When the spring sunshine finally enticed us outside, we returned to our ¾-mile loop. Even with practice, his awkward patterns were stuck on repeat, with no apparent way to break the cycle. In brainstorming sessions with the therapy team at the Regional Therapy Center, we discussed various strategies, particularly the benefits of an ankle-foot brace. We expanded our exploration to seeking input from an Orthotist, a specialist in bracing and devices to facilitate function.

Matt underwent a thorough assessment of his spasticity, range of motion, and gait. Mike and I expanded on his medical history, shared our observations, and discussed different types of support. We decided on a custom-made neurophysiological ankle-foot orthotic (NP-AFO) system. The goal was to refine sensory feedback—improving his "internal GPS" (proprioception)—to reduce abnormal tone and support normal alignment throughout the leg, not just of the ankle. Physical therapy and home efforts would be instrumental in maximizing its effectiveness.

The device, a snazzy combination of black and Kelly green high-temperature polypropylene plastic, arrived in June. It was molded to the front of his lower leg, had an attached foot plate, and was secured with Velcro and inserted into his sneaker. Learning to move correctly with it involved trial and error and many grumbles. Matt didn’t like it, and in time, neither did we.

We remain vigilant and attentive to inherent risks when walking long distances in our peaceful neighborhood or in crowded spaces like churches and grocery stores. However, elsewhere, we unwittingly lowered our defenses as his newfound freedom—and ours—grew. We downplayed obvious red flags, such as the danger of his inconsistent performance. We also minimized the implications of Matt’s tendency to "cruise" furniture, walls, or fixtures by not accounting for situations without additional support. We gambled that his ability to compensate could reliably predict his future execution. In July 2019, the gamble failed: Matt suffered a series of falls when he tried activities slightly outside the norm, such as playing mini-golf or trying to get on a rowing machine. These moments served as sobering reminders that ‘normal’ is a fragile state, and a catastrophic setback lurks if we aren’t careful.

With the passage of time, I sometimes question why it’s taking so long to reclaim his self-awareness—from the simple to the risky—even when I know it’s a symptom of a larger disconnect. For instance, he may stop three times to retie his shoe during a single trip in the neighborhood. Or, that inevitably, his right-sided neglect and visual loss cause him to cut corners so close that he nearly clips the large entertainment center, turning into the living room, without recollection. In public spaces, he cuts people off, or worse yet, after passing through an open door, he releases it and nearly clocks an unsuspecting person trailing close behind. Then, I pause and scold myself when his posture and gait worsen because I’ve pushed speed or distance too far.

Our struggles and successes continue to humble me. I must set aside what perplexes me and focus entirely on celebrating every emerging capability I see. I vividly remember when Matt couldn’t climb two or three steps without touching a handrail, and it took him 50 minutes to labor around the small loop with a wheeled walker—or 70 minutes with a quad cane. Back then, it seemed like an eternity as my biceps screamed for mercy while I struggled to hold his weight. With this perspective in mind, I feel deeply grateful for how far we have come and hopeful about better days ahead.