Sometimes it goes slow, very slow. Some days it just seems like the sun won’t shine. And then there are days when everything finds its place and for a few short moments there is hope. These last moments are the ones worth holding onto. I shared one such moment this weekend.

Once a week, mostly on Sundays, I meet up with Teresa Burkett Bourgoise to visit Patty. Words cannot express adequately the truly wonderful relationship that Teresa and Patty share together. It is remarkable in every way. I get to watch and try to help as best I can. Mostly, I just watch.

This weekend, on Saturday, I arrived at the Phommanyvong apartment just after Teresa. I said hello to the day nurse, and ducked into Patty’s bedroom. Teresa was settling in and pulling out a hodge-podge of tools, gadgets, toys and assorted items that might serve alternate purposes in our efforts to help Patty find and develop a communication system that will allow her to clearly and consistently share her thoughts, desires, protests, hopes, fears and maybe even a dream or two.

On this day, Teresa brought along a customized mount for the switch Patty’s been working with over the last several months. Finding the right mount can determine success or failure and there are a lot of ways to get it wrong. We’ve been struggling as best we can with some success but still a lot of struggling. Teresa—who use to work in the movie business making “monsters”—knows a thing or two about materials such as foam, Plexiglas, Velcro, and a thousand other bits and pieces of this and that. Definitely a good person to know, and very, very creative.

Well, the video tells the story much better than I. The tools Teresa customized—following months and god knows how many hours—are remarkable in so many ways. Most importantly, they work and seem to offer Patty the access she will need to master single-switch access.

I’ve been down this road before and can’t tell you how exciting it was to be in the room when Patty started to activate the switch and turn on the radio with her right foot. Take a look for yourself.

It was Patty’s hard work, Teresa’s insightful genius, and my good fortune to be along for the ride.

— MS

For several months Patty has been working hard on accessing a single switch with her right foot. Patty’s progress has been reported on this blog. There are so many variables—some obvious and some not so obvious—that are part of the mix: the tightness throughout Patty’s muscles and body, Patty’s medication, Patty’s vision, Patty’s positioning in bed or in her wheelchair, the temperature of the room, Patty’s mood, the technology, Patty’s breathing, and more.

Teresa and I are working with Patty but are only permitted to visit during weekends. Patty’s life and schedule is such that more regular visits are difficult to accommodate by her family. So we are all struggling to master what is a delicate and difficult task with very little time to practice. The switch access strategy is all tied to the goal of providing Patty with enough control so as to independently demonstrate her receptive language and cognitive ability by accessing a single switch that when connected to a device and then activated would indicate a simple choice between a “Yes” and a “No.” To achieve this goal would redefine the quality of Patty’s life in so many ways.

And it is becoming increasing clear that Patty needs more practice on a regular and daily basis. We will be working closely with Patty’s family to build a daily routine that will give Patty the opportunity to master her switch control, one day, one muscle, one switch at a time.

— MS