Hitting the Hill

As most of you know Jim, Mikayla and I are in Washington DC for ALS Advocacy day. The 3 day conference started Sunday (Mother's Day). It has been a very busy and very educational experience. We have met many other pALS (people with ALS) and cALS (caregivers) with so many different stories.

Today we met with various people at the capital and shared our stories. It is really sad how horrible this disease is. You just look around and see how ALS affects people in so many different ways. So many in wheelchairs. Many not able to use their arms or legs. Some speaking with the "ALS accent" (probably my new favorite term) or unable to speak at all. There are countless caregivers and family members here remembering their pALS who lost the fight with ALS.

While here Jim once again became a guinea pig and gave blood for another research study. It actually took very little to convince him this time - just promise that it wasn't a repeat study! I am proud he lets me talk him into these things. Their is very little we can do in this battle except for give what we can to research. Now let's just hope that our time on Capital Hill proves effective and getting the funds to continue the research $$.

Though the past few days - today especially - have been both physically and emotionally draining I cannot wait to do this again! I hope Mikayla remembers her promise next year and returns with us. I told her next year maybe we can bring Ruthie but Mikayla says no. I think she has enjoyed her 1 on 1 time with mom and dad to much to want to share next year. (And from the pictures I am seeing I think Ruthie is enjoying her time with Aunt Jeannie to much to want to come!!)

One thing I did notice during this trip:
It was suggested we bring a "before" picture. I didn't think I had one that showed any change. Although you can obviously tell a difference in person I really didn't think some one could tell by a picture. So I started to look. First I found a picture of Jim holding Ruthie on his shoulders at the zoo... he can no longer do that, put on his coat and lately I have been cutting his food. However, those were things I realized so not too shocking. Then I came across a picture of Jim and I and my cousin Jaclyn's wedding (8/8/08). This is the same picture I often use for my FB profile. Gone is that smile and that sparkle in his eyes. As I handed this picture to each representative we met with it killed me. This is not a change you could miss. As I am telling his ALS story to these strangers (often through tears) he is just sitting there. No reaction, just completely flat faced.

TAKE CARE ... until next time!