Today was amazing. We had an early start so I snuck down and brought our breakfast up to the room on a tray and we got ready for our meetings. The first part of the day was given by doctors in very doctor like lingo so it was pretty over my head about current research. Eric is always looking at these things and said he didn't really learn anything he hadn't already read. The next meeting was excellent. We chose to go to the veteran affairs issue team meeting. It was very informative and very interesting to learn of the process for veterans with ALS getting benefits. It just reassured us that as difficult as it is for veterans, God has paved the way for Eric to get all of the benefits available to him. It was through prayer and strong persistence and God's hand just opening up the doors and removing all obstacles for us along the way. One of the veterans on the team has been in the process for about 3 years and still does not have his full benefits! Praise God for taking care of us. We met a Navy Veteran named James Thew and his wife who are advocates for ALS. He is in the picture with Eric above in his Yankees jersey. They are from Illinois and we will stay in close touch with them and join them in their fight for a cure and research dollars. He was diagnosed in 2004 and also has an eleven year old boy who was with them. We decided the first day that we will come back next year with our kids, parents and anyone else who would like to join us. Everyone here knows what ALS does and we are all on the same team seeking a cure for ALS.
Lunch today was delicious and during lunch a Dr. Raymond Onders shared about the new DPS which is a diaphragm pacemaker which is inserted with non invasive laser surgery. This new device moves the diaphragm for PALS when their muscles no longer can and can add up to two years to the life of someone with ALS. Their research and results have been incredible and this is very exciting while it is not a cure for ALS, it delays the most devastating effect of the disease which is breathing. Many PALS here have testified that this has been very effective and has made a huge difference. They recommend this surgery be done at the point that a BiPAP is needed which is now for Eric so we have a mission when we get home to start the ball rolling on this. Surgery can be done in Detroit and Cleveland and rumors are going up around here that it may be covered by the VA. This was very exciting to us and encouraging!
We got our letters and our DVD's finalized tonight and ready for the meetings with Congress and had dinner as a group in Georgetown at J Paul's which was delicious and we are now stuffed! We prayed with another man here representing Michigan named Brian who lost his mother to ALS about a month ago asking God to speak through us tommorrow in our meetings and we are ready and excited for tomorrow! My parents are coming up tomorrow to go with us to some of the Congress meetings and then we have one last evening in DC on our own before we fly out. We haven't had time to do any sight seeing so we are glad that we have been here before. On another exciting note: My sister Kristi got her CA125 levels back today and they have stayed at 47 despite her quitting chemo early on her own and the CT scan showed nothing of concern! Praise the Lord! While she is not officially in remission, she does not have to continue her chemo and will only have to do checks every three months. She concluded that while normal is 35 or below, she is just above average! This is so true because she has Christ by her side!
The pictures above are of our group here from Michigan (minus my parents- there are 13 of us) and me with Kate Linder from the Young and the Restless who is the spokesperson for ALS because her brother in law is suffering the affects of ALS. I felt bad when she asked if I watched the show, but I thanked her for representing this cause and speaking out. We were just told that Angela Landsbury of Murder She Wrote is also becoming a spokesperson for ALS (we had to watch that every Sunday night with my grandma growing up) It takes someone you know being affected to take up a cause and be an advocate. I know that is true for me. I am not a political or medical person, but I will support the cause for a cure for ALS for my husband and all of the other people we have met with the disease.
Sorry this got pretty long, but as I said, it was a very full and exciting day!
God Bless!
Lori and Eric
No comments:
Post a Comment