I'm considering it for both myself and my husband. Several years ago, I testified before a Senate subcommittee during the Forum, but came home afterwards (S. didn't go). I think it would really be good for both of us to attend for the 3 days.
Log onto my home page - www.thealzheimerspouse.com - on the left hand side, scroll down to the DC Forum section and read all about my trip last year. That will tell you quite a bit about what you need to know to make a decision.
I was planning on going. I am registered. However, the CEO of our Alzheimer's Chapter has informed me that she doesn't know if anyone from their staff will be going this year due to budget constraints. That has nothing to do with those of us who go - we have to pay for everything ourselves - air fare, hotel, etc. For those of you who have not been, it is not an event one can go to alone. You need to be part of your State's delegation, unless you have the time and persistence to call your legislatures and senators and try to make appointments yourselves.
Tony Pesare, who was an active member of this board while his wife Tracy was battling EOAD - she died in July at age 43, went last year, and is planning on going this year. He is from Florida, and was with our group last year.
I honestly don't know what I am going to do - I would like to go, but not only is the expense prohibitive, I can't see myself handling Florida alone.
It is definitely worth going to those of you who are questioning it. I found it to be the experience of a lifetime.
My DH has gone 3 times. My daughter & I accompanied him the first time and our only daughter the next two. The expense and time off from work is a big consideration. I am still mulling it over but it would be wonderful to touch base with any one from this board who attends.
Trish, Is your spouse on the Alz Association Early Stage Advisory Board?
Can anyone who has attended give me an idea of how much my husband would be able to participate in? After reading Joan's blog's from last year, I'm concerned that it may be too much for him. Long walks in tight timeframes may not be possible. Does the Alz Assn set up the meetings with Capitol Hill staff? Do they walk you through it or are you on your own? Are people with the disease included in the whole forum, or mainly in specific programs geared to them?
As you can tell from reading my blogs, the schedule is BRUTAL. They keep you going from 7 AM until 10 PM. The only program specifically geared to those with AD is the Monday afternoon forum. Many with AD who attend are in good physical condition, and participate in other acitivities as they are able. I sat at lunch with Diane Thornton, who has AD, and she paced herself quite well, taking naps, and only attending certain functions. Unless the person with AD is in a very early stage, highly functioning, and in excellent physical condition, I certainly would not recommend that they do the Capitol Hill meetings. You need roller skates just to get from one office to another in the Senate and House on time.
IF I go this year, and that is still up in the air, Sid is NOT coming with me. He agreed that he could never handle the schedule, and why spend all that money for him to attend one event for a few hours on one day.
As for meetings with the legislators, whoever is in charge of your delegation - usually someone high up in the Alz. Assoc. from your State, makes the appointments. There is a whole program the day before that explains the talking points, what to say and how to say it when you meet with the legislators. I was absolutely dead on my feet that day, and I went to my hotel (I didn't stay at the convention hotel - too expensive) to take a nap. I COULD NOT BELIEVE IT, when I returned, and found out I missed the most important program. My fellow Florida delegates caught me up on what I missed.
When I returned home, it took me 3 days to recover from the experience. Wouldn't have missed it for the world, but you need to know what you're in for.
Thanks for the information. Tell you the truth, it doesn't sound like this is designed for people with AD or for people who are actively engaged in caregiving. Since we live in Maryland, we could be much more flexible about attending, but I'm going to have to research further and perhaps talk to the head of our local Alz Assn to see what she thinks.
If anyone who is planning to attend the PPF in DC would like to meet at the welcome reception Monday I think it would be a great time to do so. So Far I know Joan Trish and I are planning on going. Anyone else think this would be good?