Communicating with GBS patients unable to talk or write

    • Anonymous
      October 23, 2009 at 3:06 am

      I am relatively new to the forum (GBS onset in Oct 2007) so this topic may have been covered by others awhile back. However, I just recently read about others having had difficulty in communicating (for example by blinking) when on a respirator and totally paralyzed.

      I am attaching a chart we used which was shown to us by a speech therapist (I hope this works, it is the first time I am trying an attachment). It was fantastic. With two movements of the eyes I was able to select any letter and my family, friends and some of the nurses picked this up quite easily. I used this for about 6 weeks until I was able to write a bit with the help of others.

      Designing the chart:

      Get a poster size board that is rigid, easy to hold with one hand, but large enough so that when the patient is looking at one of the sections, it is easy to tell which one it is.

      Make five sections, 4 in the corners and 1 in the middle. The idea is for each to be far apart from one another. Each section has 5 letters and a color associated with it. The upper left corner is the blue corner, for example. Make the letters as large as possible and also make a thick line or a box of the color so it is also obvious.

      You will note that the letter Z is missing. As the chart can take only 25 letters easily we decided to leave that one off as it is rarely used. While ‘X’ is also rarely used, it is used for ‘oxygen’ which can be important for GBS patients.

      You can choose any 5 colors you wish.

      Using the chart

      With two movements of the eyes, any letter can be communicated by the patient.

      Stand off to the side or behind the chart and hold it with one hand.

      First, ask the patient where is the letter they want. They will look at one of the 5 sections. So you then know it is one of the 5 letters in that section.

      Second, ask the patient what color they want. They again look at one of the sections for the color that matches the color of the letter in that group.

      You then mention the letter out loud and get confirmation from the patient.

      Examples: the patient looks to the upper left corner for the letter and the upper right hand corner for the color. This means the letter ‘B’ as it is in the upper left for the letter and is the red letter there, which corresponds to the color in the upper right hand corner. Looking first in the lower left and then the middle means the letter ‘O’.