Old 05-12-2016, 08:13 AM #16 (permalink)
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Default Re: DC-Advocacy Day

Made it home from DC and what a trip it was! So glad to have had my daughter& wife Beth w/ me as there was a lot going on. 1 St night friendly get to know each other dinner & show ( comedy) lots of people to meet. Great to see Becky& Matt, Mary& Tom, and wonderful to see grace and talk some.
Monday was prep day on the issues to be discussed with senators& reps. That night the incredible movie premier of "GLEASON". WOW! What a story! Tears pouring down. You all must see this flick. Tuesday, big day on the hill. Our contingent was small as we were the only ones from WV, three of us & a guide who was so much help in getting us around the hill and staying on track. We felt we were effective w/ our senators& rep. Becky described the issues so no need to do that again. I out maneuvered bedlack once again and he conceded my dress up one upped him. I dressed as corlorful as possible for the hill!
All in all it was a great time and we met many new friends both Pals&Cals from all over the country. Thank you ALSA and Marriot and all the young volunteers
And Steve Glendon's family & friends. That about it for now . Now on to the next thing! Love ya all chally
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Old 05-12-2016, 08:36 PM #17 (permalink)
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Default Re: DC-Advocacy Day

You were all in my mind and heart the entire time we were there, but especially while telling our stories. I shared my ultimate nightmare (after asking Matt to remove his hearing aids). Your experiences were with me as they have shaped my understanding of the horrible irony of ALS--if we get our wish of a long life with this disease we increase the chances of reaching that locked in state. I was much more descriptive and it was very emotional, particularly since it was the first time I'd shared that fear/vision with anyone.

There was so much more that I could have said, but I'm not sure that any of us could have handled it.

We did make the point that those who need the most help are the least able to be in DC advocating for themselves.

With three years of this under my belt, I find myself becoming more assertive and on the verge of belligerence when things don't go our way. Maybe it's just that point for me--the point when anger at the disease (as opposed to my husband having the disease) fights to take over. The impending loss of his arms will put us in a whole new place, and I fear it's right around the corner. I don't know that we'll be able to do it again, but I'm thankful for having had the experience.
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Old 05-15-2016, 02:53 PM #18 (permalink)
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Default Re: DC-Advocacy Day

So glad I got to meet you Chally! For some reason the picture is sideways.

Sorry I missed you Becky.

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Old 05-16-2016, 04:35 AM #19 (permalink)
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Default Re: DC-Advocacy Day

WONDERFUL photo!!! Thank you so much for sharing it, I love 'seeing' our family
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Old 05-16-2016, 06:13 AM #20 (permalink)
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Default Re: DC-Advocacy Day

We hung out with Abe
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Old 05-16-2016, 06:14 AM #21 (permalink)
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Default Re: DC-Advocacy Day

Mary, that is a CLASSIC! I bet Abe didn't have a lot to say though he looks impressive
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Old 05-17-2016, 03:25 PM #22 (permalink)
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Default Re: DC-Advocacy Day

Becky,

I made it, just didn't get on the forum and know this thread was here. Stayed for the rest of the week and saw the baby panda at the zoo. It rained every day! Hoping to make it next year, especially since that is where I am from and I get to see lots of high school and college friends.

Doug
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Old 05-17-2016, 03:27 PM #23 (permalink)
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Default Re: DC-Advocacy Day

Chally,

You remind us of a guy in our local support group, or I should say your beard does. I told his wife and she said she always knew there was a double Dale out there. Great meeting you and thanks for representing WVA.

Doug
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