Sunday, April 12, 2015

Since my last post

I have been doing lots of things, but not found the organizational skills to put it down in writing.

I spoke to a wonderful group out in Crawford Georgia -- the Democratic Party hosted me for a talk.  There were some great questions out of that group and I appreciate the opportunity to talk with them.

The Public Policy Forum for Alzheimer's was held in Washington DC in the last few weeks.  A lot of really good information came out of the sessions.  I wasn't able to attend this year, but if you are interested in some new statistics here is a link to the 2015 Alzheimer's Facts and Figures . What stuck out to me the most is the diagnostic rate of Alzheimer's.  In a nutshell, it says that only 45% of the patients are actually getting a diagnosis of Alzheimer's from their doctors.  We knew this, but now there is data to back it up.  This is a shame for a lot of reasons -- the biggest one to me is that for those diagnosed early, it hinders their ability to get Social Security Disability and other forms of help they so desperately need.  This, also doesn't help the stigma situation with the disease.  So much needs to be done in this area.

Last week, I met with several other people with a reporter from Atlanta Magazine.  They are doing a Health issue in July and Alzheimer's will be featured in one of the articles.  As part of our panel discussion, we were able to call my friend Lisa Genova - author of Still Alice for her take on what has happened since she first wrote the book and since the movie's release.  By the way, Lisa has a new book out this week about Huntington's Disease.  I haven't read it yet, but if it is as good as the rest of her books I will be recommending it.

I have had lots of comments and emails in the last few weeks from readers of the blog and I have been really slow to respond.  I promise I will try to get to everyone this week.  I appreciate all of your feedback.