When I had my first EMG test, my neurologist looked at the initial results and remarked, “this is bad, very bad.” I had no conduction below the knees, and very slow conduction along my ulnar nerve, which controls the pinky finger. I was beginning to resign myself to using a walker and putting up with diminished control of my hands. We talked about moving into an ADA apartment, having a car converted for hand controls, Having no control of my feet and ankles meant that my feet pretty much just pointed toward the floor when I picked them up – I was unable to pull them up against gravity. Nothing much changed for almost two weeks after the test, although at least couple times a day I would wiggle my toes as much as I could and try to move my ankles, because I had no way of knowing whether things were working without trying.
After a couple weeks, though, I started noticing that my toes were moving further than they previously were able. So I pushed harder. The more I wiggled my toes, the further they moved. The more they moved, the more I was encouraged. And one night, at the end of a long day of physical therapy, work, taking care of Baby Loco and shambling around on my walker, my ankles started responding. I knew that, EMG results notwithstanding, I would walk again.
At the next physical therapy session, I tried walking with a cane. It was surprisingly easy and felt much more natural than the walker. I was sold – I wanted to be rid of the walker, so I ordered a cane (and a couple books for Baby Loco’s birthday so I could get free shipping). It was delivered the next day (I love Amazon Prime). I practiced using the cane around the house and at the office for a couple days and managed to not fall on my face, so I decided to ditch the walker completely. Since then, I’ve been get stronger steadily. I take the stairs instead of the elevator when I have meetings at work, I can cook simple meals at home and generally move about independently.
We returned to the neurologist for a follow-up on the EMG test expecting to surprise him with my progress. If he was surprised, he didn’t show it at all. He ordered more IVIG infusions, to be delivered at home once a week. At present, this is still pending authorization by our insurance carrier.
I am often reminded of how lucky I am. I have a loving and doting wife who has supported me and taken care of my needs. My GBS was turned around before I needed to be put on a ventilator and I’ve generally made good progress towards recovery. The support of friends and neighbors has been overwhelming.