On Monday, February 13th -- you'll find me at the Georgia State Capitol to help promote Alzheimer's Awareness to our legislators. Will you join me? Many people are intimidated to go to the "gold dome" as we often call our capitol. They are intimidated by not knowing the process of talking to our legislators and afraid of saying the wrong thing. The great day about the Awareness Day at the Capitol is that if you feel uncomfortable talking, you don't have to -- you just need to be there. There will be others willing to talk on your behalf, but you showing up and adding to our numbers makes a difference. When legislators see the "sea of purple" (since you'll be given purple shirts to wear" it makes a big impact on them. We want to make legislators aware that Alzheimer's isn't going to go away any time soon, and we need their help.
The Georgia Alzheimer's office is currently working on several initiatives that we want our legistlators to know about. Items that will affect not only those living with the disease but certainly the hundreds of caregivers in Georgia. One of those things is a state Alzheimer's Plan. Currently, 19 states have state Alzheimer's plans. These plans help to guide how Alzheimer's is handled on a state basis and will work in conjunction with the National Alzheimer's Project Act that is currently being formed on a national level. The state plan can deal with all types of issues facing those dealing with Alzheimer's to help with respite care, programs and services and laws that protect our loved ones with Alzheimer's.
Many initiatives need funding -- and although we know funding is in short supply these days, if we don't stay out in front of our legislators, then we will be forgotten.
If you've never done anything like this before, please consider joining us. As a favor to me, and the other 200,000 people living with Alzheimer's in the state of Georgia. Numbers count. And we need you to help make a difference. Just your presence is something. Don't be intimidated -- you won't have to do anything you aren't comfortable with. But, if you are reading this blog, you probably have someone in your life you know with Alzheimer's and you can help us just by showing up on Feburary 13th.
The day will start with lunch, then a walk to the capitol to meet with legislators and possibly the governor and end with dinner and a candlelight tribute on the steps of the capitol. You can come for all or part of it. I can't stress enough what an impact seeing hundreds of people wearing purple shirts in the capitol makes.
You must register -- but it is simple and can be done online. There is also training if you so desire to learn about the iniatives that are going to be discussed. You can do that in person or online if you so choose. We just need to know if you are coming or not so we can plan for food and shirts for everyone. You can read more about here: http://act.alz.org/site/PageNavigator/georgiaadvocacy.html1
Please make Alzheimer's a priority -- we need everyone's help!
Thursday, January 19, 2012
National Alzheimer's Project Act - NAPA
This week the National Alzheimer's Project Act was discussed in Washington DC. This is one of the first of many meetings to bring this act to fruition. An article ran in the USA Today regarding the act and the work that is being done on it.
You can read it here : http://yourlife.usatoday.com/health/medical/alzheimers/story/2012-01-16/US-launches-national-war-on-Alzheimers/52603476/1
You can read it here : http://yourlife.usatoday.com/health/medical/alzheimers/story/2012-01-16/US-launches-national-war-on-Alzheimers/52603476/1
Thursday, January 12, 2012
January 20
I've written about my friend Lisa Genova, author of Still Alice and Left Neglected. January 20 is a big day for her -- she will be appearing on the Today Show that morning, she will be on Dr. Oz show that day and then that night she is part of a documentary on younger on-set Alzhiemer's.
The documentary is "To Not Fade Away". It is on at 10:00 p.m. January 20. The bad part for me at least is, that it is airing on RLTV. RLTV is a network aimed at the "over 50" age group and stands for "Redefine Life". However, it is not in my area. To see if you get RLTV on your cable system, you can go to their website at http://rl.tv/ an put your zip code in. That will tell you whether or not you receive that channel and where to find it.
Thanks to Lisa for all she does for our Alzheimer's community. She's working on a new book and I'll tell you more about that at another time.
The documentary is "To Not Fade Away". It is on at 10:00 p.m. January 20. The bad part for me at least is, that it is airing on RLTV. RLTV is a network aimed at the "over 50" age group and stands for "Redefine Life". However, it is not in my area. To see if you get RLTV on your cable system, you can go to their website at http://rl.tv/ an put your zip code in. That will tell you whether or not you receive that channel and where to find it.
Thanks to Lisa for all she does for our Alzheimer's community. She's working on a new book and I'll tell you more about that at another time.
Tuesday, January 10, 2012
Comments
I've had lots of comments lately. Many -- I'm not posting here.
I'm glad the last post received some comments though -- and to one I too am sad this had to happen to Coach Summitt -- or anyone.
It's just Tuesday and this has already been a bad week. Seems like I set out to do one thing and it doesn't go my way and the rest of the day goes down hill from there. I'm frustrating myself by not being able to do some things and that makes me mad. Learning new things is difficult and I get frustrated so easily. I think "this can't be that hard" and it isn't really -- I just can't grasp it. It is so maddening!!! And, if I do "get it" the answer to it was in front of my nose the whole time and although I could see it and read it -- I couldn't figure out what it was telling me. That disconnect in the brain can play lots of weird tricks on you!
I'm glad the last post received some comments though -- and to one I too am sad this had to happen to Coach Summitt -- or anyone.
It's just Tuesday and this has already been a bad week. Seems like I set out to do one thing and it doesn't go my way and the rest of the day goes down hill from there. I'm frustrating myself by not being able to do some things and that makes me mad. Learning new things is difficult and I get frustrated so easily. I think "this can't be that hard" and it isn't really -- I just can't grasp it. It is so maddening!!! And, if I do "get it" the answer to it was in front of my nose the whole time and although I could see it and read it -- I couldn't figure out what it was telling me. That disconnect in the brain can play lots of weird tricks on you!
Tuesday, January 03, 2012
We Back Pat Week
The Southeastern Conference has posted on their site that there will be a "We Back Pat Week" in honor of Pat Summitt, University of Tennessee women's basketball coach who was recently diagnosed with younger on-set Alzheimer's. Thanks to the SEC and the basketball nation for recognizing her courageous stance to bring public awareness to this disease. You can get the link here: http://www.secdigitalnetwork.com/NEWS/tabid/473/Article/230304/sec-launches-we-back-pat-week.aspx
Sunday, January 01, 2012
2012
Happy New Year Everyone!
I was pretty disappointed in my lack of posts at the end of the year. I really wanted to do better. I would wake up in the middle of the night with the best ideas, plan it all out in my head and by morning, it was gone. I'm sure you're saying, why didn't you get up and write it down. I've tried that before, and when I do, I can't go back to sleep. So, I am giving up ideas for sleep is what it sounds like! Since my sleep is often given up to hot flashes (or "power surges" as one friend calls it) I don't like to give up much more!
I was overwhelmed with our trip to Australia, and quite frankly it took a lot to get back to normal after that trip. It pretty much took the wind out of my sails if you will. But, it was worth every minute -- it just came at a bad time of the year, but it was the only time we could go and did I mention IT WAS WORTH IT?
I don't usually do the traditional resolution thing at the new year. Why should you have to wait for a new year to make a change? If you need to make a change, you need to make a change. I'm not sure I'm up to "changing" things this year, that probably isn't within my power -- or at least the things I would like to change are not. But, I need to be better about some things. ....but don't we all.
I want to be a better friend. I don't want to keep saying "we shouldn't wait so long to get together" -- I just need to make it happen. A few of my friends have kind of gone by the wayside this past year. That saddens me some. I wonder why that is. Do our friendships run in cycles? Do we just not work hard enough at it? Is it maybe the friendship wasn't meant to be? Has the friendship run its course? Am I to blame? I get the feeling people don't want to be around me as much anymore. That's kind of hard to come to terms with but what bothers me more is not knowing. If those that choose not to be friends any longer would just admit it or bring it to a close, rather than leaving that faint hint of welcome in their voice it would be so much better. I know that is hard to do, but I'd rather just know why it is the friendship has ended. We have invested a lot of time over the years and to just let something go without paying attention to it is sad. I don't know what else to say about that.
Another thing I want to work on is to be better to myself. I need to pace myself better. I need to let things go more easily. It's hard to admit you can't do something that you could do all your life -- I just need to let go! I'd like to do more public speaking on behalf of Azlheimer's so if there is a group you think I could talk to -- let me know.
I'm grateful for a lot last year. My family's health has stayed about the same (not gotten worse thankfully), there have been many new babies born to bring a smile to my face, my son and daughter-in-law have moved "back home", I got a new knee and lots of help from friends when I was going through that ordeal. I read Dr. Mary Cail's book, The All-Weather Friend’s Guide to Alzheimer’s Disease and everyone dealing with someone with Alzheimer's should read it. I've stayed active on Alzheimer's Association's boards. Our Walk to End Alzheimer's reached its targeted goal of $75,000 raised. And, of course, the aforementioned "trip".
The bucket list got a little shorter this year, but I'm thinking of adding more things to it. There really can be no end to your bucket list if you really think about it -- there is always something you want to do. I've been very fortunate all in all. I'm still pretty active physically even though not as much mentally -- but I'm hanging in there.
Thanks for all your support. I'm going to try to be better about blogging in this new year.
I was pretty disappointed in my lack of posts at the end of the year. I really wanted to do better. I would wake up in the middle of the night with the best ideas, plan it all out in my head and by morning, it was gone. I'm sure you're saying, why didn't you get up and write it down. I've tried that before, and when I do, I can't go back to sleep. So, I am giving up ideas for sleep is what it sounds like! Since my sleep is often given up to hot flashes (or "power surges" as one friend calls it) I don't like to give up much more!
I was overwhelmed with our trip to Australia, and quite frankly it took a lot to get back to normal after that trip. It pretty much took the wind out of my sails if you will. But, it was worth every minute -- it just came at a bad time of the year, but it was the only time we could go and did I mention IT WAS WORTH IT?
I don't usually do the traditional resolution thing at the new year. Why should you have to wait for a new year to make a change? If you need to make a change, you need to make a change. I'm not sure I'm up to "changing" things this year, that probably isn't within my power -- or at least the things I would like to change are not. But, I need to be better about some things. ....but don't we all.
I want to be a better friend. I don't want to keep saying "we shouldn't wait so long to get together" -- I just need to make it happen. A few of my friends have kind of gone by the wayside this past year. That saddens me some. I wonder why that is. Do our friendships run in cycles? Do we just not work hard enough at it? Is it maybe the friendship wasn't meant to be? Has the friendship run its course? Am I to blame? I get the feeling people don't want to be around me as much anymore. That's kind of hard to come to terms with but what bothers me more is not knowing. If those that choose not to be friends any longer would just admit it or bring it to a close, rather than leaving that faint hint of welcome in their voice it would be so much better. I know that is hard to do, but I'd rather just know why it is the friendship has ended. We have invested a lot of time over the years and to just let something go without paying attention to it is sad. I don't know what else to say about that.
Another thing I want to work on is to be better to myself. I need to pace myself better. I need to let things go more easily. It's hard to admit you can't do something that you could do all your life -- I just need to let go! I'd like to do more public speaking on behalf of Azlheimer's so if there is a group you think I could talk to -- let me know.
I'm grateful for a lot last year. My family's health has stayed about the same (not gotten worse thankfully), there have been many new babies born to bring a smile to my face, my son and daughter-in-law have moved "back home", I got a new knee and lots of help from friends when I was going through that ordeal. I read Dr. Mary Cail's book, The All-Weather Friend’s Guide to Alzheimer’s Disease and everyone dealing with someone with Alzheimer's should read it. I've stayed active on Alzheimer's Association's boards. Our Walk to End Alzheimer's reached its targeted goal of $75,000 raised. And, of course, the aforementioned "trip".
The bucket list got a little shorter this year, but I'm thinking of adding more things to it. There really can be no end to your bucket list if you really think about it -- there is always something you want to do. I've been very fortunate all in all. I'm still pretty active physically even though not as much mentally -- but I'm hanging in there.
Thanks for all your support. I'm going to try to be better about blogging in this new year.
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