Thread: DC-Advocacy Day
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Old 05-12-2016, 09:36 PM #17 (permalink)
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City: Littleton
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Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,278
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
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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