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Tweak, Tweak, Tweak

Assistive Technology, Marty, Patty Updates..., Switch Access

String-Switch-Adaptation

A lot has been happening (or not happening) in Patty’s world depending upon one’s point of view. This photo was taken today by Teresa B. and it shows a “tweak” Teresa fashioned to help stabalize the switch Patty uses with her feet. As mentioned elsewhere on this blog, a switch strategy is part of Patty’s overall communication rehabilitation. I don’t think I’ve ever used that term—communication rehabilitation—but it seems to fit. When Patty activates the switch with her foot it communicates sooooooo much.

First, the switch is evidence of Patty’s receptive language—her ability to hear, understand and respond to her environment. By accessing and activating the single-switch in a conversation, Patty is pretty much telling us that she’s in the room and certainly part of the conversation. Teresa B. has been Patty’s friend, advocate and guide throughout  this long communication journey. The photo is just another tweak up Teresa B.’s long sleeve. Talk about creative arts.

So that’s the latest good news. The rest pivots upon who understands and believes in Patty’s recovery. Initially, recognizing the magnitude of Patty’s efforts may not be immediately apparent. It takes time, is often subtle, and sometimes may even require a bit of faith. It’s certainly not obvious in a brief medical examination or consultation when time is driving everything—including quality of life issues. And yet, the time it may take hardly diminishes the reality and significance of Patty’s efforts and achievements.

Recently, the videos on this blog, recording Patty’s effort and progress, were characterized as a “trick” and not to be believed. The injustice and unfairness of such a statement is tragic and I’m still trying to figure out how to digest that one. Patty certainly deserves more, far more.

—MS

More Switch Practice

Assistive Technology, Marty, Switch Access




It was a late Sunday afternoon and Patty was feeling better than the weekend before. She was alert despite the lingering stuffiness of a stubborn head cold. We talked for about 20 minutes before her switch practice. My communication with Patty needs regular and ongoing practice. I’m getting better but communication with eye-blinks and eye-gaze takes a long time to develop and trust.

In this video, Patty demonstrates her switch progress. She still doesn’t have enough opportunities to practice yet continues her progress. This video captures her progress while demonstrating a four step sequence:

  1. Imagine a picture of your foot in your mind.
  2. Take a deep breadth.
  3. Release your breadth and move your foot.
  4. Relax your foot to reset the switch.

Patty’s Switch Adventure

Assistive Technology, Marty, Posts, Support, Switch Access

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

Patty—Three Years Later

Posts, Teresa

Patty Phommanyvong and cheerleader friend

Today is the third anniversary of Patty’s injury.

And on this day, while in Texas, I happened to meet a tour guide whose daughter, Katy, had contracted traumatic brain injury (also three years ago) while swerving her car to avoid dogs that had wandered onto the freeway.

Katy Munson’s injuries mirror Patty’s: the contracted limbs, (her feet having had the same surgery to sever her Achilles tendons as Patty had), her limited motor coordination, and her nonverbal communication with eye-blinks. In an intense 15 minute conversation we covered topics that included physical therapy, augmentative communication devices, nursing home care, ICU care, community support, and the disbelief of the doctors in a daughter’s cognition and a mother’s knowing.  Our words couldn’t spill out fast enough.

What I saw in Katy’s mother Cindy was the unwavering belief that not only could Katy get better, but she would get better.  This belief is shared by Katy’s father who is helping his daughter learn to walk again–while Katy is harnessed into the Dynogate walker, her father places her feet atop his as he inches forward, challenging her muscles and brain to mimic his steady moves.

Although this site is dedicated to Patty’s progress, perhaps we should take this moment to acknowledge all the selfless parents who lift their children up, one slow step at a time, and to their sons and daughters who do all they can to keep moving forward with their parent’s loving support.

— TB

Wish the world had been watching on Saturday

Posts, Support, Teresa

Teresa and Patty

Contrasts sometimes occur in Patty’s ability to perform from week to week–wide contrasts.  Last week, after Patty began her new school year, she complained of headache, left earache, and rash.  (It’s not unusual for her to become ill during the first weeks of school with exposure to new people and surroundings.)  Her energy level last Saturday was sluggish, and in lieu of working with switches on Sunday, she watched the film “Napoleon Dynamite”.

Today Patty activated the switches like a seasoned pro.  There was a delay of only a few seconds (and sometimes none at all) between the time when she was asked to activate the switch and when she turned the radio on with her foot.  Patty has a wonderful nurse, ZeeZee, who stays with her every other Saturday and Sunday.  With ZeeZee’s applause and encouragement, Patty smiled as she showed us what she was capable of–intense determination and focus.  In addition, Patty moved her right arm  on cue after a brief range of motion stretch. She also worked to roll her body from a side position onto her back with relative ease, considering she’d not tried that move since her tenure at the nursing home.

What we’ve learned from Patty over the past years is that when there are times she disappoints in her performance, she will rebound with exuberance the next.  It is that effort keeps us inspired and returning to help her again and again…and happily again.

– TB

How Many People Does It Take to Activate A Switch?

Assistive Technology, Marty, Posts, Support, Switch Access

Patty & Marty

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

Simple and Not-So-Simple Switch Access

Assistive Technology, Marty, Posts, Switch Access

For several months Patty has been working on switch access which is a simple strategy allowing Patty to control devices by activating a switch. While the strategy is relatively simple, the physical task for Patty is like climbing Mt. Everest without a map in a snow storm at midnight. It’s a very steep climb.

Why switch access? Because it is an initial step towards giving Patty the opportunity to communicate more clearly with family, friends, health care professionals, service coordinators, lawyers, and more. A single switch can control a radio, a light and even a basic communication device that would give voice to a simple yet powerful “YES” or “NO.”

For most people, meeting Patty for the first time can be overwhelming. Patty has suffered a tragic injury and is on a long road toward recovery. What she has lost is dramatically apparent and her needs are significant. What Patty understands and how she is feeling is not easily understood and it can take weeks, even months to begin to read the eye blinks and gazes she currently uses to communicate.

Patty is working on controlling simple battery-adapted devices (e.g. radio, light switch, fan, etc.) with a string switch attached to her right foot. Patty’s legs, feet, arms and hands muscles are extremely tight  and Patty must consciously direct her mind to move her right foot far enough to activate the switch.

Patty has made significant progress to date but we are all still at the beginning. We are hoping to increase the opportunities for Patty to practice on a daily basis to give her the ongoing and consistent practice she will need to master her switch control.

Here are some photos of the switch setup:

String switch attached to Patty's right foot
Patty’s right foot accessing a string switch
Switch mounting system
A switch mounting system holding the string switch in position
Linkswitch Control
A Linkswitch that provides a range of switch access options
Radio connected to Linkswitch
A simple wire connection between the battery-adapted radio and the Linkswitch
Battery-adapted radio
Battery-adapted radio
Switch Access Connected
In a line: radio > Linkswitch > string switch