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Make Sure Ben Is Not Alone This Holiday Season

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Ben’s Story

Welcome to our CaringBridge website. We've created it to keep friends and family updated.

Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.  We treasure each and everyone of you and your support!

After experiencing some wrist and hand weakness during the summer of 2011, I decided to go to the doctor with what I thought was carpel tunnel.  At the initial visit the doctor couldn't decide whether or not to send me to an orthopedic specialist or a neurologist.  After spending about 10 minutes with the orthopedic doctor, she sent me to the neurologist who spent a lot of time looking at my nerves and muscles.  I spent the next six weeks having tests, including EMG's and MRI's, and on October 24, 2011 was given the diagnoses of ALS or Lou Gehrig's disease. 

For the last 5 - 6 months, I have been seeing a doctor at Washington University in St. Louis for a second opinion.  I've under gone a variety of additional tests, and in April 2012 the diagnosis was confirmed.

Becca and I have been pretty guarded about this information because we hadn't told the boys (we'd been advised not to say anything until the "official" second-opinion diagnosis).  Now that we have had a conversation with them, we are comfortable talking about it in the open.  For those of you who don't know much about the condition (and we certainly didn't prior to the diagnosis), there is no real time line for how it progresses.  Every person is different.  We'd like to stress that if you have questions, come and talk with us.  We are not uncomfortable taking about it.   Although typical to our relationship we are dealing with this through our sense of humor, so you may have to deal with some of my bad jokes.

So for now we are taking things one day at a time, getting things in order and spending quality time together.  Becca or I will post updates periodically and we look forward to your messages.