Kentucky Support Group of the TMA
Andy Johnson

Catheter, lumbar puncture, and physical therapy are words we never want to hear when talking to a physician about our healthcare.  In February 2005, though, I lay in a hospital bed in the University of Kentucky Medical Center (Lexington, KY) with my legs numb from the waist down, listening as the doctors and nurses used those words to tell me about things that applied to my body!   

I had spent most of Sunday, February 20th, grading my students’ essays, and I looked forward to taking a break to watch The Simpsons.  When I sat on the floor to try a different sitting position, though, an intense pain flared from my lower back throughout my legs.  The pain was so strong, I could barely breathe, but I thought I’d just pulled a muscle.  When the pain turned to paralysis in both legs, though, I knew it was more serious.  Unable to even support my weight on my knees, I called my girlfriend, Emily, who rushed over and called an ambulance.  Later, she would recall with laughter that I had told her how relieved I was that I had vacuumed my carpet earlier that day; I didn’t want the EMTs to think I lived in filth.  It was embarrassing enough to have them put my 36-year-old body on a stretcher and carry me to the ambulance.

The next two days were filled with tedium, fear, and frustration, including four hours in the UK Med Center waiting room, then 26 hours in the ER while various medical staff stabbed at my feet and legs with pins.  One doctor, convinced I was faking it, demanded I try to walk, and stood watching unsympathetically when, still unable to support my own weight, I fell to the floor and bruised my knees.  Months afterward, my feet still showed scars from his attempts to test my nerve responses by gouging me with the sharp end of a wooden swab he’d snapped in two. 

Many people find the confines of an MRI claustrophobic, but during my nearly week-long stay in the hospital, I underwent five trips to the magnetic cocoon.  I didn’t mind it, though, because at least no one was stabbing me while I was in it.  Despite the machine’s loud hammering and humming, I felt peaceful.  Much less peaceful was the lumbar puncture (aka spinal tap).  I had one when I was five years old during a bout of encephalitis, and the memory of its penetrating pain had stayed with me throughout the years.  I was disappointed to learn that my memory was not faulty; the procedure felt like the doctor was trying to pull the nerves of my spinal cord out through the needle she’d sunk in my back.  After that, the CT scan and electrical conduction tests (electrical stimuli applied to my hands, feet, and head) were a breeze.  The myriad of tests pointed toward a diagnosis of Transverse Myelitis (you probably knew that already, though, didn’t you?), but I would require several follow-up neurological tests to rule out Multiple Sclerosis. 

The UK Med Center released me on February 25 to Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky for physical therapy.  By the time I left UK, I could move my right leg fairly well, but my left was still immobile and numb.  I couldn’t stand on my own.  I spent a week at Cardinal Hill, regaining feeling in my legs and re-learning how to stand and walk without help.  The staff there was wonderful, but the experience wasn’t a vacation.  The doctors removed my catheter while at UK, but the Cardinal Hill staff had to measure my daily “output” and scan my bladder to make sure it was functioning efficiently.  My stomach was covered with bruises from the Heparin shots I received several times a day to prevent my legs from developing blood clots. 

On March 3, my HMO had determined that I had received enough in-patient medical care and sent me home.  I could shuffle around with a walker and required a chair for the shower.  A week afterward, I went back to my full-time job as a staff associate in the English Department at UK and returned to the class I was teaching, though I needed a wheelchair to get there.

Since then, I have progressed from using a cane to walking with only occasional use of ankle braces (mainly for stability).  I still have some weakness in my left foot, which causes me to limp and prevents me from running, and I struggle with fatigue from walking and general activity.  Despite the challenges, I managed to finish my course work for the Ph.D. in English this semester and plan to take the exams in the fall semester.  My outpatient physical therapy appointments have gone from twice a week to once every three weeks.  Of course, there is no way to tell if I will rehabilitate any further, let alone completely.  There are so many others with TM, though, who suffered much stronger attacks and deal with more physical challenges than I.  I was extremely fortunate to have the constant support of Emily, who rarely left my side throughout my time in both hospitals and rearranged my apartment to make it safer for my impaired walking.  She also filled in for me while I was out of the classroom.  My family and friends, too, were strong sources of encouragement, care, and humor. 

Emily and I are forming a support group for Kentuckians affected by Transverse Myelitis and related neuroimmunologic diseases.  We hope to create a community of encouragement for not only those with TM, but also for the families, friends, and physicians who feel the impact of the disease as well. 

If you are interested in participating in our Kentucky Support Group, please either write me via email at Andy.Johnson@uky.edu or feel free to call at (859)552-5480.