Friday, April 11, 2014

Washington DC

I just returned from Washington DC from the Alzheimer's Advocacy Forum. It was a great conference, almost 1,000 people there.......all dressed in purple. I will post some photos soon. But, this year, the conference got to me. really got to me.....it was way too much for me. By the time we got to the airport to come home I literally didn't know if I was coming or going. had a meltdown at the airport and on the plane. glad Ralph was with me, because I am not sure what I would have done if he hadn't been there.  It was a long week -- too overwhelming.  More soon.

Monday, March 24, 2014

Georgia State Plan

I have written in the past about the state of Georgia working on a state plan to address Alzheimer's.  I am happy to say that the legislature passed the plan in this last session and we should see the results of the work of the committees soon.  Thanks to all that worked on that plan and I know it will be a valuable tool moving forward.

I also wrote a few weeks ago about the "Chicken Soup for the Soul, Living with Alzheimer's and Other Dementias" a few weeks ago.  Today I received an advance copy of the book and if you are dealing with Alzheimer's in your family, I highly recommend the book.  I haven't been able to read all the 101 stories but they all deal with caregiving, coping and compassion.  You will definitely learn something from these stories.  Thanks to all who put this together. It hits book stores mid-April. You may even recognize a few of the authors of some of the articles.

Lots of new Facts and Figures

Last week, the Alzheimer's Association released their new "Facts and Figures" regarding Alzheimer's.  It is an interesting read and re-defines what Alzheimer's means to women -- here is an article from USA Today that gives a good recap of what was in the report --http://www.usatoday.com/story/news/nation/2014/03/19/alzheimers-disease-caregiving/6566179/

For the whole report, you can log onto www.alz.org.

If a few short weeks I'll be heading to Washington DC for the Annual Advocacy Forum -- talking with Senators and Representatives and their staff -- hoping to not only increase awareness for Alzheimer's but increase funding for a cure for this disease. The numbers in the report are staggering and we have to fight harder than ever to get the help we need.

Friday, March 07, 2014

We Back Pat

Over the last couple of days, I have been at the SEC women's basketball tournament.  Today, players were wearing "We Back Pat" thirsts over their jerseys in honor of Pat Summitt and her foundation to fight Alzheimer's.  I was not having a particularly good day, but several people told me they wanted We Back Kris shirts. how sweet is that. it didn't make my day go much better, but I felt loved.....thank you!

Wednesday, March 05, 2014

Too tell or not to tell ....... Part 2

A while back I posted about the internal debate I have in my head lots of times about whether to share with people that I have Alzheimer's. It isn't something that usually comes up in conversation obviously.  Many times I fear saying something because I am afraid that people will treat me differently -- which if you have been reading my blog for awhile, you will know that is usually the case.  So, more times than not, I don't say anything.

About five months ago I started playing Pickleball a few times a week.  At times, the noise got to be a little too much, so I resorted to putting my earplugs in.  Then the distraction from other people when they were not playing bothered me, so I realized that if I stay on a certain side of the court I do better -- one without as many distractions.  Is this fair? I don't know if it is or not, but because of these things I have told a few people about my disease, partly in hopes they would then realize I was not trying to cheat by being on a certain side of the net.  I have been so pleased with the people that I play with -- they only don't treat me any differently, but now watch out for me on the court and never ask me to play on the other side of the net.  I love these people -- I feel like I am really "normal" around them!

Friday, February 21, 2014

Coming to A Bookstore

near you in April

Sunday, February 02, 2014

Alzheimer's Awareness Day at The Capitol

February 13th is Alzheimer's Awareness Day at the Georgia State Capitol.  A lot of work has gone into a new state plan to address Alzheimer's in the state.  If you would like to attend, you must register and you can do so by going here: http://act.alz.org/site/PageNavigator/GA_GA_action_center.html
All the information you need about the day can be found here and I would encourage any of you that can go to take a day and support this issue.

On another note, another Advocacy Day is coming up in the state of Washington and they need your help.  I received an email from the Tacoma Alzheimer's group and to help them get a plan started they need help.  You can help by signing their petition at http://www.change.org/petitions/washington-state-house-help-protect-those-who-protected-us

Wednesday, January 29, 2014

This and That for January

A lot has been going on but I just haven't had my thoughts straight enough to jot everything down so I'm going to give it a try ---

1. Winter weather -- yes, the South was hit hard yesterday by snow and ice.  Although Athens didn't get hit hard, Atlanta did.  The snow really wasn't the issue as much as the traffic.  People were stranded in their cars for as many as 8 or 10 hours (or even longer) trying to get home yesterday.  It was a mess.  When I lived in the North I would have been somewhat prepared -- we always carried an emergency kit if you will in our trunk to sustain us for a short time, but I am not sure if it would have sustained us that long. I was thinking that now, though, I would have had a number of panic attacks and not sure how I would have handled being stranded on interstate roads for that long.   A silly think (or maybe not so silly) is that I still keep in my trunk, a duffel bag with "necessities" including water, make-up, and overnight essentials.  I know that sounds silly, but I used to travel in my job at the spur of the moment so I always had a bag packed in my trunk.  It came in handy even if I wasn't travelling.  My husband gives me a hard time, but it is my "comfort", so he just has to deal with it!

2. Drug trials -- was disappointed that two drugs that seemed to hold some promise for those of us with Alzheimer's have not been proven in recent drug trials. This is so disappointing. 

Here is an excerpt from an article published in US News and World Report: "Two experimental drugs for Alzheimer's disease have failed their clinical trials, proving unable to help patients with mild to moderate dementia, according to new studies.

Both bapineuzumab and solanezumab did not improve patients' ability to think and solve problems, according to findings published in the Jan. 23 issue of the New England Journal of Medicine.
The drugs were intended to help people with Alzheimer's by clearing the amyloid beta protein plaques that typically clog neurons in the brains of people with the degenerative illness, the researchers said.
Neither medication improved patients' ability to think. "We were disappointed there was no clear clinical benefit," said Dr. Steven Salloway, lead researcher on the bapineuzumab study. Salloway is a professor of neurology and psychiatry at the Warren Alpert Medical School of Brown University."  You can read the whole article here: http://health.usnews.com/health-news/news/articles/2014/01/22/2-alzheimers-drugs-found-ineffective-in-clinical-trials


3. On a better note -- A funding bill for the 2014 federal budged included the largest increase in funding dedicated to Alzheimer's and dementia - $122 million in funding for Alzheimer's research, education, outreach and caregiver support in history. You can read more about that news at: http://www.alz.org/news_and_events_122_mill_posposed.asp

4. On a bright and happy note -- my friend author Lisa Genova who wrote Still Alice announced yesterday the full cast of the film adaptation of Still Alice.  It was announced previously that Julianne Moore would play Alice.  Others cast include Alec Baldwin, Kristen Stewart, and Kate Bosworth.  Filming is set to start soon.  I couldn't be happier for Lisa.  Lisa lives in Cape Cod and this article appeared today in Cape Cod Today -- http://www.capecodtoday.com/article/2014/01/29/23796-hollywood-bring-chatham-authors-still-alice-silver-screen

Lisa was in Columbus Georgia this weekend, and unfortunately, I wasn't able to get to visit with her due to some other commitments.  I was sad about that, but I am so happy for her that this film is closer and closer to a reality. 

Tuesday, January 14, 2014

Brotherly visit

My brother is going to visit this week.  He is in the Southeast on business and happens to be close by.  So he'll be here a short time, but I'm glad he is coming.  He always makes me laugh and I need some of that right now.

Monday, January 06, 2014

The New Year

The New Year for me began by saying goodbye to a friend -- see post below.  It was a hard day for me.  Someone just a year older than I succumbing to Alzheimer's.  A beautiful tribute was given to him on Saturday and I am certainly proud to have known him.

I love catching up with old friends and the holidays are always a good time to do that.  I love getting everyone's Christmas photos and their Christmas letters.  I know many people don't like to read them, I do.  With social media the way it is now, we don't get all the details of what is happening with people and their families.  Thanks to all who sent me something -- I really do enjoy hearing from you.  And, thanks too, to old friends who have re-connected through Facebook or this blog. I was so happy to hear from a former (I'm not going to say old) neighbor who shared her time with us as well as her children with Alan.  How nice to be remembered.   Another friend, Dr. Mary Cail, who wrote The All Weather Friend's Guide To Alzheimer's, has revised this book and re-released it as "Alzheimer's A Crash Course for Friends and Relatives". (Note: Full disclosure -- she does have some excerpts from this blog in the book).  She was kind enough to send me a copy over the holidays and I would highly recommend this book.  If you want to know how to deal with your loved one with Alzheimer's, please get this book.  It will save you a lot of frustration and time.  Mary has achieved a great sense of balance in the book and will help you immensely.

I'm revising the bucket list and trying to shape my 2014 so I will be back shortly.