The Nehemiah Ministry Project - Providing Catalytic Change Through Leadership

Kirk's Story


God is good. That was easier to say before I was diagnosed with ALS, but it is no less true today. I appreciate everyone's thoughts, prayers, and support for our family. Thanks for taking a moment to visit this site.

In 2006 our lives seemed to be perfect. In 2007, everything changed. I felt a little weak in December of '06 when climbing stairs but I attributed this to a nasty cold that I was having trouble kicking. In January I had developed a bit of a limp but I was still able to travel extensively for work and we took our first family snow skiing trip in February. I fell down a few times walking around the ski resort. I thought I was in terrible shape because I could barely ski down the mountain without my legs being totally exhausted. I even had to take a snow mobile ride down when my legs just gave out from exhaustion. Still I was more embarrassed about being out of shape than concerned I had any kind of life threatening disease.

After my lack of success skiing, Angie convinced me to see our GP who was a lot more concerned about unexplained leg weakness than I was. This led to X-rays, MRIs, and finally a referral to a neurologist for an EMG (needles and shocks...yuck). During this time, March 2007, I had gone from limping to using a cane and had begun an annoying habit of falling down on a regular basis. By the end of March I couldn't get up anymore without help when I would fall, but I still didn't have any clarity on a diagnosis. In April of 2007, I had another EMG at KU Med that led to the first mention of ALS as a diagnosis.

Those words begin to unravel our worst fears. In May, a friend was able to open the door for us to quickly get access to a second opinion at the Mayo Clinic. This involved more EMGs, Spinal Taps, MRIs, blood work, and poking and prodding than I thought was possible. Unfortunately the news was the same....I had ALS and a form that seemed to be moving with remarkable speed.

In June of 2007 I graduated from my walker to a wheelchair. In August my arms began to lose strength. As more than a few people have told us, ALS is a tough diagnosis. Yet, we are blessed and God is still good. As my legs and arms have lost their strength, we have discovered God's strength and the incredible care of countless friends and family. I was able to "retire early" from Aon due to a helpful disability policy and Angie, Danielle, Hannah, Sarah, and I had a terrific summer relaxing at the lake house. We had our usual crowd of friends and family come stay with us with the added bonus of lots of extra help in addition to the fun. Special thanks to the men from our small group who dedicated a weekend to doing all the odd jobs I couldn't do from powering washing the house, to waxing the boat, to trimming the trees, and fixing the 4-wheeler. Also, special thanks to our lake neighbors for builiding a wheelchair ramp for our dock and countless other odd jobs around our house. Our Overland Park neighbors have been terrific as well with lots of help with meals, mowing, and more. My small group men came through again with building the world's sturdiest ramp for our Overland Park home.

We are truly blessed. Even as this disease seems to accelerate, we look back on our lives and can honestly say we have no regrets. Angie and I have had a great 19 years of marriage. We have incredible kids who somehow are coping with this difficult road we are walking at 15, 13, and 10. My folks have put their lives on hold to be our live in help and Angie's folks are always at the ready to help at a moments notice. Psalms 90 says we should number our days to gain a heart of wisdom. Most of us never heed this advice and act as if we will live forever. ALS has given us the gift of knowing that I won't live forever while giving us a little time to live well now. Thanks for the cards, notes, meals, and many other ways you have all encouraged us. Mostly though, thanks for your diligent prayer to the Lord of heaven and earth. We have felt very prayed for and we often pray for those who are praying for us.