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Patient Services |
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Patient Registration |
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KWC Calendar
May, June, July? |
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What's New
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Casino Night, Springfield
April 4, 2008
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Night of Hope
May 3, 2008
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2008 National ALS Advocacy Day
Sunday, May 11 - Tuesday, May 13
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Joe McGuff ALS Golf Classic, KC
May 19, 2008
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Kerry Gray ALS Pro/AM, Wichita
June 22/23, 2008
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Walk to D'Feet ALS
coming in August, September, and October
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Tools for Caregivers
click to download
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Research
Study on Quality of Life in People with ALS |
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Living with ALS: Dan Spiering
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by
Dan Spiering
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My name is Dan Spiering, and I am 41 years old. I am married to my wonderful wife, Michelle, who is my full-time caregiver. We have two daughters, Destiny, 17, and Brooke, 15.
I worked at Lincoln Cold Storage for 13 years and had just worked at BNSF in Lincoln for one year when I was diagnosed with ALS. The support from my coworkers at BNSF was incredible when I was diagnosed and had to quit working.
I called my wife in April [2006] and told her that I had a limp going on with my right leg and that she needed to make me a doctor’s appointment because something was wrong. She got me into our family doctor, and he suggested we get some testing done. He scheduled an MRI and also made an appointment for us with the neurologist. It was over a month before we could get into the neurologist.
At the end of May, we finally went to the neurologist, and the doctor told me that it looked like I may have a motor neuron disease. He wanted us to make another appointment to see one of his partners who specialized in this disease. In June we went back to see the other neurologist, and he scheduled some CAT scans and other tests to be done before he could diagnose me. On July 14, we went back again to go over all the test results and he told me I have ALS, also known as Lou Gehrig’s disease. Our neurologist had also set up an appointment for us at Mayo Clinic so that we could have a second opinion. We went to Mayo on July 28, 2006, and this is when they confirmed my diagnosis.
When the doctor told me I had ALS, I was [angry]. How could this happen to me? The ride home with my wife on July 14 was the longest, quietest ride home I have ever had. I don’t think my wife knew who Lou Gehrig was, so this was not sinking in for her like it was for me. I had just gotten on with the railroad and loved my job. Things had been going so well for me and my family. I knew what Lou Gehrig’s disease was, and it scared me to death to think about what was going to happen to me. I lost my mother when I was 13 and I could not think about my daughters losing their father at a young age.
read the rest of the story
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