Friday, May 20, 2005

Lots to Say

This is going to be a long post so if you don't have a few minutes I would come back to this!

Yesterday, my son took me to a conference on Alzheimer's Education. The speaker was Joanne Koenig Coste and you have probably heard me speak about her book Learning To Speak Alzheimers. She was a terrific speaker and had some great points about Alzheimer's. If you are dealing with Alzheimers please go out and buy this book -- it is worth every penny. When I speak I usually take this book with me and end up giving it to someone at my talks -- it brings this disease down to a patient's perspective and I obviously can't say enough about it.

Yesterday, I also recieved word from the Social Security office telling me that I wasn't disabled. Tell that to my brain! They basically said that I need to get myself back to work -- which I guess we will appeal in time. How can it be that three doctors have said I can't work and I take a test from a grad student at UGA and it is deemed that I can work. That's our government at its best.

I haven't written about this experience or really mentioned it to many people but my son thought I should write about it since this journal is really for that purpose. It has often been said that Alzheimer's is a lonely disease -- and it is kind of hard to explain that. And, I have said that you certainly know who your friends are as many drop you like a hot potato when they find out that you have Alzheimer's. The phone stops ringing and many write you off. When people find out about it they literally stop talking to you as if you are stupid and can't understand what they are saying. They don't realize that you still have feelings. I say this only to preface an incident that occured a couple of weeks ago. I attended a luncheon that was honoring a friend of mine. I didn't know any of the women sitting at my table, but I did know several others that were at the luncheon. They came up and spoke to me and we chatted for awhile. Those at the table were good at making small talk since none of us really knew each other. Then, a person seated nearby made a comment that she knew who I was -- I was that lady that had to stop working because of Alzheimer's. I replied that "yes, I was". At that moment, everyone at the table and near me stopped talking to me -- it was as if I disappeared in a puff of smoke. It made me so mad. Luckily the program started shortly after that and it diverted my attention......if someone said I had cancer or heart disease, I doubt they would have stopped talking to me -- it's a shame really. Now you can understand why my real friends are important to me -- you know who you are and thank you for standing by me!

On a lighter note, I haven't really mentioned much about my trip to Illinois to see my brothers and friends. It was a great trip -- I realize how I can't really travel by myself anymore though so it was great to have Alan along with me. We always laugh alot when we are together and that is so refreshing. My world is a lot smaller now and having those around me that can laugh with me is a joy. I got to catch up with an old friend of mine that used to be a client. We don't see each other often enough, but he is a great guy and has been a friend for 30 years. Lunch once a year doesn't seem like enough but we do stay in contact with each other and it is so nice that he still cares about me and I care so much about him. We have been great friends over the years. Thanks Dave!

My friends Pody and Rick and their daughter Rachel have been friends for just about as long. We always have a great time together -- Pody actually cooked a meal for us and for Pody that is saying a lot -- her claim to fame is that she can't make jello so her cooking always brings us a chuckle! But the lunch was great and I think after all these years she has finally learned to cook -- just kidding Pody. Their daughter Rachel is an attorney in downtown Chicago and she and Alan had a lot to talk about. We enjoy their company -- I wish we lived closer but they have been great to keep in touch with us.

My family is growing with great neices and nephews. It's fun to be around the little ones and see their moms with the children. Thankfully, the weather was nice for a great big family picnic and the children got to play outside. I'm not sure with all the noise they make that I could have taken having them all in the house with us -- but they seem to be doing well and I wish I could see them more often --they grow up fast.

I've probably written enough for this post. Sorry it was so long, but I thought while I was on a roll I would keep going!

Wednesday, May 18, 2005

The past week

My son and I just returned from seeing my family in Illinois. It is always a lot of fun and we laugh a lot. I needed that. I sometimes get the "giggles" and can't stop laughing. When my son starts to laugh that way it is really hard. We had a great time, but as usual, it is always nice to get home too. The trips take a lot more out of me now, because I tire so easily. And, of course, my routine gets shot to hell so that doesn't make it easier. But time with my family and friends is important and I need to do it when I can.

Tomorrow my son and I are going to Greenville SC to an Alzheimer's meeting. The lady that wrote the book "Learning to Speak Alzheimer's" is one of the speakers and her book is great -- I would recommend it to anyone dealing with this disease.

I have lots more to post but it will have to wait until another time.

Wednesday, May 11, 2005

Another busy week

I finally got caught up with rest and then tomorrow my son and I are going to Illinois to see my family. It has been a long time since we last visited. I can't even remember -- but it will be nice to catchup with all my family and my friends that still live in the area.

When we return Alan and I are going to Greenville SC to an educational conference on Alzheimer's. The lady that wrote the book "Learning to Speak Alzheimer's" is the featured speaker. Her book is great and I look forward to meeting her.

I know our trip will be tiring. It is harder for me to travel because I get worn out so quickly. Luckily my family knows this and allows "rest time" for me. But I am anxious to see everyone.

More when I return next week.

Friday, May 06, 2005

A big Weekend

My son graduates with his Masters in Public Policy tomorrow from Georgia Tech. What a nice Mother's Day present! I'm so proud of him. I'm glad he'll be home for a few months so I can spend some time with him. Yes, he'll be working a few days a week, but every summer he has not only worked but been taking classes or doing research. This will be the only summer for a few more years that he will just be working. Hopefully, we can go to those baseball games, play golf, tennis or just hang out. By the time August rolls around he will be ready to leave for the West Coast and start a new chapter in his life.

Happy Mother's Day to all those wonderful moms out there!

Wednesday, May 04, 2005

Washington DC

My husband and I just returned from a Public Policy Forum on Alzheimer's in Washington DC. I was so glad to see so many people with Early On Set Alzheimer's there -- it is nice to know that you are not alone. I think we all know it, but it is nice to actually see and talk to others that have this awful disease.

The Alzheimer's Association asked me to speak at a forum on Early On Set and I am so happy that the National Office is looking into the ramifications of those diagnosed early. We have our own set of problems and I am glad to have been a part of it. There was a lot of energy in the room and I do hope that we can find some solutions to some of our problems. Thank you for all you are doing.

I was disappointed, however, to sit in on the research session only to find that I didn't really hear anything new on the horizon. The last policy session I went to and listen to those from the NIH and National Institute on Aging, I was impressed with all the strides that had been made. We all want that miracle drug if you will, but it is a long way away.

The conference took a lot out of me. I've been home for a day now and just found the words to sit down and right something in this blog. I get tired so easily and it is just harder for me to try to be attentive for three days! I did manage a nap or two while I was there, but it is extremely exhausting to me -- takes me too long to recover!

Thanks to all those I met in Washington for all you do and in helping our cause. The conference was certainly filled with compassionate people and we need to keep the fight going.