Today's blog is about the documentary in which Sid and I have agreed to participate. I invite you to log onto the home page - www.thealzheimerspouse.com- and read it.
I would like to hear from those of you who have participated in such a project, those of you who know others who have, and those of you who just have an opinion.
Of those of you who had videos or news stories written about your situation, did you think it was worthwhile? Do you regret doing it?
Hi Joan, As I said before Chuck & I were in the NY Times Rarest Gene video. Plus Chuck has done a number of newspaper interviews. You linked to the Washington Post interview. Plus Chuck was interviewed by Good Morning America, PBS and by National Public Radio. Invanhoe.com will be interviewing Chuck in the next few week. We also will be in an HBO special next March. So as you can tell, Chuck is a very vocal advocate.
Joan, Chuck is a "personable, articulate, has alot of insight into his disease, is open, can talk about it without being very angry and has a compelling story." (A journalist told me this is why it was great to interview Chuck.) Chuck was on the first Alzheimer Association Advisory Board. So some of the interviews were set up by the Alz Association. Chuck went to the DC Convention the last 3 years. He met Senator Gordon Smith when they went to the hill. Smith asked that Chuck testify. So the GMA & some of the articles were a result of that. I don't know if the video is still on the ABC site. Here are a couple of articles. http://blogs.abcnews.com/politicsasusual/2008/05/the-family-dise.html http://abcnews.go.com/Health/story?id=4853142&page=1
He was asked to participate in a couple Townhall Alzheimer meetings,the Alz convention in Colorado and the first convention hosted by people with Alz in LA. There he was interviewed by PBS and met a director from HBO. Somewhere along the line, NPR interviewed him. Here is the NPR link. http://www.npr.org/templates/story/story.php?storyId=16748176. I think they also gave Chuck an audio copy.
Chuck has contacted our local newspaper a few times for interviews. He called the local University and asked if the nursing program would like him to speak. So he has spoken to a couple classes. He facilitates an early stage Alz group and speaks at local Senior, Alz Assoc. programs. Last weekend I drove him to a Caregiver retreat and he presented a session on What it is like to live with Alzheimers.
If you would like to correspond with Chuck, I can e-mail you his phone number.