COMMUNICATING WITH PATIENTS EXPERIENCING LOCK-IN SYNDROME

Hi there,

A close friend's father was severely paralyzed after a stroke in Nov 04. It happened suddenly. Fainting spells a couple of days before the stroke and on that faithful day, he just couldn't walk all of a sudden and was slurring. He was sent to a hospital and there, he fell into a coma. Things weren't looking good and his family was told he may not survive the next day. He did survive but upon waking, he was found to be completely paralyzed. he had to be fed through a feeding tube and the only movement he could make was just to blink.

As a friend, there was nothing I could do but pray for a miracle. At the same time, I was doing a lot of reading up on the Internet. One day, the idea of using Morse code to help severely paralyzed patients communicate struck me. Severely paralyzed patients can be said to be experiencing the "lock-in" syndrome. Since he can only blink, perhaps he can blink out a code. I searched through the Internet and realized that there is a little research on helping lock-in patients communicate. However, it usually involves expensive gadgets. I did more research and chanced upon communication boards being used to help patients who cannot speak (but can move their limbs) communicate. I combined the two and came up with communication boards that will help lock-in patients communicate. The Morse code though fast, may be a bit difficult to pick up, so I also designed a colour-coded alphanumeric table and 2 other boards for patients to communicate basic needs and health conditions. Most of these will require the patient to be able to read English.

The communication boards will not benefit many people if it stays with me, so I'm posting it on the internet to be shared with all who have family and friends plagued by the lock-in syndrome.

I believe it's a great deal for such patients to be able to communicate their needs and wishes to their caregivers. But do not be too hopeful when using these boards. The lock-in patients may be experiencing depression and may not respond as expected. My advice is to go slow, be encouraging and never fail to love. As a healthy person, you can never fully understand what it means to lose so much in a short time.

The communication boards require at least one helper to facilitate communication. I've got an idea of a gadget that will allow words to be spelt using the eye gaze method. There is no need for any helper to assist in communication. It's a combination of several technology widely available commercially now. Gadgets performing similar functions currently (those that read brain waves or use a camera to capture eye movement) are costly, complex and hard to learn. My idea's a little simpler but I have no idea how it can be constructed yet. If I ever do find out, I wish I can manufacture these gadgets cheaply, so every hospital can buy plenty of them for all lock-in patients, and caregivers can easily afford to buy it for their loved ones.

Okie. That's it for now.

Download Communication Board (PDF - 141 KB)

Keywords: Augmentative Alternative Communication Boards Non-verbal Stroke Severely Paralyzed Rehabilitation Patients Lock-in Syndrome