Memory Walk

Memory Walk was this past Saturday and it was a beautiful day. I've posted some various photos but I don't have one of our whole team yet. I'm waiting for someone to send me that! But thanks to my whole team for coming out, raising almost $15,000 for the cause and all those that donated! I love you all!

Maria Shriver

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

Alzheimer's in the News

Many of you may have some press today about "The Shriver Report" titled "A Woman's Nation Takes on Alzheimer's". It was released today by Maria Shriver and the Alzheimer's Association. You may know that Maria's father has Alzheimer's and she has championed the cause.

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.
http://www.alz.org/shriverreport/index.html

My son came home this past weekend for my birthday. It was a quick trip -- but it was nice to have him home just the same. We went out to play golf on Sunday morning and had someone snap this photo of us at the golf course. Although Alan is not a Georgia Bulldog, he did agree to have his photo taken under the Bulldog sign.

I guess I don't realize how much I miss my son, until I see him. I guess that is the way with most parents.

I know I haven't written in awhile. I have been reading some other Alzheimer's blogs lately and when I read them, I feel so inadequate in writing this blog as they all seem to have some profound things to say. I many times, have profound thoughts (or at least I think they are) but then I can't translate them onto the page. That's frustrating.

I turned the big 55 this past weekend. When I turned 30 or 40 or even 50 it didn't bother me. Turning 35 bothered me and this one has. But, if you had asked me eight years ago when I was diagnosed with younger on-set Alzheimer's if I would be bothered by my 55th birthday, I probably would have said "I'll be lucky to be alive by then". So, I guess I shouldn't let it bother me --I'm still here!

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