Young Onset Alzheimer's Disease: Fighting in Mike's Memory
This past week, my daughter Courtney and I attended the Alzheimer’s Association Public Policy Forum in Washington DC. My son Brandon wanted to go with us, but with Mike’s passing, the stomach virus, and the flu, he had missed too many classes.
The trip was emotional from the beginning. The last time we attended was two years ago and Mike was still with us.
Our goal is always to advocate and raise awareness - not only for funding and research - but also for Young Onset Alzheimer’s. Younger people with this disease are consistently forgotten, but I have vowed to change that.
As much as we were excited about attending, we were equally anxious. Mike’s passing was still fresh and I knew it would be an emotional journey. Before Mike passed, we weren’t sure we would be able to go, as his health was fragile and I didn’t want to leave him. A week or so after he passed, we decided we would go in Mike’s memory, and fight even harder.
Monday evening's candle lighting ceremony, which usually takes place on the steps of the Lincoln Memorial, was moved inside due to inclement weather. Looking out at the sea of lights and listening to the performer sing “Imagine” was almost too much for me to bear.
Getting upset didn’t embarrass me because I knew that each and every person in that room could feel my pain. Almost all who become advocates have done so because they have been personally touched by this disease, or because they have the disease themselves.
Once you have experienced Alzheimer’s, there is an unmistakable bond that forms with others who have traveled the same road. If someone had seen my tears, they would have understood. “Imagining” what our life would have been like had Alzheimer’s not invited itself in is always emotional for me. Mike deserved more, my children deserved more, I deserved more.
The second day of the conference consisted mostly of “break out” sessions where we were instructed on what to ask of our Representatives and how to best reach out to them. Our group from New York didn’t have to work too hard because our Senators and Congressmen/women are all on board with our requests. Listening to other advocates talk as they explain how they are constantly dismissed by their Representatives and told they cannot support these bills made us angry.
At one of these sessions, we listened to former Senator Dennis Moore from Kansas. He had been one of those Senators who our advocates went to for help. He spoke about his recent diagnosis and what it meant to him and his family.
No one is safe. Alzheimer’s does not discriminate and we see proof of that over and over again. It was also at one of these sessions that I met my new friends Matt and Elizabeth from California. Putting faces to people I’ve only known through e-mail is always a pleasure.
The second night was capped off by a dinner and this year we were told over 950 people attended. Meredith Vieira, Jane Seymour, Pat Summitt and Maria Shriver were all in attendance. What an honor it was to see these people take time out of their lives to participate in this conference.
Legendary Tennessee women’s basketball coach Pat Summitt and her son Tyler inspired all in attendance when she received the Sargent and Eunice Shriver Profiles in Dignity Award, presented to her by Maria Shriver.
Another emotional moment for me was when I saw Jane Seymour. Mike was in love with her and she was his crush. When most young men had crushes on Farrah Fawcett, Mike loved Jane Seymour. There was always friendly teasing throughout our married life about this. When I saw her, I felt that Mike was with me, smiling down from above.
I was also able to stop by Maria Shriver’s table and talk to her personally and thank her for all that she has done to help our cause, for her genuine concern for all who are dealing with, or have this disease, and for reaching out to me after my husband’s passing. She was correct that night when she told me that it’s often the small things that make a difference.
The last day was by far the hardest. We started out at the Capitol buildings at 8:00 a.m. and our meetings ended at 3:00 p.m. with six scheduled appointments throughout the day. I told our story over and over again. I kept it together until the part where I had to tell them that Mike passed away in February. Reliving our journey is emotionally exhausting, but it is a necessary evil in getting the point across as to the horrors of this disease.
While walking around the Capital, it was quite easy to differentiate between Alzheimer's Advocates and all others. Upon leaving the hotel for our day on the hill we were each given a purple sash clearly stating Alzheimer's Association in big letters. We heard from Hill staffers that our purple sashes definitely made an impact. We were classified as the "sea of purple that descended upon the hill". It was empowering to know that we were being noticed. We also made friends with people from different parts of the Country as we walked around the capital buildings sharing our advocacy experiences.
It was a long and emotional three days. Reflecting on those three days in Washington, a few things stood out to me. Among them was just how many people wanted and needed to share their personal stories in dealing with Alzheimer's Disease.
Whether they were a caregiver or someone with the disease, they wanted their voices to be heard. This disease has such a profound affect on all those who are touched by it, and like myself, I did not want all the suffering to be in vain.
Also at one of the breakout sessions we heard some encouraging news. There are currently three drugs entering Phase III clinical trials. This is a huge step and one of the main reasons why we need money from NAPA (National Alzheimer's Project Act) apportioned. Without the funding, trials cannot go forward and with three drugs being so close to approval, time is of the essence.
This experience gives me courage to continue the fight and knowledge that there are other warriors out there not willing to give up until a cure is found.
It is empowering to do what we did, but I pray for the day that I will never have to do it again. As the caregivers, patients, and all those who have lost loved ones yelled on Tuesday night, "THE END OF ALZHEIMER'S STARTS WITH ME".
Karen Henley is a legal assistant for a real estate attorney as well as a full time caregiver to her husband. She is an advocate for Alzheimer's disease research and awareness, especially for Young Onset Alzheimer's. She lives in Westbury NY with her husband and two children. She's the author of the blog, Follow You, Follow Me: A Young Family's Journey with Young-Onset Alzheimer's Disease.