It came on very slowly, first the stiffness, along with more spasticity, making different movements more difficult.
I’m a “fake quad,” an incomplete C5-6 with enough muscle sparing and leg strength to stand and do some crutch walking, but the spasticity made both much more challenging. While in my wheelchair, my legs would shoot straight out of the footrest straps and trigger spasms in my trunk strong enough to straighten my entire body, occasionally sliding me out of my chair. Transferring to my handcycle became all but impossible — I found myself on the floor or ground all too often. Getting up to sitting in bed was harder, and often the spasms were strong enough to lay me back down. Then my posture began to deteriorate and the hours of computer work grew more exhausting. Transfers, ramps and wheeling in general all got harder. Pain and fatigue came on more quickly, and I just couldn’t do all that I used to do.
Friends and professionals told me this was what 60 felt like. That stung, but didn’t sound unreasonable.
I saw my doc about the spasticity and tried baclofen, upping the dose until I needed naps, then tried dantrolene, then the two in combination, all to little avail. I took enough ibuprofen to give myself an ulcer, but not enough to kill the pain. MRI results failed to raise any red flags.
In January 2008, three years or so after this all began, I got a full re-evaluation (my first in a dozen years), muscle/sensory testing and another MRI. I was also referred to Scott Falci, a neurosurgeon at Denver’s Craig Hospital, who specializes in untethering surgeries of the s