Back into the swing of things

I'm not sure my life is ever "normal". But, I'm probably back to being as normal as it can be -- at least for a month or so. Alan is back in California so the house will be quieter (and less messy). I'm back to my routine and that's important. I'm still extrememly tired from our trip but I have lots of days to rest up. My husband has a nasty cold and keeps me up at night coughing, but last night I was able to go into Alan's room and sleep so I got some rest.

Alan and Jennifer's wedding is August 10th. They have just started a website www.alanandjennifer.com . They will be posting information on it as they firm up more details. They will be moving back to Atlanta the first week of July, Alan takes the bar at the end July, then the wedding, honeymoon and the move to Washington DC. So, I have about a month before things start getting a little busier.

More soon.

New Look

Yes, there is a new look to this page. I'm not quite used to it yet. My son helped me with it and I'm sure I'll make a few changes as the days and months go by. We finally made it back home today and I'm so glad to see my little house. It will take me quite awhile to rest up but I wanted to post this photo of the new bride and groom, Kathy and Jonathan Stagg. I'm so happy for them.

More soon!

Trip to Illinois

I'm still on the road -- will be back tomorrow night (Monday). It's been a long and tiring trip but I'm glad we made it. I'm glad Jennifer could come in from California, because as I said in one of m previous posts, it is probably the last time my family will be together. She got to meet a lot of people that she has only heard about and some that I haven't seen in a long time. One of my sister-in-laws is originally from England. She and my brother have been married for almost 40 years. Two of her brothers and one of her sisters came over for the wedding. One of her brothers was here 38 years ago when I was just 14 -- mind you he was only 18 at the time! I met her other brother at some point when he came visiting and I had never met her sister. So, it was certainly a special time for all of us. The wedding was great -- real laid back but everyone had fun. I'll post a few photos when I get back.

it will be nice to get back to a routine. Alan leaves to go back to San Francisco on Wednesday and then life will be a little more "normal". After jennifer and Alan move back in july it will be full steam ahead for their wedding.

It was an emotional week for me. Hard to deal with some things, hard to let go of some things. I've become much more emotional though in the last few years so it doesn't take much!!!! I lost my necklace that a dear friend gave me about ten years ago. I never took that necklace off -- i loved it so much. I had always admired other women who had something from their husbands like a necklace that they never took off. My husband never gave me anything like that. One year for my birthday a very dear friend from Illinois sent me a necklace that had a small pendant on it. It was oblong and had the word love on one side, and then the word love was spelled in Chinese on the reverse. It was very simple but beautiful and i fell in love with it when I saw it. I knew that once I put it on I wouldn't take it off. i got so many compliments on it. Then, the chain broke when I was in Peoria this week and I lost the pendant. I have no idea when or where it broke but it did and I was so sad to have that gone. It really meant a lot to me. I got very emotional over that. I know that sounds silly, but it wasn't just the necklace, it was the thought that my friend would have taken time to buy it for me - he has such good taste and he knows how much I have worn that. I'm going to hate to have to tell him.

Enough about that. I'm using Alan's keyboard and I don't like it, hence the capitalization errors in this post. I'll try to clean it up later.

More when I get home.

I'm leaving today for Illinois for my nephew's wedding. Have a lot of things to do before going so this is going to be short. I've enjoyed people's emails and notes from the Public Policy forum. I'm still digesting everything that happened and making follow up calls to legislators that I met with. I've also done a media interview since then.

A young gentleman sang at the Candlelight vigil that we had, Ken Johnson. His songs were very emotional and you can check one out here on you tube. I hope this link works!

http://www.youtube.com/watch?v=TaRexAgjWug

More when I return from the wedding. Happy Memorial Day weekend to everyone.

This and That

My husband has been gone for five days. He and my son are driving from Palo Alto to Illinois. It has been heaven to have the house to myself and the quiet. I know I have written about this before, but you have no idea how much better I do by myself in solitude. I don't have to have the distraction of the television or from my husband. I don't realize how much it affects me until I get my quiet time alone. There isn't much that can be done about it since my husband has retired and is home all the time, but I relish my quiet time alone. I have a few more days of peace.

In a couple of days I'll be flying to Illinois to meet the guys and Jennifer will fly in from California to meet us for my nephew's wedding. Adjusting to all of that will be hard after my almost week of solitude! This wedding, however, will probably be the last time that my whole family will be together. It's kind of weird to think about that. I have two brothers, one that is 13 years older than me and another that is only two years older. My oldest brother is not in good health so I don't think he will be able to travel to Alan's wedding this summer. I have a niece who is living in Nevada who will be back for the wedding in Illinois, but probably not for Alan's wedding either. So, I guess this is the time to take all the photos we can as it will probably be the last time we are all together. Growing up I thought our family was pretty "normal". But, looking back I can see that it was anything but that. Funny how your perspective changes as you get older isn't it?

On another note, a friend of mine that I used to work with called me this morning and her brother passed away yesterday at the age of 48 from a heart attack. Since I'll be gone to Illinois I will miss the services and funeral and I hate that -- I don't think I have been as good a friend to her as she has been to me, and, for that I feel bad. I have to do better by that.

More before I leave.

More Washington

Here is our Georgia delegation to the Public Policy Forum. Great photo in front of the US Capitol! At least it was sunny that day as it had been raining very hard the first three days.

More Washington DC

I was so glad to run into these folks at the public policy forum. The top photo is a friend from Missouri, Alicia. I met her about 4 or 5 years ago at the first public policy forum meeting I went to. She was so sweet and like me another early stage, early on-set Alzheimer's person. We have stayed in touch somewhat over the years but I didn't know she was coming. I love her and she has such an open heart. It was great to see her.

The second photo is Sue from Louisiana. She has a blog in http://livingwithearlyonsetalzheimers.blogspot.com/which she talks about her life with this disease. I have been reading Sue's blog for several years and it was nice to see her there.

The last photo is Diane from Nashville. She writes about her journey with Alzheimer's at http://www.knitmentia.blogspot.com/ What a wonderful treat to be able to meet her as well since I have been keeping up with her online as well.

Other people took photos with their cameras and when I get some of those from them I will post more. Alan and I met with the Georgia delegation with some of our Georgia legislatures on Capitol Hill while we were there asking for increased funding and to eliminate the two year waiting period for medicare for those under 65. We met with Congressmen Westmoreland, Deal and Senator Johnny Isaakson. We had to meet with Congressman Price's aide as he was making a speech on the house floor. All were relatively accepting of what we had to say except Congressman Westmoreland. He flat out told us that he would not support our increase for funding because he didn't think the NIH was using the money wisely. The others pledged their support for increased funding and all said they needed more information on the two year wait ban. Our meetings were interesting to say the least. The BBC was filming our meetings with Westmoreland and Isaakson so that is forever on tape. They were following me around to various meetings during the conference on a five piece series they are doing about Alzheimer's.

I have more to talk about but will finish later today.

Back from Washington

Just got back today from Washington. I promise to post more about the trip. I hope you saw all the press about the conference and Sandra Day OConnor speaking at a senate committee hearing for increased funding. The Washington Post did a great article and there is also a video from the town hall meeting.

The video is about 5 minutes long and you might enjoy seeing it. I promise to get to all the comments that have been left for me shortly.

http://www.washingtonpost.com/wp-dyn/content/article/2008/05/13/AR2008051303349.html?wpisrc=newsletter

You may have to cut and past this address into your browser.

Washington DC

I said I would blog while I was in DC and I have been a little busy. It's been raining a good bit and Alan came in on Friday. We went to the Newseum -- a new museum about the news industry. It was fabulous and we spent 4.5 hours there. I could have stayed all day. Then we went to a Washington Nationals game which wasn't so good as they lost 11-0. Then we played 18 holes of golf on Mother's day. The best part of Mother's Day was that I got to actually spend Mother's Day with my son for the first time in three years.

Now the conference has started and we had our Town hall meeting this morning. I left it early and as I write this some people from the BBC America are filming this for a piece they are doing on Alzheimer's disease. I will let you all know when it is going to air. There is a lot of press here for the conference which is great because we need the publicity. It was encouraging today that so many people stood up at the Town Hall meeting to speak. They shared information and it was a good exchange. Tonight there is a Candlelight vigil somewhere near the capitol where one of our early stage advisory group members is going to speak. It should be rather emotional. I am hoping that the rain will stop and we will have some people there.

Tomorrow we have a full day of meetings and then on Wednesday we will be going to Capitol Hill to meet with our legislators. The BBC film crew is coming to Capitol Hill with me so at least I will have our legislators attention with a film crew in tow. To many of you that have asked -- the two year wait for Medicare is also big on the agenda here and we are hoping to make some impact on that subject as well as increased funding for research. So,to all of those that have asked me to speak about that -- I am and I hope we will be able to see the fruits of our labor.

I will write more when I can.

Washington DC

Got into Washington yesterday afternoon. When I got in, the entire terminal looked different to me. I realized that I had never flown Airtran into Washington DC before -- always Delta. So, I got really confused and disoriented. I had a panic attack and then asked for some help to get my bags and a taxi. Once I got to the hotel it was fine, but needless to say I didn't venture out much on my own! I did get to have a nice rest before meeting up with colleagues for dinner.

Today we have three interviews scheduled. The weather is pretty bad -- bad storms last night and lots of rain this morning.

Alan will arrive tonight and that will certainly help me.

Off again

I'm off to Washington DC tomorrow. Two days between trips isn't quite enough for me. Plus, I'm getting a cold my son had over the weekend. When I get to DC tomorrow I think I have about one day of rest before things get busy.

BBC America is going to do a piece on Alzheimer's while I am in Washington and they will be interviewing my son and I and following us during the conference. The piece sounds promising so I'll let you know when it migh air.

While I was in California I recieved the loveliest note from someone who heard me speak in Macon a couple of weeks ago. She is a cancer survivor and has some struggles of her own. It was so nice to recieve her note and for her to take the time and trouble to contact me after the event. I look forward to getting to know her better.

Several weeks ago I mentioned that I was reading the Story of Forgetting, a new book out about Early on set Alzheimer's. I finished the book and I didn't like it all that much. It was very complicated for me to follow and it was certainly a different approach to the subject. Many books are very emotional that deal with this subject and it wasn't -- which is o.k. -- it was a little too technical at times if anything. And, there was a lot of symbolism in it and I'm not sure I caught all of it. It was a very hard read for me. My favorite book so far is Still Alice by Lisa Genova and Losing My Mind by Thomas DiBaggio. Someone left a note on my blog about the latter book and it was one of the first books I read after being diagnosed. My son had given it to me for Mother's Day the first year of my diagnosis. I'm sure others will like the Story of the Forgetting -- it just wasn't for me.

My son will be joining me in Washington DC to help me maneuver -- I don't travel so well by myself anymore. Although I just saw him last week -- it will be nice to be with him on Mother's Day. And, Happy Mother's Day to all of those mothers out there reading this.

I'm going to try to blog from the road.

Graduation

was Sunday at Stanford for Law School. Here is a family photo. I'm leaving in two days for the Public Policy forum and will try to post before leaving.