It really hasn't changed all that much. Just the clothes and the meds are different. Thank God for the Meds! I recently traveled to Washington DC to save our Alzheimer's research dollars, but I returned with so much more.
My trip to DC was great, though time will tell how effective it was convincing Congress to continue funding Alzheimer's research. I was accompanied on the trip by my care partner, Marianne Gardner and my daughter Rachel. We flew out early so that we could see a few sights in the DC Mall. There is an old legend in our family about Great Grandpa Jackson riding with Custer in the Civil War. He was a flag bearer, and one of the few who survived the war. So I searched the Smithsonian for a flag on display that matched our family story. I found it, a flag that matched our story. Whether the story is true I don't know, but belief, and the journey is the issue, not necessarily the result. That is so true with having Alzheimer's too. It is the journey, not the result that is important.
As a representative of the Alzheimer's Association Persons with Dementia Advisory Group on Early Stage Issues, (whew that is long) we were housed in the Grand Hyatt Hotel, a beautiful place to be in DC. They fed us well and gave us great opportunity to visit with the other 300 or so advocates from all over the nation. It was exhilarating for me to see so many people involved in this political forum. I wish everyone involved in Alzheimer's advocacy in Oregon could have been with me. We sat through many training sessions on issues to raise with members of Congress, how to address them, how to make appointments with them and how to make an impact about the need for Alzheimer's research dollars to be increased and not cut. I know that our Oregon Congressional Delegation will vote for us on these issues. Senator Wyden made an effort to meet with us and hear our personal stories. Congresswoman Hooley's staff took great pains to be exceptionally helpful. But I was surprised and pleased to know first hand that all of our Congressional representatives worked to make us welcome; and hear our story. They were all happy to talk to us about the issues surrounding Alzheimer's disease and to meet me, as a person with dementia advocating for myself.
This trip for me became not only a trip for advocating Alzheimer's research, but also became a time of personal discovery. As we were sitting down to dinner at our first formal meeting, two young women came over and sat with us. They were from Utah and Idaho, sisters with a mission. Their mother had been diagnosed with early onset Alzheimer's disease (EOAD) this last fall. In their search to find out information about the disease they heard a story about another family with EOAD that they were related to. That family was mine. They were related to me through my Great Grandmothers family.
As our meetings progressed for the three days of training, more and more persons with dementia arrived. I was finding myself talking to people my own age, some younger, some older, but people with EOAD. We compared notes on drugs, symptoms and emotions dealing with the disease. Many of them told me that they came just to hear me speak on early onset Alzheimer's issues. They were thrilled that we were being acknowledged and listened too. The conference hosts found another room for us to meet in and have an impromptu break out committee on EOAD issues and then offered us a reception to be able to chat together. The night before going to the Hill we gathered in front of the Washington Monument and on the edge of the reflecting pool listening to speakers encourage us to do well. I did get to meet and shake hands with David Hyde Pierce from the television show Frasier, he is an advocate for us too. It is a marvelous thing to see folks from all over the nation gathering to change the face of Alzheimer's disease.