Bubble Gum, Duct Tape, Spit, and Wine!

For the past month I felt like the old TV show MacGuyver more so than normal or the line from Project Runway, “Make it work!”   At the end of March I finished a five year assignment in Buffalo NY.  I live in Rochester, NY.  For anyone that doesn’t know how far that is, from my home to my office I logged approximately 176 miles round trip; about three hours a day driving.  Most people that live in NYC, Chicago or Boston understand.  However, in upstate NY there really isn’t a good way to commute this distance via public transportation other than to drive. So a couple of years into this assignment, I was grateful that I could work from home twice a week.   

When the assignment ended I was grateful, I could now be in Rochester and be able to help Jon get ready or take him to school and hopefully find work in Rochester.  My husband needs a break sometimes.   However, life with Duchenne is always changing.   A few weeks ago Jon slipped in his room getting out of bed in the morning.  He fell and ended up with a compression fracture. Normal things like dressing, bathing, eating and toileting became “Make it work” events.  He couldn’t walk anymore without lots of pain, transfers between the car and getting to the wheelchair we needed to figure out.  The upside, I figured out how to drive his wheelchair. I would have Jon stay in the car while I brought his power chair to him.   My husband used the manual chair to get him from the car to the building where we store his power chair on campus.  It took a couple of weeks to get the x-rays and the MRI to uncover the precise location of the pain.   Jon kept saying he bruised coccyx.   A week after Jon fell; he and my husband were on a plane to Utah for the Ataluren clinical drug trial. My husband made it work.  They needed to wait for the isle wheelchair which is always a long and tedious process.  Jon managed the pain with Tylenol.  On Sunday, they called from Utah and said that Jon’s pain wasn’t getting any better.  I called the Dr. first thing Monday to get an x-ray scheduled for Tuesday morning.   The x-ray uncovered a problem, however it wasn’t clear if this was an old issue a new one.  In 2007 when we had a complete work up done at Cincinnati children’s, I had foresight to request a complete report of the test results. I was able to notify the back specialist where the previous fractures were.  It was determined that an MRI was needed.  Insurance needed to approve the MRI.  It took a week to determine that it was a mild compression fracture.  Jon will need a back brace.  I spoke with the back specialist regarding the brace; my concern is always to keep Jon as mobile for as long as possible.  Can a brace be made to account for Jon’s posture?  Jon’s standing upright and walking is a balancing act that he alone has figured out.  I’m not sure if we can brace his back so the fracture heals and still allow Jon to walk.   We met with the brace specialist.  The brace will ready in a week.   In between the appointments for the measurements and picking up the actual brace Jon saw Dr. Biggar.   Jon is now walking and the back pain is gone.  Jon may not need to brace by the time it’s ready, but we will have it for next time.

Life with Duchenne, is ever changing and filled with “MacGuyver “and “Make it Work” moments. My analogy for anyone that’s not dealing with Duchenne is that my life is held together with bubble gum, duck tape and spit and on occasion a glass of wine.  However, no matter what your life is like I think we can all take some lessons from the MacGuyver TV show.

Lessons Learned from the TV Show MacGuyver’

* Any problem can be solved with a little ingenuity.
* One person can make a difference.
* Never underestimate the power of chocolate.
* Nice guys don't always finish last.

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