Back Again

I'm back from another trip to Illinois where I was visiting my ailing brother Bill. He just can't seem to catch a break. We received some more disheartening news of his condition while I was there.

My other brother, Tom, and I went to dinner with Bill's children, Elizabeth and Jonathan. They are in their late 20's early 30's and have families of their own. As I am, we are all struggling with the problems Bill is facing. They want answers and so do I. Unfortunately the answers are somewhat elusive. I feel bad in that Tom and I are the "adults" if you will in this situation and we are not able to help Elizabeth and Jonathan with the answers they need. I feel so helpless. I feel like I should be able to provide the support they need and I can't. I've never really felt like the "grown up" giving out advice. But, they were looking for it and I couldn't help. No one can -- and that is the difficult part.

As I look at the situation, I realize that in my own life people feel helpless because they can't help me either. But, I'm not looking for help in terms of what people can do for me. I just need people to be around me for friendship and companionship -- not to forget about me because I'm sick. There will be days when my family needs help and I hope my firends are there to help them when the time comes. I feel bad that I am going to be a burden on people and hope that it isn't too bad. I feel as inadequate about that as I do about not being able to help my neice and nephew find the answers they need.

This and that

This goose along with another goose made it to our house today. We have had so much rain in the last week or so that in the background you can see the water standing in our front yard. I don't know if these geese made a detour on their trip up north or what but they were certainly looking for food. We feed the crows, the squirrels, other cats and whatever comes our way in the back of our house. We usually feed them cat food -- I know it sounds weird but they eat it. The geese didn't seem to care that much for it. But they were lovely to watch before they flew away.

Today I went to a funeral. The father of a man I used to work for passed away. The service was lovely. He was loved my many and it showed. Life is just too short.

Friday Night Lights is a show that airs on Friday nights about high school football in Texas. Last week while I was speaking at the Alzheimer's Conference there I had the pleasure of meeting one of the character's grandfather. His grandson, Jesse Plemmons, is a Champion for the Alzheimer's Association. Jesse's grandmother had Alzheiemer's. Coincidentally, in the show there is a story line that involves another character on the show with his grandmother who has Alzheimer's. Although it is not clearly stated that that is her condition, it is understood to be -- at least by me. Anyway, the show has been dealing with this story line in a very dignified manner. But last week it struck a chord with me. I could see myself in the character and it is scary. Just as I saw myself in the Still Alice book. You can talk about this disease a lot, but when you see yourself, it is scary and becomes even more real. It's hard to explain, but it is also hard to watch.

HBO is coming out with a series beginning in May about Alzheimer's. They have been working on this for about two years. I have been to several conferences where they were shooting. I believe it starts May 10th and it is a four part series. It will be good I'm sure as they have put a lot of time and effort into it. I'm not sure if it is something I can watch either -- I know I'll tape it and watch it over time, but I'm not sure if I can watch it all at once.

Terry Moran, one of the hosts of ABC's Nightline program just did a short series on Alzheimer's. He has Alzheimer's in his family and he goes the through the process in his piece about getting his DNA tested to see what his chances of getting Alzheimer's are. Here is a link to the piece http://abcnews.go.com/Video/playerIndex?id=7175910. He also interviews Meryl Cromer, a member of Newt Gingrich's Alzheimer's Study Group (ASG). I had the pleasure of working with Meryl on a prelude committee to the ASG about a year and a half ago. She is a true crusader. And, in the piece she also finds out what her chances are for developing Alzheimer's. She now cares for her husband and mother who both suffer from the disease. Please note that the tests that they had only were indicators of developing Alzheimer's not that they would definitely get Alzheimer's. During my diagnosis I had a spinal tap which indicated that I carried one of the genese for Alzheimer's but it didn't necessarily mean that I would get Alzheimer's -- it was just one of many markers in my diagnosis. The story is interesting and I thank ABC and Mr. Moran for doing it.

I'm off to Illinois again on Saturday to visit my ailing brother. I'm hoping to find him in better spirits and in better health. I'll report when I return.

Thanks for reading and sharing your comments with me.

Thank you North Central Texas

I was the guest of the North Central Texas Alzheimer's Assn. chapter last week. I spoke at a conference they were holding and it had a great turnout. Over 400 people were registered and despite bad weather I think they all came. Shelley Bluethmann from the National Office and I were invited to be their keynote speakers. I really enjoyed my time there (although brief) and I appreciate the warm hospitality of all the Texans. Shelly Young did a great job of putting the event together and Theresa Hocker was a great hostess as well. The photo above isn't too good, but I wanted to model the cowboy hat they gave me as an "honorary Texan". Thanks for having me -- I really appreciated meeting everyone and sharing my story.

I arrived back to Athens to rainy dreary days but I was pretty exhausted so I took the opportunity to rest. More next week.

Facts and Figures

Today, news Facts and Figures were released by the Alzheimer's Association. For a link to the study go here: http://www.alz.org/news_and_events_2009_facts_figures.asp

More news will be coming out this week about the Alzheimer's study group so please watch for more on that.

On another note, my friend Josh, who I have written about was recently interviewed by NBC Nightly News. The piece aired last night. Josh is doing so much better and he looks great on the video. I'm posting two links -- one that was the piece that aired and the other was a "web only" piece. http://www.msnbc.msn.com/id/3032619/vp/29843698#29843698 http://www.msnbc.msn.com/id/3032619/vp/29842469#29842469

Check them out.

Busy Week

This weekend our UGA Women's basketball team plays in the first round of the NCAA tournament. The tournament is being held about 50 miles from home in Duluth Georgia. UGA is the actual host of the tournament even though it is not at UGA. Anyway, I am actually working the event this weekend. A friend of mine in the athletic department needed some help so I am working it . Yesterday was the first day of practice and today are the first two games. It hasn't been too bad so far -- I'm anxious for the games to begin.

Next week, I'm off to Texas where I will meet someone with the Alzheimer's Association for a meeting. We are going to be keynote speakers at an event the Texas Alzheimer's Associaton is having. So far, 400 people have signed up for the conference. I'm looking forward to it.

This weekend starts the public policy forum in Washington DC. Please be watching for lots of news out of this conference.

More when I return from Texas.

Public Policy Forum

It's not too late to register for the Public Policy Forum hosted by the Alzheimer's Association at the end of this month in Washington DC. If you register before March 13th there is a discount. Go to http://www.alz.org/publicpolicyforum/09/overview.asp for more information.

At this year's conference the Alzheimer's Study Group (ASG) will be presenting their findings from an almost two year study of the state of Alzheimer's in the United States. The ASG was originated by former House Speaker Newt Gingrich who heads the for profit organization Center for Health Transformation. The ASG is a bipartisan study and one of its members is Former Supreme Court Justice Sandra Day O'Connor. Last year she and Speaker Gingrich spoke to a senate subcommittee during the Public Policy Forum on what they were trying to accomplish. This year, the results are in and the findings will be revealed at the Public Policy Forum. I have been fortunate to be involved with a group that gave input to the ASG and I'm anxious to see how some of these ideas and thoughts we had made its way into the study. Hopefully, we will learn a lot and hopefully, some of these ideas can be implemented to not only save the government some money in dealing with Alzheimer's but also to help the families struggling with this disease. If you can't make it to the forum, please watch the news toward the end of the month because it will certainly be making headlines.

Also, at this year's forum there will be an early stage summitt which will feature Still Alice author Lisa Genova who I have written about several times. I learned this week that a friend in Atlanta who has Alzheimer's and his wife will be joining Lisa during a panel discussion.

Alzhiemer's will be in the news --there's lots going on.

Alzheimer's Day at the Georgia State Capitol

About 300 advocates emerged on Atlanta yesterday to talk to our legislators about issues dealing with Alzheimer's. It was a great day. We were all wearing purple t-shirts that said "voice" across the front. There was a press conference with the Governor which drew some press to the event. The Governor's mother-in-law was recently diagnosed with Alzheimer's so this is also a personal thing for him.

We had people come in buses from all over the state. Ralph and I went and there were a few other people from around our area there including a new friend I have made, Bill Dotson. I was deeply touched that my daughter-in-law's father, Charles Lee also showed up to be with us. I didn't know he was coming and it really meant a lot to me that he would take time out of his day to join us.

Most of the legislators we met with were receptive to what we had to say but with the budget the way it is in our state (and probably almost every other state) we will have to see what happens. One thing I have been working towards is an Alzheimer's Task Force that would look at issues such as driving assessments, emergency placement and better long term health care. This is something that will not take a lot of money but just requires some time and effort on some of our legislators part.

Thanks to Kathy Simpson and Ginny Helms of the Georgia Alzheimer's Assn. for putting this together. I look forward to next year's event.

Pick Up Sticks

Now that the snow has passed and it is 70 plus degrees outside today, it is time to go out and pick up all the limbs and branches that fell off our trees during the snow/ice storm. It did a lot of damage in Athens and we will be picking up debris for awhile.

Monday is our Advocacy Day at the Capitol in Atlanta. There will be a press conference with the Governor that I will be speaking at and hopefully we can get some people's attention on Monday.

Last week, when our power was out, I had a lady call me from Missouri. She had seen an article in a magazine about me and my struggles with Alzheimer's and she was desperate to talk to someone. Her husband, 64, has been showing signs of Alzheimer's (loss of short term memory, confusion, getting lost) and she needed to talk. She had been letting her husband do all the financial things around the house and as a result the house is in foreclosure and there are some issues she is having to deal with because these things were not tended to. One of her first questions to me was "do you have problems with math?" That seems to be a universal problem with all of us -- and I think she was relieved to know that but at the same time realized how much of a mess she was in. She couldn't talk long because she didn't want her husband hearing her talking to me. Since the power was out I couldn't look up the 800 Alzheimer's number but I told her how to get it and I hope she will call. She asked if she could call me again and of course I said yes. I hope she can find some help somewhere. At least she realizes that there is a problem there.

Snow photos

The newspaper said we got 6.5 inches of snow. The most Athens has ever had was 8 inches and that was in 1983. We remember that one too but this snow was so wet and heavy that it did a lot more damage. In the last photo I decided to take my black cat out to play in the snow with me. She didn't like it much! We didn't make the snow creatures -- someone else on our block did.

I was starting to get a little panicky after about 24 hours without power. Not from being without power but just not having things be normal.

Over the weekend, I was in Macon for the Georgia Sports Hall of Fame induction. Our UGA women's basketball coach was being inducted. While there I met with the Macon Alzheimer's Development Director and got to meet a lovely couple they serve. Cheryl and Norman met us for breakfast. Their daughter has been active with their association as well since her father was first diagnosed. They were a lovely couple and I hope I get to see them again next week at our state Advocacy Day in Atlanta.

Snow

Well, we got hit with some pretty big snow this past weekend. It was beautiful and I'm going to post some photos later -- I know you Northerners will be used to it. (I am a transplanted one you know) -- but with it brought massive power outages. We lost our power on Sunday night about 5 p.m. and got it back 31 hours later! So, I'm just catching up to things on the internet. We were lucky that we have a gas stove and at least we could heat water and cook some things. We took hot water to our neighbors so they could at least have soup and coffee.

By Friday it is suppose to be 70 degrees here. Go figure. More soon.