Saturday, May 21, 2011

Washington DC Part Two

I'm back home after five days in DC. It was nice spending time with my son and daughter-in-law, but my main purpose there was to attend the Alzehimer's Association's Advocacy Forum. We spent one whole day on Capitol Hill talking to our legislators and their aides about the two bills I mentioned in my post below. Reaction was good and hopefully we will see some movement on these bills in the near future.

I was also able to meet many folks who belong to a Facebook group called "Memory People". It was started several months ago and has almost 700 people in the group. Had I thought about it before, I would have planned to have a "meet up" with everyone, but as word spread that some of the group's members were there we were able to meet. At first the Facebook group started out with just those with Alzheimer's and has grown to include caregivers as well. It is a closed group and you need to be invited to be a part of it, but if you are interested in it, please leave me a message with your email address (I won't publish it) and I'll get back to you.

My husband accompanied me to DC but didn't go to the meetings with me. He says it depresses him. I understand that -- it depresses me too, but I get through it. Having him with me was hard. Hard from the standpoint that I can only process so much information at a time. Usually when I go to these meetings, I'm able to go to my room at night and not have to talk to anyone, not have to listen to the television blaring and just have some down quiet time. When you are sharing a room, that is hard to do. I couldn't really relax or wind down before it was time to go to another meeting. I know I only absorbed about half of what was said because my brain was on overload, but I was there. I also worried about what my husband was doing, when and where to meet him, etc. Plus, as you know from my other posts, he worries about everything -- the weather, the cab fares, the restaurants, you name it he worries about it. And he doesn't just worry silently -- he has to share with me. I've lived with it for over 30 years -- i should be used to it right? Again.....slow learner!

I encourage you to hop on over the website for the Alzheimer's Association and check out what happened at the Advocacy Forum. And, if you aren't already an advocate -- I hope you would consider doing it. It doesn't take much time, and we need you.

Another site I would encourage you to go to is Alzheimer's Impact movement (AIM) is a nonpartisan, nonprofit advocacy organization working in strategic partnership with the Alzheimer’s Association to make Alzheimer's disease a national priority. There's lots of great information on the site about current legislation and issues that are vital in moving our cause forward "A World Without Alzheimer's"


karen said...

Glad you are back. I am going to check out the facebook page. Thanks

Stanley Guan said...

Have read your essay in the book "Alzheimer's in America." I'm really touched by your courage and effort to share your experience of living with Alzheimer's. Keep on good work. All Americans should realize that Alzheimer's actually is an aging disease. If you live up to a certain age, you will probably have it and must live with it.

Sandy said...

Kris, I enjoyed your post and all the excitement of Washington DC. But mostly, enjoyed hearing about your worrisome hubby.

Believe me, men like that are just as worrisome to us who don't have EOAD. Especially the ones who want the world to know about all their worries.

Now I'm laughing. Of course you know, I have one just like yours.