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.
Monday, July 12, 2010
Monday, June 28, 2010
Need your help
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!
http://www.kintera.org/siteapps/advocacy/ActionItem.aspx?c=mmKXLbP8E&b=6089303
Monday, June 21, 2010
CBS Sunday Morning
Yesterday, on CBS Sunday Morning, Barry Peterson did a story about his wife dealing with younger onset Alzheimer's. I can't get the link to work here, but if you go to www.cbsnews.com and click on Sunday morning and the link to "Jan's story" you will see it. It's wonderful. I've ordered his book and I'll let you know what I think if I can get through it!
Thursday, June 17, 2010
Back from DC
I've been gone awhile -- I can't believe it has been so long since I last posted -- and I said I was going to do better. We have been to DC to see Jennifer and Alan. I've posted a few photos. We did some things that we haven't done before -- we went to the Kennedy Center and saw a concert, went to Wolftrap to see a show, and we went to the Capitol Visitors Center. I've tried to go there a couple of times and didn't make it. We had a nice visit.
The first photo was taken from the old Post Office in downtown DC. We had a beautiful morning with clear skies. Then two from the Kennedy Center, Alan and Jennifer at the Eastern Market on Capitol Hill, Ralph and I at the Visitor's Center and the last photo taken on the Washington monument as we were paddle boating in the Tidal Basin. Thanks to Jennifer and Alan for their hosptality.
I did o.k on the trip. Crossing the streets in large cities is a problem for me but I always had someone with me. And, we had a harrowing experience getting to the airport in time for our flight -- 10 more minutes and we would have missed it. Then on the way back we had our planed delayed four hours. It is always something traveling these days isn't it?
We returned to hot hot weather here in the south. We played golf this morning and I don't know what I was thinking!!! I guess I wasn't -- my concentration was pretty poor and I did awful. And, it was really too hot to play......but like idiots we did.
Tuesday, June 01, 2010
I hope everyone had a good Memorial Day. Thanks to all that have served our country!
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.
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
Long weekend
As I said in my last post, the NCAA men's and women's tennis tournament is currently in Athens. I've been going every day. As someone who has played tennis all her life, I can appreciate the way these college students play since I'll never be able to play that way! It's been hot out there watching -- it was in the 90's all day yesterday. But, it is tiring sitting there for four or five hours at a stretch. Last night going on about the fourth hour of watching the tennis I realized my brain was so tired that I couldn't follow what was going on and I couldn't keep track of the score. I was looking at the scoreboard but it didn't make sense to me. I had to ask my husband which numbers I needed to look at.....sad -- very sad -- for me.
Saturday, May 22, 2010
A few random thoughts --
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!
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
New Information
The Alzheimer's Association has just released a new report regarding the trajectory of Alzheimer's Disease. This is important information -- if we don't do something now, this will tell you what is going to happen. For more information go here www.alz.org.
That is why our fundraising efforts are so important.
That is why our fundraising efforts are so important.
Tuesday, May 18, 2010
Thanks
to all of you that have sent emails to me lately, wondering about my whereabouts on this blog. Sorry I haven't written -- I'm here. Just having a problem getting my thoughts in order and typing them out. I seem to have a problem lately with getting my thoughts organized and out whether they are in written or verbal form. I went to the neurologist last week and he told me that he thought that I had gotten a little worse in my "delayed speech pattern". Which basically meant that I was having a hard time getting my words out. I told him I thought so too, but then he looked at me and said, "you know, there isn't anything I can do for you". Which although I know that is true, it's hard to hear sometimes.
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.
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
The Principle of the Thing
They always say - it's not how old you look, but how young you feel, right? Well, how come it aggravates me to no end, that when I go grocery shopping on Wednesdays, they always give me the senior citizen discount, when it doesn't apply to me!!!! It's just the principle of the thing.
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