Chris’s Story

Site created on September 21, 2018

On Friday,  September 14, 2018, as Hurricane Florence, howled around Chris's house in Wilmington NC, he found that his legs weren't working properly.  A rapidly progressing paralysis overcame him.  On Sunday morning, unable to get up from where he had fallen trying to get out of bed, he called his friend Russell to ask for a lift to the hospital.  Needing help to move him, Russell called 911 and called Chris's parents (who are writing this at Chris's request). They began driving immediately to Ruth's cousin's in Chapel Hill because the roads to Wilmington were impassable.  On Wednesday one road opened up and they got to Wilmington.  A day later roads closed again.  

By Tuesday Chris had progressively lost all ability to move any part of his legs and hips.  His arms began to be affected.  By that point he had undergone x-rays, a lumbar puncture test, and two lengthy MRIs, and they began to narrow down the possible diagnosis to transverse myelitis.  Accordingly, that day he was put on a 5 day course of a mega steroid and an immune system booster (IVig).  Each day since then he has improved somewhat so that now he can move his feet and can push against a hand holding his foot.  He still has no sensation in his core which feels "tight" to him.  For the first time today he was able to lift his hips a bit off the bed. This progress is very encouraging. PT has begun. After a 3rd MRI and the return of a few more test results the neurologist today reported his belief that this is a case of transverse myelitis, a very rare condition.   

To learn about transverse myelitis go to:   https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Transverse-Myelitis-Fact-Sheet

His neurologist has requested a transfer to UNC Chapel Hill for a second opinion and to determine what may have caused this.  This information will impact his future treatment.  Chris has been on a wait list for an open bed in Chapel Hill since Sept. 18, and hopes to be going there very soon.  

He has his cell phone with him if you want to speak to him directly.  Updates will be posted here from time to time, particularly when there are significant changes to report.

Newest Update

Journal entry by Greg Heath

Chris and I arrived back in Canterbury around midnight last night.  Ruth and I are absolutely astounded at his recovery.  Such a relief.  We had heard about progress, but seeing is believing.  When I showed up in Chris's room on Thursday I saw that they had relieved him of his walker and replaced it with a cane! A short time ago we assumed he would still need regular wheelchair assistance.  Off we went on a day pass for an afternoon of haircuts, absentee voter arrangements, packing, and tending to the mundane tasks we tend to take for granted in our ordinary daily lives; oh yes, dinner out with friends too. 

The flights to New Hampshire were uneventful thankfully. The Wilmington and Manchester airports are small enough that Chris managed quite well. He did take advantage of the handicap assistance provided by the Philadelphia airport where the distances are extreme. The out patient work begins this week with the focus on gait, balance, and general strengthening. Onward!
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