's Association referred to me a support group last summer, and it has been a lifesaver. We share stories about life before and after Alzheimer's, and often continue the conversation at lunch every week for hours afterward.
One of the best therapies for me has been becoming involved with the Alzheimer's Association, both with the Los Angeles chapter and the folks in the national office, as well as others in chapters in California, New York, Colorado and Minnesota. They've allowed me to become an advocate by sending me to Washington, D.C. and to Sacramento, Calif. to lobby on behalf of funding for Alzheimer's research and care.
These events have allowed me to make friends with fellow travelers from all over the United States. As a person with early stage/early onset, what drives me is working to give a voice to others with early-stage Alzheimer's. My friend Jay Smith and I are co-chairs of the first Los Angeles Early Stage Memory Loss Forum October 27. We are committed to having this be a forum by and for persons with early memory loss in that the Association has been committed to allowing us to drive the content for the event.
Because I was diagnosed at age 48, often people can't believe that someone my age can have this diagnosis. Sometimes, when I am at my best, they try to persuade me my doctors don't know what they are talking about. When I then explain my symptom, then they act as though I am helpless and should be institutionalized immediately, as if there is no middle ground. They don't realize how insidious this disease is, especially in the early stages.
While I am still able, I want to articulate and give voice to what it is like to walk in these shoes and let people know that given this diagnosis, we are capable of contributing to the world around us. Please listen to our voices – individually and collectively.