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My 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.   

Feed

Benjamin Rudin posted a new journal entry, "Do It Yourself".

OK-I’m attempting to use my voice recognition software totype a post myself. For the record, I’d like to point out that I did thisyesterday but somehow screwed up and ... Read more

Benjamin Rudin posted a new journal entry, "Pizza Deliverance".

Yes, that is in fact an album by DBT and oh does it fit this post.  First, a huge shout out to Brian Mueller for coming up with and organizing The Pizza Hut ... Read more

Cindy milner signed Ben's Guestbook.

Becca, you and Ben are the strongest people I know.  God bless you.  Keeping you and your family's our prayer! Read more

Benjamin Rudin posted a new journal entry, "Where the Devil Don’t Stay - DBT".

This song really has nothing to do with anything other than it is Halloween and I thought that I needed to go back to DBT song titles for Ben.  Sorry that you are getting ... Read more

Benjamin Rudin posted a new journal entry, "Where the Devil Don’t Stay - DBT".

This song really has nothing to do with anything other than it is Halloween and I thought that I needed to go back to DBT song titles for Ben.  Sorry that you are getting ... Read more

Sue Johnston signed Ben's Guestbook.

Thanks for the update Becca. Even though you don't hear from me very often, my thoughts and prayers are with you, Ben and the boys. I'm sure the changes are frustrating ... Read more

Benjamin Rudin posted a new journal entry, "Still Fighting It - Ben Folds".

Wow!  We had an amazing weekend!  The Auburn High School Volleyball team hosted an ALS awareness event and raised enough money to provide us with one week of home health ... Read more

Benjamin Rudin posted a new journal entry, "Still Fighting It - Ben Folds".

Ignore word Ignore all Add to dictionary Ignore word Ignore all Add to dictionary Wow!  We had an amazing weekend!  The Auburn High School Volleyball team held an ALS ... Read more

Rita Schultz signed Ben's Guestbook.

Hi Ben and family,  I had you on my mind and thought I would drop you a quick note so you know you are in my thoughts.  I'm headed to Chicago for a few days, a little ... Read more

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