hi to you all.

this entry is from Eric's mom. Eric's dad and I took Eric to Detroit on Wed. to talk on the radio station,WMUZ on the Bob Douca show. they were told they had five minuts to talk and that is what they,got. Eric was asked what his first signs were that he had ALS As you all know it started in his right arm, from there it went to his left arm them to his legs,neck. He has the most amazing shine on his face all the time.

After the radieo show we met with Amy Whipple who is with als tdi, Midwest Regional, she is the director for the mid west. what amazing lady, she had so much information for Eric.

Eric asked me to do this and I have no idea what to say. I was glad we could spend the time with Eric.



As you all know we have three chrilden and we are so proud of all of them.

VICTORY THIS WEEK!

Victory! Senate Passes the ALS Registry Act, the United States Senate passed the ALS Registry Act!! Thanks to your outreach, we have just won a huge victory for people with ALS and their families across the country. We have made a difference! The bill now heads to the House, which is expected to quickly agree to the Senate version, which included technical changes made during the legislative process. We will keep you updated as the bill moves toward enactment into law. Also, It's Official!!!VA to Grant Benefits to All Veterans with ALS
We did it! Tomorrow, September 23, the Veterans Administration will publish regulations officially establishing ALS as a service connected disease! Effective immediately, all veterans with ALS will now have access to the highest level of VA benefits without having to prove that their disease was caused by service in the military. This is a tremendous victory for all veterans and is the culmination of years of work by The Association, our VA Issue Team and veterans across the country. It is clear that our outreach - testifying before Congress, partnering with the VA, advancing research to identify the connections between ALS and military service and educating the public about this issue - have paid off. The Association has championed legislation (H.R. 5454) that would have established ALS as a service connected disease. However, thanks to our efforts at Advocacy Day and throughout the year, this legislation no longer is needed! ALL Veterans with ALS Eligible for Benefits This new policy means that ALL veterans with ALS will receive the benefits they need, deserve and have earned. Importantly, it is broad in scope and applies to all veterans diagnosed with ALS regardless of when or where they served and regardless of when they were diagnosed with the disease following service in the military. A summary of the regulation can be found here. The text of the regulation is available here.Tomorrow and in the coming days, The ALS Association will post additional information about the regulation, including answers to frequently asked questions, an overview of benefits available to veterans with ALS, as well as guidance veterans can use to obtain service connected veterans benefits.The ALS Association would like to thank VA Secretary James Peake, Congressman Henry Brown (R-SC) and Senator Lindsey Graham (R-SC) for their efforts to work with us and the ALS community in support of veterans across the country. We also would like to thank all veterans with ALS whose outreach to Congress has helped make this important benefit possible.Additional information will be available on our website on September 23. If you have any questions, please do not hesitate to contact the Advocacy Department at advocacy@alsa-national.org.
Congratulations to everyone!

A good belly laugh

Sorry for being so long between updates. Eric and the other 9 men arrived safely home on Sunday around 4:00 pm after a very long drive home from Nebraska. He will write about the trip soon. He had an incredible time of bonding with these guys and is so glad he went. The time went by fast for us here at home since we were sleeping most of the time they were gone. Zach had his first football game on Saturday in the continuous rain which I video taped under my umbrella for Eric to see. Their team "the Gators" won and Zach didn't even care that he was soaked from head to toe. It was a great rainy Saturday stomping in puddles. This week has been pretty steadily busy with Dr. appointments and home visits. We get Eric's new electric wheelchair tomorrow morning and will trade it for the loaner we currently have. It is a Permobil C300 and can do just about anything.
Our daughter Madison has been saying things lately that have made us bust up laughing. She is learning that it is good to make people laugh and we are not laughing at her in jest, but because she makes us smile. Here are a few of her latest. I have been getting these little holes in my shirts from wearing them out in the wash and she said "maybe you are getting too big for your clothes" Eric just busted a gut, me not so much. It reminded me of the time when Zach was little and he asked my grandma why she had all the cracks in her lips and my grandpa couldn't stop laughing. Then today we were talking about marriage and I told her that I married my boyfriend and she said "and then you married daddy" Even the table next to us at Wendy's was laughing at that. Then when I opened my sour cream for my potato and squirted it out, it shot out the top and sprayed my neck and front ot my shirt and we all started laughing uncontrollably. We went to the mall tonight and got the kids Build a Bear's with Eric's voice in them and had a lot of fun just hanging out as a family. Hope you are all having a great week!
Blessings,
Lori

P.S. a few of you have been wondering if I am sleeping better on our new bed and I adjusted to the new bed in less than a week and we love it! Just wish I could sleep longer!! Zach gets up for school now at 6:30 a.m!

"I LOVE A GOOD CRY"

It has been a while since I updated the blog, Lori has been keeping it updated the best she can. Thank you for taking time to read about what we are going through it is not easy, but your love and prayers are felt & appreciated. We have been truly blessed in so many ways during this season of our lives, but many fighting this disease are not as fortunate. Please pray for all those who are suffering from this awful disease. We a relatively relaxing week last week adjusting to the school schedule and football practices. Last Saturday night was amazing night. I was given the opportunity to speak and share my faith in an auditorium at Aquinas College before the Tuesdays with Morrie play. The play was so well done and was about Professor Morrie Schwartz battle with ALS and his relationship with Mitch Albom, one of his students. Many of you have read the book or seen the movie, but Lori and I had never done either. What made it special was having both of our parents there along with some of our friends to share the powerfully emotional experience with us. It was a chance for us all to release our tears together about this horrible reality we face and as Morrie says “I love a good cry”.
One thing that I found missing from his life was the definite presence of Christ in his life. He was actually an agnostic at the beginning of the play. He referenced God and angels, but not what Christ did for his eternal security. We have hope only in Christ and his promises for all of us. One thing I really took away from the play among many was the quote “When I am taking, I feel like I’m dying but when I give of myself, I feel like I am living”. This is how I feel. I cannot sit back and let this disease take my life and only sit back and take from everyone. I need to have purpose by giving to others and sharing hope and the inspiration that only comes from God in ways that He has equipped me to feel like I have something to live for. The play was to benefit the ALS Association and there was a silent auction beforehand. They raised over 5,000 last we heard. We were outbid on a Michigan State basket with a signed basketball we were trying to get for Zach and after the play, this couple came up to us and said they wanted us to have it! What a blessing for them to do that and they don’t even know us. We were overwhelmed with gratitude. Another God moment was meeting the author of the book Lori is reading (Shelly Beach of the caregiver devotional called, Precious Lord, Take my Hand) Lori has quoted some of her late night readings from her book on the blog. We were able to meet the cast (only two people as pictured above) and tell them what a great job they did. Overall, a wonderful evening. Thank you to the Klumpps for watching our kids all night.

Prayer Requests are for me and the 9 men riding in an RV to Nebraska on Friday night straight through to see a Huskers football game and then returning home Sunday. Pray for safe travel and rest and a great time of fellowship. Lori thinks I am a little nuts but she is looking forward to some down time from caregiving and thrilled that the guys are willing to help me out.

Also, we had a meeting with our rep for the VA specially adapted housing grant we got who was an awesome Christian man. After meeting with him for six hours on Monday, we were overloaded with information and very strict criteria that needs to be met to get approval by Cleveland which takes a minimum of four to six months to get the green light. Please pray that God will give us wisdom in how to proceed at this point. Please pray that our house would sell soon so the decisions and timing will be easier to make. As this information has sunk in, we are feeling very discouraged about the grant we were so excited about last week. We know God still has a plan for us and we want to follow His will so pray that we will hear His voice loud and clear.

If anyone would like to walk with us this year in the Walk to D’Feet ALS on October 11th at John Ball Zoo, please contact Matt or Stephanie Kucinski at mkucinski@hotmail.com or 616-307-7429.

Have a blessed week.

Eric

School has begun!

We had our first day of school today and the kids did great! One small error on the bus stop for Zach so he missed his bus and I drove him, but other than that they had a great first day. It sure was hot though (in the 90's) and no A/C at school. Looking forward to cooler weather again.
We had a great weekend and went to Holland State Park and did family pictures with my dad (a very talented, retired photographer) We also did the kids pictures and I can't wait to see them! It was a perfect evening with a beautiful sunset while the kids swam in Lake MI (70 degrees).
Monday we were asked to do an interview on the Jerry Lewis MDA telethon at Celebration Cinema (MDA runs the ALS clinic that Eric goes to and has a division for ALS). Besides going to the wrong theatre, it was very cool to be a part of what they are doing to raise money for 40 neuromuscular diseases for support for patients and research and sending kids to camp, etc. The kids were great too! We were interviewed by Wood TV 8's Miranda and she could not have been nicer.
This week we are hoping to get adjusted to our new schedules as many of you are.
Blessings to all of you!
Lori and Eric

Save the date for the Walk to d'feet ALS on October 11th. More details to follow!