A few weeks ago, I wrote about Alzheimers patient activism in response to an article I had read in USA Today. Last week, I met one of the the men quoted in the article, Chuck Jackson. He spoke at our local Senior Professional Information Network about his experience with Early Onset Alzheimers.
Chuck was diagnosed with the disease three years ago at the age of 50. He has what he called the "familial" form of Alzheimers in which his family members have a gene associated with early onset of the disease. Chuck's mother told him about the "family disease" in 1967 (10 of 12 relatives have died from it by age 50!).
In his talk, Chuck shared his story about getting the diagnosis, his physical symptoms, his struggles in finding a support group, and his new role as a spokesman at the Alzheimers Association "Town Hall" meetings around the country. He is on the association's Advisory Board on Early Onset Alzheimers.
Chuck described the anger he experiences every time he loses some function of daily living. But he noted that he has learned to go through the grief cycle as quickly as he can to avoid becoming bitter about his losses. Too many people with little or no support get stuck in anger and bitterness when they get their diagnosis.
Chuck made a decision to tell his story to everyone who will listen in order to increase awareness and gain more research dollars to find a cure. As he said with great clarity: "I'm not going quietly to my grave like my mother did!" He wants people to know that Azheimers is not a disease of old age (an estimated 500,000 people have early onset with a projection to triple that number in years ahead).
In concluding his talk, Chuck took off his shirt to reveal a purple t-shirt with one word in bold letters across his chest. The word was: VOICE. On the back were the words "Alzheimers Association www.alz.org."
Chuck Jackson is strong, positive voice for educating people about Alzheimers. He encourages us to tell others about it, talk with our political representatives, and to contribute money for research. His concluding words stay with me today as I write: "Don't let them forget us!"
(When I spoke with Chuck after his talk, he gave me a flyer about DASNI (Dementia Advocacy & Support Network International), a non-profit group he's found very helpful. He participates in their twice-daily internet chats in a chat room that helps ease the isolation of dementia and educates participants about living with their disease.) Chuck encouraged me to "spread the word" on my blog about DASNI. Please share this information with people you know. Thanks!
A few days before hearing Chuck Jackson speak, I had planned to write about an excellent article about Alzheimers in our local newspaper. Titled "Many faces of Alzheimer's", Karen McCowan wrote about Lauren Kessler's experience working in an Alzheimers facility -- the story Kessler shares in her recent book, "Dancing with Rose". While I haven't read the book yet, the newspaper article offers an extraordinary look at Alzheimers care and the impact of the disease on individuals and their family members.