My husband Dan and I recently visited the nation’s capital as advocates for the Alzheimer’s Association. A trip to D.C. is usually exciting. Our son Michael lived in Washington, D.C. for nine and a half years. During that time we were there at least thirty times. He and his family live in Chicago now.
On this trip, Dan and I were in the thick of the action at the National Advocacy Forum. More than 1100 people from across the nation were in attendance. During our time at the conference at the Marriott Hotel in the Wardman Park Area., we met Wisconsin Senators Ron Johnson and Tammy Baldwin and Congressman Jim Sensenbrenner. Dan and I along with other advocates and representatives from the Alzheimer’s Association chapters in Wisconsin talked about what is needed to eliminate Alzheimer’s including research and care and support services.
At one of the banquets, I met Lisa Genova, the Author of “Still Alice.” I hugged her, thanked her and told her that I wanted to read her book. My husband does not think that I should read the book. I will give his concern some thought, because I know how depressing it might be. I know what Alzheimer’s is like. I am living with early-stage Alzheimer’s and I have many other members of my family that have been impacted too.
I have experienced the Alzheimer’s journey with my strong and light hearted Grandmother, Dorothy, her sister, my beautiful, talented, dear Mother, and her sister (my aunt) who is living with Alzheimer’s disease at Luther Manor at age 91. She is still a beautiful woman but has been silent for many years. My cousin, Lynn, (her daughter) told me that she spoke to her recently. Lynn was in shock and very excited about the development.
There is always hope. That is one of the reasons we traveled to Washington, D.C. Because we hope that someday there will be no more Alzheimer’s disease. The three day conference was interesting, exhilarating, educational, emotional and exhausting rolled into one. I participated along with other early- stage couples from Southeastern Wisconsin. We were there to support each other and listen to the many speeches. It was exhausting and exciting at the same time for a person living with Alzheimer’s.
But it was well worth it to be together with our group, in force, to learn together, speak about living with Alzheimer’s, ask questions, and listen to other speakers tell their stories.
I hope our voices were heard and that there is hope for the future – through advanced research, greater awareness and one day a cure to end this devastating disease.
(Dan and Barb Johnson take the stage at the 2015 Alzheimer’s Association Advocacy Forum in Washington, D.C.)