All posts by Teresa

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

A Father’s Love

Family, Marty

Patty with her father Say

I met Patty and the Phommanyvong family just more than a year ago. At that time Patty was still living at a long-term residential facility (aka nursing home). Notwithstanding Patty’s significant care needs, it didn’t seem to make sense for her to be in a nursing home for almost two years, especially when her parents, Say Taylor and Vilay Phommanyvong, very much wanted their daughter to be home. That marked the beginning of my relationship with Patty and her family.

I watched as Patty’s father Say managed his own business (seven days a week, 12-plus hour days), moved his family to a first-floor apartment to accommodate Patty’s needs, negotiated with health care, insurance, legal, and social service agencies about the daily care and needs of his daughter, traveled more than 30 miles several times a week to visit his daughter at the nursing home in Azusa, continued raising his youngest daughter, Katty, and still some how had enough left for his his wife, Vilay.

It’s hard to really imagine the enormous pressures shouldered each and every day by Patty’s family, and yet, throughout all the ups and downs, challenges, disappointments, frustrations and negotiations, Say remains determined to provide his daughter Patty with every possible opportunity he can to support and improve her life today and in the years ahead.

As a political refugee from Laos in the wake of the Vietnam war, Say immigrated to America as a young man who never imagined a life away from his homeland. As many first generation immigrants, Say’s life in America has been filled with challenges, hard work and a belief in his dedication to build a life and future for his family here in California.

It has been a great personal experience to witness Say’s love for his family and  daughter Patty despite what must often seem like insurmountable odds. For Say Taylor there is nothing he won’t do for Patty.

— MS

National Cheer Saftey Foundation

Organizations

National Cheer Safety FoundationThe nation’s premier parent founded cheerleading safety organization, the The nation’s premier parent founded cheerleading safety organization, the National Cheer Safety Foundation is dedicated to raising the bar in cheer safety to reduce injury, disability, and death from cheerleading and assist families affected by catastrophic cheerleading injuries. is dedicated to raising the bar in cheer safety to reduce injury, disability, and death from cheerleading and assist families affected by catastrophic cheerleading injuries.
http://nationalcheersafety.com

Eye-blinks & Eye-gaze

Communication

Patty is non-verbal and communicates through both eye-blinks and eye-gazes.

Below is a video demonstrating how Patty communications with an eye-gaze. In this video Patty is saying “YES.” When Patty says “YES,” she will look to the right (her left).

Get the Flash Player to see this content.

For “NO,” Patty looks to the left and for “YES” she looks to the right, as pictured below:

Patty looks to the left for "NO"
Patty looks to the left for “NO”
Patty looks to the right for "YES"
Patty looks to the right for “YES”

Patty Works with String-Switch for the First Time

Assistive Technology, Communication, Marty, Posts, Switch Access

Patty's right foot with string switch Patty's right foot with AbleNet string switch

5/30/10

Today we introduced Patty to a string-switch (AbleNet) for the first time. For several months we have been exploring switch access with several different types of switches including microswitches, mercury switches, miniswitches, and any switch we could think of that might give Patty access to controlling some cause-and-effect activity. It seems like a simple enough task but with Patty there are so many varibles that can make a difference a sixteenth of an inch one way or another. These things take time.

Well, today was a very big day. We’ve been borrowing switches generously loaned from the Frank D. Lanterman Regional Center’s Family Resource Center and today we tried a string-switch for the first time. It’s so simple I’m now wondering why I didn’t think of it earlier but that’s how these things go. We simply hung the string loop over of Patty’s right foot and toes, mounted the switch an inch or two from her foot and Patty did the rest!

With Patty’s determination and our verbal direction and support, Patty was successfully able to turn on and off a couple battery-adapted devices: one, an insane toy from Chinatown; and the other a radio tuned to a local classical radio station. Take a look at the video to see and hear some wonderful music, literally and most definitely figuratively.

At the end of this video you will also have a chance to see how Patty communicates with an eye-gaze system that she has developed with Teresa. Enjoy!

— Marty

 

Look Up For Yes

Posts, Recommended Reading, Teresa

Look Up For YesHaving awakened from a seven-month coma brought on by two massive strokes in 1966, Julia Tavalaro found herself, at the age of 33, paralyzed and alone in an unfamiliar hospital. Eventually, she was able to reconstruct the moments preceding her first stroke at her home on Long Island, suffering from a terrible headache and trying to soothe her hungry infant. Tavalaro’s enormous capacity to battle devastating misfortune is on display in her memoir, ”Look Up for Yes,” written with the poet Richard Tayson. But her gifts extend beyond a fierce will for self-recognition, for she is also endowed with extraordinary powers of memory and description that enable her to convey her experiences vividly.

Tavalaro’s is a remarkable life story for anyone interested in alternate communication and the great diversity of human intimacy. The book is available at many bookstores as well as Amazon.com: LOOK UP FOR YES