Feb 6, 2011

"Alzheimer's ... no survivors. Not a single one"

Today, nearly seven years after disability retirement due to Alzheimer's and over five years since diagnosis, I'm still living with it, and have come to think of myself as a survivor -- Jay Smith.
Alzheimer's ... no survivors. Not a single one
Jay Smith
"Alzheimer's is a tragic epidemic that has no survivors. Not a single one," said Harry Johns, President and CEO of the Alzheimer's Association.
When I first read those words by Harry Johns', I shuttered. This is the message the Alzheimer's Association decided to lead with in a press release describing a new report -- Generation Alzheimer's: the defining disease of the baby boomers.

The report is free. All you need to provide is your name, email address, and zip code to get it.

The following is an email written in response to Harry Johns quote, and Mary Kay Baum's reaction to the report. You can read Mary Kay's response here -- Generation Alzheimer's Hope or Hopelessness ?

The following email was written by Jay Smith to Mary Kate Wilson and in response to Mary Kaye Baum's series of emails on this issue.

Ms Wilson is the Senior Director of Constituent Marketing at the Alzheimer's Association.

By Wantland J. (Jay) Smith

Dear Kate,

Mary Kay Baum's persistence in clarifying her position regarding the remarks of your CEO Harry Johns about "no survivors" inspires me to lend my personal words of support.

I am a person living with Alzheimer's, still in the "mild cognitive impairment" stage. Since getting my diagnosis of early Alzheimer's disease in 2005, I have become an advocate for early stage awareness and for support services for people with early stage Alzheimer's (including those with mild cognitive impairment).

I helped to create and also co-led the early memory loss forums for the California Southland Chapter that were held in Los Angeles in October 2007 and March 2009. My work with the chapter on those conferences led me to participate in two public policy forums in Washington DC, to serve on the second Early Stage Advisory Group of the national Alzheimer's Association, and to become the first person with Alzheimer's appointed to the California Southland Chapter's Board of Directors, completing my two-year term last summer. I'm also participating in two early stage support groups, both at agencies outside the chapter, and am helping to create more such groups just for people living with early memory loss.

Today, nearly seven years after disability retirement due to Alzheimer's and over five years since diagnosis, I'm still living with it, and have come to think of myself as a survivor. I've put together a program of healthy diet and supplements, mental and physical exercise, and socialization and creative self-expression, based on the continuous stream of studies that have shown their benefits in preventing or slowing the onset and progression of Alzheimer's. I don't expect my program to cure me, or ultimately change my fate, but I do believe it is giving me a substantially better quality of life, and extending my useful years.

I'll continue to try to shine a new light of awareness on the needs of millions of people either already diagnosed or rapidly approaching early Alzheimer's. Those baby boomers are just eight to ten years behind me, and they are going to be getting their diagnoses with early Alzheimer's in exponentially growing numbers over the next few years. For their sake, I pray that the Association will dramatically change its course and turn its attention and resources to providing the information and support that will help people with early Alzheimer's adopt the lifestyle prevention strategies that can significantly improve their lives and slow the progression of their disease.

Your reply to Mary Kay seems intent on explaining Harry John's remarks. Rather than justify the remarks, I strongly believe it is important to change the message. There are better ways to express the urgent need for research and for finding effective treatments and ultimately a cure. The Alzheimer's Association should recognize and address the needs of those of us living with Alzheimer's as its survivors, rather than slashing hope by declaring that there are "no survivors."


Jay Smith
Wantland J. (Jay) Smith was diagnosed with early Alzheimer’s disease in late 2005, based on neuropsychological tests and FDG/PET.

Since diagnosis, he became an early stage Alzheimer’s advocate, creating the first early stage memory loss forum of the California Southland Chapter of the Alzheimer’s Association in October 2007, and led their second early memory loss forum in March 2009.

He has participated in three early stage support groups, including the one he instigated and currently co-facilitates Leeza’s Place.

With the Alzheimer’s Association he has attended two Public Policy Forums in Washington DC, recently served as a member of the Association’s second Early Stage Advisory Group, and was appointed as the first person with AD to serve on the board of directors of the California Southland Chapter, completing his two-year term in the summer of 2010.

He frequently shares his story as a panelist and through press interviews.

Original content Wantland J. (Jay) Smith, the Alzheimer's Reading Room