Thursday, December 23, 2010
Monday, December 20, 2010
Sunday, December 19, 2010
I loved Cancun -- it just wasn't the relaxing trip I was hoping for. And, I couldn't help but think that at some point in probably the not too distant future I won't remember it. So, if you look at it that way, I guess it doesn't really matter in the long run whether it was a good trip or not. But, since I have to live in the now I wish it would have been a more enjoyable trip. I'll have to pick another traveling partner next time.
Saturday, December 18, 2010
Friday, December 17, 2010
Thanks for all that called on their legislators for this to pass. The President now needs to sign off on the bill.
Saturday, December 11, 2010
Thursday, December 09, 2010
Tuesday, December 07, 2010
I have loads of things to do before this weekend. I'm starting to get anxious about it. But, I started cleaning one of my craft rooms and then one thing led to another and then I'm cleaning out more rooms. I can't stand the clutter. I have a hard enough time finding what I'm trying to find most of the time because I don't remember where I put things. So, in order to help myself I have to be pretty organized and when I'm not, I get anxious. So, I have to put off the things I need to do, in order to get organized enough to do them. I know that sounds crazy -- but that is just the way my life is.
Sunday, December 05, 2010
Thanks to Dr. Glass' class at UGA for sending such a nice card to me. They were thanking me for speaking to their class and it was such a pleasant surprise to get the card and read all their notes. I really appreciate that! I'm speaking to a pyschology class this week at UGA -- that's a new one for me so we'll see how it goes!
My sister-in-law's niece died yesterday in Illinois in an automobile accident. She was 26 and had her two boys 8 and 9 in the car with her. They are currently in the hospital but don't have life threatening injuries. What a shame -- the weather is probably to blame as it was snowing and icy. Not sure what is going to happen to the children now as their father is not in the picture. i know my sister in law was close to them and I feel so bad for the family and those children -- especially here at Christmas time. Please keep them in your prayers.
Friday, November 26, 2010
But, I'm thankful that I was able to be with them, I'm thankful for good friends, I'm thankful for everyone's patience.
Monday, November 22, 2010
Sunday, November 21, 2010
Thursday, November 18, 2010
Thursday, November 11, 2010
I miss the letter writing. I don't do very well with it these days so I hope that my cards speak for themselves. I'm old fashioned that way I guess.
Today my husband and I had lunch with a lovely couple. Both of these people had been my son's teachers in high school. While my son was on the Academic Decathlon team he spent more time with them than he did with us, but considering they went to nationals each year and he learned so much we were so glad he got the opportunity. And, what great role models they were for him. I couldn't think of two nicer people for my son to be around. They will always mean a lot to me and to our son.
In the last few days several people have asked me about my Alzheimer's and "where I'm at with that". Some people don't want to ask because they really aren't sure how to either broach the subject or they are not sure that I want to talk about it. But, I respect these people in their approach -- they have started by asking something like "would it be inappropriate for me to ask about your Alzheimer's". That is so considerate and it is nice to know they are interested. So many people act is if it is like a big elephant in the room and it is so much easier to talk about it than to have it hanging over your head.
Our Memory Walk team raised the most money in the state......or at least we did until a company in Atlanta found out about it and matched it! But, that is good, because more money was raised by them matching it! A challenge is on for next year!
Sunday, November 07, 2010
Another nice thing that happened this weekend that I was invited to Augusta to speak at the Memory Walk. They did a really nice job and had about 1,000 people there. It was a little chilly to start out with but turned out to be a beautiful day. An added bonus was my long time friend, Suzanne went with me and we were able to catch up in the car. I'll post photos when I get them. Thanks to Kathy, Dee Dee and Kimberly in the Augusta Alzheimer's Association office.
Tuesday, November 02, 2010
This weekend (so far) is looking good -- my husband is heading out of town for a few days and I cannot wait for the quiet in my house. It will give me time to rest and regroup. However, last night he told me there was a chance he wasn't going. He is hardly ever gone and I so look forward to when he leaves for a few days. I'll have to wait and see how things go.
I am looking forward also to going to Augusta this weekend. They have asked me to come and speak at their Memory Walk on Saturday morning. I haven't been there in a long time and I am anxious to see the staff down there.
Hope everyone gets out to vote today.
Monday, October 25, 2010
Sunday, October 17, 2010
appeared this morning on ABC's new program This Week this morning to talk about the Shriver report which I mentioned in my post below. If you missed it, here is the link -- just click on the Maria Shriver photo for the video. http://abcnews.go.com/thisweek Ms. Shriver's complete report will be released on Tuesday October 19th. The Shriver Report main emphasis is the role women play in Alzheimer's. I was privileged to be part of this report. If you care about Alzheimer's -- please get a copy of this, share with everyone you know. The more we discuss this, the better off we will be.
She makes some compelling arguments. The government needs to pass the legislation of the National Alzheimer's Project Act (NAPA). We are the only civilized country that does not have a plan to deal with Alzheimer's. That is sad. Urge your federal legislature to sign on to this bill. For more information on this please go to http://www.alz.org/national/documents/Alz_Project_Act_2-24-10.pdf
Thursday, October 14, 2010
There will be a series next week on ABC News about Alzheimer's and it is on the cover of Time Magazine this week. A lot of work has gone into this and you may enjoy reading it.
Here is link to the report on the Alzheimer's Association website.
Tuesday, October 12, 2010
Tuesday, September 28, 2010
Our Memory Walk is less than a month away now. So many people have put so much into it -- I'm just hoping for no rain this year. Last year was the first year we encountered rain and it was miserable.
In a few short weeks The Shriver Project will be out. It will focus on Alzheimer's disease and as it gets closer to release, I'll fill you in more about it. First Lady of California Mary Shriver is behind it and a lot of work has been put into the report. I'm anxious to see it come out.
It's finally cooled down here in the south -- no more 90 degrees day for awhile.
Tuesday, September 21, 2010
I've been out of town for a few days and haven't been able to post. Will be posting photos soon of new arrivals into our family in Illinois. Got to visit two new precious babies!
Thursday, September 09, 2010
Was in Atlanta a few days this week on Alz. business. Things are gearing up for Memory Walk -- although it is a little over a month away, there is still plenty to get done. I'm just hoping for no rain this year.
USA Today is doing a story on Alzheimer's -- think I mentioned it in a previous post -- it is due out next Thursday the 16th so be watching out for it. The writer, Mary Brophy Marcus has been working on it for some time and she has certainly done her research. Should be good.
Sunday, August 29, 2010
Lots of little incidents like that happened this week. Then, I happened across something that I shouldn't have and it bothered me. It bothered me a lot and while I can't say what it was, it has played on my mind over and over and I can't reason it out. It's like I'm obsessed with it and can't really do anything with the information. I'm not sure I could explain it to anyone even if I could, but it disturbed me and that has been bothering me.
So, I've tried not to ask for help when I don't absolutely need it. I'm frustrated, my husband gets frustrated and then we are at a standstill. I hate this.
I've also had a difficult time doing things on the computer this week. I just couldn't get things right. Several people have been kind enough to forward things to me and I wasn't sure that I could get it all down properly so I have waited. Here are a few things that have been brought to my attention.
NPR - National Public Radio -- This week a story aired from StoryCorps. To learn more about StoryCorps here is a link http://storycorps.org/initiatives/mli
It was developed several years ago for people experiencing memory loss. It is a way for families to talk with their loved one, share stories of their past and to record a legacy of their life -- among other things. I have known several people that have taken advantage of this and it is a wonderful program. This week this story aired http://storycorps.org/listen/stories/robert-patterson-and-his-wife-karen
Another story that ran on NPR was about the early testing for Alzheimer's that has been in the news lately -- I have a related post to that in my blog. Also, USA Today is working on a big story on this subject and it will be out soon. The story from this week on NPR is at this link http://www.npr.org/templates/story/story.php?storyId=129454412
And lastly, I received an email from a gentleman by the name of Norrms and he lives in England. He has younger on set Alzheimer's and he has a blog and has written a book. I will admit that I have only glanced over his site, so I can't say much about it at this point. I intend to spend some more time on it when I can concentrate a little better. But, his blog address is http://norrms.web.officelive.com/default.aspx
I have had several other people contact me this week regarding books, DVD's etc. and I will try to sort through them soon. Thanks for reading, thanks for your comments and thanks for your support.
Wednesday, August 18, 2010
Then today I went to the grocery and although I was using my debit card, I was using coupons. I didn't think the clerk rang it up correctly with my coupons. She went over it with me several times and I was holding up the line so I decided not to argue any more. I'm sure she was right but I can not explain clearly enough what I am trying to say when it comes to the coupons and money off -- it is so simple, yet so hard. I feel like such a fool. I don't know why I try -- but sometimes I get that stubborn streak in me that "I am going to figure this out one way or another" -- i usually don't and become even more frustrated. You think I would have learned by now!
Thursday, August 12, 2010
This was an interesting article to me, because eight years ago when I was going through my diagnosis, I actually had this procedure done and these exact things were looked at. My results showed that I had levels of tau and beta amyloid protein that were "consistent with a diagnosis of Alzheimer's". A genetic test was also done at the same time and it came back that "this individual possesses an ApoE genotype that indicates with high specificity that Alzheimer's disease is the cause of or a contributor to the observed dementia. We know that just because one carries this particular gene doesn't mean that you will develop Alzheimer's. Also, the absence of this gene does not rule out the diagnosis either.
We will be hearing much more about this study I'm sure. I think my neurologist had these tests done on me because I was so young at the time of diagnosis and this was one more tool she could use. Although during my whole diagnosis the words "Alzheimer's Disease" rarely came up in conversation with the doctor, it was looming in the back of my head the whole time. And, although I was bracing myself for this diagnosis, to see the lab results come back with the actual words Alzheimer's, caught me off guard. I was actually seeing some data that said it might be likely. When I received the results of my neuro-psychological exam it said the same thing, I was still a little rattled. But all of that is behind me now and we move on.
I just thought that these tests were the norm. But, I do recall talking to others with younger onset Alzheimer's and asking them if they had a spinal tap most of them said no. I guess we will see what happens with this new information.
If we can just work as hard now to find a cure.
Thanks to those that have made a donation to the Memory Walk in my behalf. It's not too late to do so, you can follow this link http://memorywalk2010.kintera.org/faf/donorReg/donorPledge.asp?ievent=335312&lis=1&kntae335312=B3061F795CDC456CB15F2442D5F61337&supId=48686180
Friday, July 30, 2010
Yesterday, we played golf but we rented a cart and didn't walk. It was still hot, but not bad when you are riding in a cart.
I've had a couple of "writing assignments" if you will for things for the Alz. Assn. lately and they have been really tough for me. Getting words out (even doing this blog) is getting harder and harder for me to do. I know what I want to say, I just can't get my thoughs collected enough to put on paper. It takes way too long to do it. Thanks to Alan and Jennifer for being my editors on one piece --- it's so frustrating to me. I think that is why I haven't been posting much, it is just too hard to get the thoughts out in an intelligent way......people already think you are stupid if you have Alzheimer's ......by reading my writing and it not making sense will add fuel to that fire!
So, thanks for reading even I don't make sense some time.
Sunday, July 18, 2010
I'm asking that you please go to this link and sign the on-line petition to support this legislation. it doesn't cost you anything but a few minutes of your time. We are hoping for 50,000 signatures and so far we are at 22,000 -- we need your help and it only takes a minute -- to make a big difference. Here's the link http://www.alz.org/research/breakthroughride/overview.asp
Tuesday, July 13, 2010
The USA Today has an article about a couple dealing with Alzheimer's disease at an early age. I had the pleasure of getting to know Marilyn and Steve several years ago when we served on an Alzheimer's committee together. They are a delightful couple and you can read about them here. http://ee.usatoday.com/SUBSCRIBERS/LandingPage/LandingPage.aspx?href=VVNBLzIwMTAvMDcvMTM.&pageno=Mzc.&entity=QXIwMzcwMQ..&view=ZW50aXR5
You are probably seeing a lot about Alzheimer's these days in the news. The annual International Conference on Alzheimer's Disease (ICAD) is being held this week. For all the news that is happening please go to http://www.alz.org/. Lots of announcements are being made this week.
Monday, July 12, 2010
I ordered my book through Borders. But, you can also order it through Amazon. If you have a loved one that is dealing with Alzheimer's or you yourself are, please take time to read the book. It might be hard to get through, but you'll be glad you did.
Monday, June 28, 2010
This spring when I went to the Political Action Summit in Washington DC one of the things we were asking our congressional representatives was to support the National Alzheimer's Project Act. This Act would fund an office being set up within the Office of Health and Human Services to be responsible for coming up with a Plan to fight Alzheimer's and an interagency Advisory Council on Alzheimer's research and Treatment. Many countries already have an office such as this to coordinate the effects of Alzheimer's disease in their respective countries. We need this to make Alzheimer's a priority instead of brushing it under the carpet.
You can help. The link below will send a director message to the Secretary of the Health and human Services agency, Kathleen Sebelius. You just need to fill in the blanks and hit your send key. Please take a moment to do this -- it will help everyone!
Monday, June 21, 2010
Thursday, June 17, 2010
Tuesday, June 01, 2010
I was watching more tennis over the weekend and did a little better with keeping up with things. A UGA woman won the national singles championship so we were happy about that.
I actually went out and hit the tennis ball with my husband last week. I haven't been playing because of my balance issues, but after watching so much I wanted to get out and hit some. We weren't able to actually play a game, but I did o.k. considering my limitations. It was nice to "feel" like I was actually playing again -- I miss it a lot.
On another note, I received notice about a new clinical study that is getting started. It is actually a continuation of one that has just completed. But, due to some extra grants, this study is going to go further. It's intent is to try to help determine changes in the brain early -- to help diagnose Alzheimer's earlier in patients. I'm going to post a link for more information. In Georgia, Emory University is a site for this trial, but according to the website they are not recruiting volunteers yet. But, there is information on this link for you to get in touch with them (and any other areas where the trial is being run). http://adcs.org/Studies/ImagineADNI.aspx or you can call the Alzheimer's Disease Education and Referral Center (ADEAR) at 1-800-438-4380. As always, I'm not endorsing this study, I'm just passing it along to those that might be interested. They are not only looking for people with early memory loss but healthy volunteers as well.
Monday, May 24, 2010
Saturday, May 22, 2010
The University of Georgia has been hosting the men's and women's national tennis championships the last few days. Action will continue for about the next week or so. I've been going to some of the matches. This year, the noise of the crowd (yes, tennis crowds can get loud) has been bothering me. The first day I forgot my ear plugs, but you can be sure I had them the following days.
One bit of class I saw yesterday was that the Virginia men's team that was playing had on patches that honored the Virginia Lacrosse player that was murdered a few weeks. What a nice touch --
The CBS Early Morning show ran a three part series on Alzheimer's this week. I couldn't copy and paste the proper address here for some reason, but if you go to www.cbsnews.com and search for Alzheimer's they will come up. Important information.
Also, I'd like to say best of luck to Kate Gordon at the Public Policy office for the Alzheimer's Association. She's leaving the office in Washington DC to work for the Institute on Aging -- she'll still be a help to us in her new capacity. Kate was a joy to work with and someone I consider a friend. She was always there for you when you needed her -- and she still will be. You'll be missed Kate!
Wednesday, May 19, 2010
That is why our fundraising efforts are so important.
Tuesday, May 18, 2010
It's frustrating for me when I can have whole conversations in my head that I want to have with someone, but I can't get the words out.
My husband has been gone for about a week. He's home today. I know I have said it before, that when he is away and I am home alone, it is so much easier on me. He knows this too so I'm not saying anything out of line. I am amazed at how much easier it is -- not from the physical things I usually do like cleaning, cooking and dishes, but mentally. I find that I can stay up longer at night because I'm not as mentally tired from having someone around all the time. And I get much more stressed when my husband is around, not sure what that is all about, but I would probably be stressed with anyone around --that isn't aimed at him! My husband doesn't talk much, but he is a pacer -- he paces all over the house during the day. I'll be in one room trying to "do my own thing" and he will come in there many many times during his pacing. Each time it interrupts what I am doing and although he says he doesn't want anything, it's still an interruption in my brain. It's amazing how these little things will get to me. And, of course, the noise is an issue -- which it gets worse and worse. I think I might have had the television set on a total of about 5 or 6 hours during the entire time he was gone. Counter that with the almost non-stop television set being on when he is home, it sure makes a difference. He is getting better about wearing earphones with the televsion set, but it is still bothersome. A friend of mine with AD, just had some custom made ear plugs made that he says blocks out all the noise except for conversations. He says he can ride in the car with his wife with the radio on and not hear the radio but he can hear her when she talks. I might look into that. We have finished converting my son's old bedroom into a "quiet room" for me and it has certainly been a great place for me to go to achieve some peach and quiet.
On another note, my friend Carol and I went to Macon last week to an Alzheimer's fundraiser with the band Diamond Rio. It was lots of fun to be away together and the concert was really nice. Thanks Carol -- for being my chaueffer and most of all my friend for all these years -- Sainthood might be up there for you too! Carol will certainly understand this.
Wednesday, May 05, 2010
Wednesday, April 21, 2010
On another sad note, some family friends had a tragedy in their family last night. Their 28 year old son (who is autistic) shot his two sisters and his mother yesterday, fatally wounding one sister who had just given birth to a baby girl a week ago. It is so tragic. Please pray for them.
Thursday, April 08, 2010
Tuesday, April 06, 2010
We had a nice Easter -- friends came over for dinner. Everyone brought something so there wasn't much for me to do.
We have already gotten summer weather here -- it has been in the high 80's the last couple of days -- suppose to be more "normal" by weeks end.
Lots of Alzheimer's stuff going on but will need to save that for another post. Just didn't realize how long it had been since I wrote something, so I wanted to at least add a few words today.
Saturday, March 13, 2010
Monday, March 08, 2010
Wednesday, March 03, 2010
I'm anxious to get to DC to see many of my Alzheimer's friends -- I "talk" to them a lot over email but it will be nice to see everyone and see how they are doing. And, the staff is so great and accommodating that it will be nice to see them as well. Our state delegation will be heading to Capitol Hill on Tuesday to see our legislators and to ask for more money for research. There is so much more to be done.
I'll try to post while I'm away.
Thursday, February 25, 2010
Tuesday, February 16, 2010
In a few weeks I'll be going to Washington DC for the Alzheimer's Action Summit Advocacy Forum. If any of you that read this blog are going, please let me know as I would love to meet you. The conference is designed for advocates across the nation to meet with their national legislators. For more information you can go to www.alz.org/summit/forum_about.asp