This and That

My son is coming home the weekend of the 9th -- it will be a quick trip -- less than 48 hours actually, but I'm glad he's coming home. Sometimes you just need to see your kids -- it's been about 5 months since I have seen him and even though that isn't a long time in many ways, it can sometimes seem a lot longer than that. We share October birthdays and we have always tried to be together as close to those dates as possible -- sometimes it works, sometimes it doesn't. But, even if it is for just a short weekend, it will be nice to have him home.



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.

World Alzheimer's Day

Today, September 21st is World Alzheimer's Day. Give someone you know with Alzheimer's an extra hug today. The Alzheimer's Association has put out a new report that can be found here regarding Alzheimer's impact on the World. http://www.alz.org/news_and_events_world_alzheimers_day.asp#Report

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!

A Little slow

in posting I know. Have been busy -- and have a bum knee. Went to the doctor and he has me on crutches for a few weeks. After already having had a couple of knee surgeries and a broken foot, I'm used the crutches, but I still hate them. We'll see how things go.

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.

Foggy Foggy Days

This has not been a good week for me. I've been "off". It's so hard to describe but it seems like I am about five steps behind where I should be all the time. I was having an extremely hard time explaining things this week. I was trying to work on a few of my projects around the house and needed some help from my husband. Before I asked him I told him that it wasn't a good day for me and I it was going to be difficult for me to explain what I needed so he just needed to stay with me. He doesn't hear what I am saying most of the time and he caught the part that I needed help, but not the part about my having a hard time explaining what I needed. So of course, we got into a huge argument because he was mad that I couldn't explain exactly what I needed. I got upset, he was mad and it was just not good. I told him I would figure it out somehow -- I have yet to do that, but I can't go back to that scene again! It is just so frustrating to not be able to communicate efficiently. I wonder that as this disease progresses and it gets harder to actually convey anything, that will it be clear in my head and just not be able to get it out? Just not being able to communicate?



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.

Money, money, money

I've mentioned this before but it is so frustrating I could scream. Twice this week I had a problem shopping and dealing with money. Everyone knows that I can no longer make change -- and I usually give the clerk a $20 and I get my change back, or I use plastic. I've been trusting of clerks to give me the correct change, because I couldn't tell you whether they were or they weren't!!! Anyway, on Monday I went to get my hair trimmed and it was $12.00. I gave the lady a $20.00 and she gave me $8.00 back. I decided that I was going to check it -- stupid me. I kept insisting that she gave me too much money back -- I thought she should have given me $7.00 back -- so I kept giving it back to her and telling her she gave me too much money back -- she was very patient with me and tried to explain several times, counting the money back to me several times. I became frustrated and she was really patient. Then I decided that if she insisted that I gave her too much, I must be wrong. It was so confusing for me.

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!

Alzheimer's news

I'm sure many of you have heard about the new article out about using spinal fluid to use as an indicator in diagnosing Alzheimer's. If not, here is a link to the Alzheimer's Assn. page that gives their take on it. http://www.alz.org/news_and_events_statement_regarding_biomarkers.asp.

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

Lazy days of summer

Well, the heat has been unbearable here lately. And, it looks like high 90's and 100's are in the week to come. Last weekend, we went to a professional tennis tournament in Atlanta. It was 96 degrees and on the tennis court it was registering 140 degrees! We weren't that far from the court, so you can just imagine how hot we were. After 10 minutes in the stands, our clothes were soaked through. When we left our seats and came back, you couldn't sit on them they were so hot. Thank God they were wood, or we would have never been able to sit down. Ralph poured some water on the wood to try to cool it down and it actually boiled!! I know the tennis players are in a lot better shape and much younger than I but I don't know how they do it. One player did have to get an IV of fluids after his match -- I'm thinking others must have as well. The newspaper said that there were 39 people in the stands that had to have medical attention due to the heat and several were taken to the hospital over the course of the tournament.

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.

Alzheimer's Breakthrough Act/National Alzheimer's Project Act

Last March when I was in Washington at the Political Action Summit, one of the things we were asking our legislators to do was to sign on to a bill called the Alzheimer's Breakthrough Act as well as the National Alzheimer's Project Act. These bills basically asked congress to make Alzheimer's a priority and to ask for $2 billion for research. This week, A bicycle ride is taking place where riders are riding from California to Washington DC to raise awareness for the Alzheimer's Breakthough Act.

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

Thank you!!

Lots of news about Alzheimer's

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.

Jan's Story

A few weeks ago I told you all about Jan's Story. A book written by Barry Petersen, a CBS news reporter whose wife has younger on-set Alzheimer's. It's a wonderful book. It was a little hard to get through for me because it hit a little too close to home, but it is definitely worth reading. Barry shares his wife's personality so well, that you think you know her quite well all throughout the book. I know it must have been hard for him to write it. A few weeks ago this story aired on CBS Sunday morning. It's a good introduction to the book. http://www.cbsnews.com/stories/2010/06/20/sunday/main6600364.shtml?tag=mncol;lst;2

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.