Thanks to Maureen Matthews for letting me know about the recent conference in L.A. by and for people new to their Alz. diagnosis. The LA Times article tells of two men with early on-set and in early stages, Richard Bozanich and Jay Smith, who met at an early stage support group and dreamed of holding a conference that would energize, organize, and activate people who were in the same boat.
They are part of a larger, growing group of people diagnosed with Alz (or “probable-Alz” or with Alz-like symptoms) who are speaking out. DASNI, Alzheimer’s Spoken Here, Dementia USA. The New York City Chapter of the Alz. Assoc. has an annual conference (May 2nd this year) for people in early stages and conferences and support groups have been emerging across the country in the last several years.
All these groups aim to improve the quality of life of people with dementia. The DASNI site includes a plea and an outline from Christine Bryden for the group to focus their advocacy efforts to make Dementia a global health priority. My yearning is to find a way to link existing movements together – we are not just one disease or another…
We are just at the beginning of a new way to see and understand Alz and dementia…
Anne,
I’m pleased to find your blog (courtesy of Don Moyer), and will link to it from The Tangled Neuron.
At least for me, Rich and Jay’s conference was proof that we’re moving to a more open and positive view of all kinds of memory loss.
By the way, there is one more group working to improve quality of life for people with dementia – forMemory (http://formemory.org/).
Thanks for writing about this.
Mona Johnson
The Tangled Neuron
Dear Anne,
On the same theme of people with early stage dementia speaking out, thought you might be interested in a recent STORYCORP recording featured on Morning Edition/NPR on November 30, 2007.
http://www.npr.org/templates/story/story.php?storyId=16748176&sc=emaf&sc=emaf&sc=emaf
Chuck recorded this during the LA conference. He has provided leadership and support to the early onset, early stage dementia movement. I have had a chance to listen to him on several occassions and I am always touched by his insight and courage.
Hope you are well!
Maureen Matthews