On our way home from the East Coast we stopped for another visit with our friend who was a doctor. She and Priscilla went shopping. The progression in Priscilla’s symptoms was obvious as she struggled to get around the malls. “You’ve really gone downhill in the past two months,” observed our friend, with some alarm. Maybe this wasn’t just a combination of minor, treatable conditions.
We had only two days back in town before we’d have to travel again, to the funeral of a great-aunt. (Priscilla was the relative who’d lived closest and she’d been her family advocate.) On the first of these days she had a physical therapy evaluation and was assigned for future appointments to a therapist who specialized in neurology patients. On the second day she had her visual evoked potential (VEP) test at the neurologist’s office. That same evening we headed back out on the road.
We stayed with some other good friends who lived less than an hour from where the funeral would be held. They had a loft guest room that was reached by a steep staircase. We carefully planned our bedtime routine so that Priscilla would only have to climb it once. Priscilla read the Scriptures at the funeral, leaning on the podium for support, and at the cemetery she had to hold onto me to walk safely over the uneven ground.
Upon our return, Priscilla was scheduled to see her new physical therapist twice a week. But the treatment had to be suspended after only three sessions. It had been prescribed to try to strengthen her muscles, but because her condition was so unstable and still undiagnosed, the therapist became concerned that working the muscles could actually damage them instead. But she did show us how to do range-of-motion exercises (ROMs) at home that would keep Priscilla’s joints from painfully locking up. In one form or another, we would do ROMs every day for the next three and a half years.
We then made a four-day trip to Nashville to do premarital counseling with a Grad IV alumni couple whose wedding I’d be performing in the fall. They lived in a more distant city and we were meeting halfway, hosted by some mutual friends. When we got back home we had one day to catch up on life before Priscilla spent three days arranging flowers for the wedding I’d be performing that weekend of another Grad IV couple. This was a joyous occasion, the kind of thing we were in this ministry for, but I also noted in my journal that Priscilla was “very tired and staggering badly” by the end of the cake-and-punch reception.
Weekend festivities over, we saw the neurologist on Monday. He started by telling us that Priscilla’s VEP was normal. Together with the absence of lesions on her brain or spinal cord, this seemed to rule out MS pretty definitively. So he did an electromyogram (EMG) to check for any neuromuscular disease such as ALS.
Priscilla described this test as “medieval torture.” It involved first running electrical current between electrodes attached to her legs at various points to check nerve conductivity. Next, the neurologist stuck needles deep into her muscles to measure their electrical activity. She screamed aloud in pain for much of the test. But its results, too, were normal, and perhaps that knowledge was worth the price of admission. (“At least you’ll never have to do that again,” I told her afterwards.)
This seemed to leave on the table only the neurologist’s theory about latent effects from a car accident twelve years earlier. “We had those reports sent to you,” we assured him, and he got his staff to bring him the records. He started paging through them, but he stopped when he got to a CAT scan report. It showed and stated clearly that while Priscilla had suffered the compression fracture of a vertebra, there had been no evidence of any spinal involvement. He crunched the report up into a ball and tossed it into a nearby trash can. “Well,” he said, “that’s that.”
He announced that he was unable to diagnose and asked us whether we’d like to be referred to a more specialized hospital for further investigation. He suggested the Mayo Clinic, the Cleveland Clinic, or the University of Michigan. We chose the last option because it was the closest, and because the university hospital was nationally renowned for its neurology department.
Priscilla turned around on her way out the door and looked ominously across the exam room at a framed photograph the doctor had hung on the wall. It was of the great Yankees slugger Lou Gehrig, whose name has unfortunately become synonymous with ALS. The doctor followed her gaze and guessed her concerns. “Don’t worry,” he said, “you don’t have Lou Gehrig’s disease.”