Face-to-Face: A Man Speaks About His Alzheimers

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!

NOTE:
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.

Life Lessons: Your Life's Purpose

For far too many years of my life, I struggled with the question "what is my purpose?", especially in regard to my worklife. I suppose my idealistic Aquarian nature led me to thinking it was important to make a difference with one's life (or maybe it was my Norwegian Lutheran upbringing, tempered by my Gramma Hannah's scolding about "not getting too big for my britches"!)

Whatever it was, I've gotten clearer about "purpose" since passing mid-life and dealing with the prospect of death getting closer (than birth). I like what Wayne Dyer has to say about purpose in his book, The Power of Intention. He says "your purpose is not as much about what you do as it is about how you feel." My own experience affirms Dyer's view:

"You'll feel most on purpose when you're giving your life away by serving others. When you're giving to others, to your planet, and to your Source, you're being purposeful. Whatever it is you choose to do, if you're motivated to be of service to others while being authentically detached from the outcome, you'll feel on purpose, regardless of how much abundance flows back to you."

Dyer goes on to suggest that you "allow yourself to be in the feeling place within you that's unconcerned with such things as vocational choices or doing the things you are destined to do. When you're in the service of others, or extend kindness beyond your own boundaries, you'll feel connected to your Source. You'll feel happy and content, knowing that your doing the right thing."

After all the "seeking" over the years, the words that best describe my life purpose today are:

"I am here to experience the beauty and wonder of life. My tasks are to love, to learn, to serve, and to pass on what I have learned in my life to future generations."

That's enough for me to feel happy and content. Whenever a mood arises (seemingly out of nowhere) or something happening "out there" disturbs my peace of mind, I remind myself of my purpose. All it takes is listening to my heart and returning my thoughts to living on purpose (while, of course, "not getting too big for my britches"!).

What are your thoughts about living your life "on purpose"?

Writing a "Dying Letter": Elizabeth Edwards Story

A touching story about Elizabeth Edwards in last Saturday's Wall Street Journal (July 21, 2007) told about her writing a "dying letter" to her three children between campaign stops in behalf of her husband John's presidential bid. She calls it a "guide to life" which she started writing prior to her cancer diagnosis.

I would call it her ethical will. In the story, Elizabeth talks about what she has written to advise to her children on church: "We raised you in the Methodist church to give you a foundation, but ultimately you need to re-examine what choice of church is right for you." She also shares that she is teaching her children an important "life lesson: when something bad happens, you don't give in."

I invite you to read the whole story about a courageous woman who continues to live her life to the fullest with incurable cancer -- doing what she thinks is right and making difficult choices -- and preparing for the end of her life by writing what she hopes and dreams for her family.

Here's a link to the article written by Monica Langley:

The Nights and Days Of Elizabeth Edwards - WSJ.com