One Family's Way

By Monica Bradlee

Sharing ideas is an excellent way to help others...

This note is about sharing an idea my family used, so that we could continue to communicate with my father as his HD progressed. It is a simple suggestion. Hope you can use it and that you find it helpful.

As my father's speech worsened, we looked for ways to figure out what he was asking us for. Sometimes we all were very frustrated. It was also frustrating for the staff at the hospital. So what were we to do???

We decided to put words and pictures on pieces of cardboard and seal them in plastic. The words were written in large letters, so he could read them. The pictures were of things that he would need everyday. Only one word or one picture was glued to a piece of cardboard. This was done to prevent confusion over which word or picture he was pointing to.

Some Examples:

After the pictures and words were glued to the cardboard and sealed in plastic, we punched holes in them and bound them in a hard cover looseleaf notebook. Using a looseleaf notebook meant we could add words or pictures that we might not have thought of when we first began this project. We used a vinyl covered looseleaf notebook because it was washable.

It is also wise to make this book as simple and with as few pages as possible. Remember that turning a page and looking for the right word can cause frustration. If you add a word, add it at the end. In other words, try to keep things simple and in the same order, because change can often be difficult and confusing.

The most important thing to note is that we included my father in this project. He helped pick the pictures and the words.

Converted to HTML by Renette Davis with permission from the author Monica Bradlee, whose father had Huntington's Disease. Send comments for Renette by clicking here and comments for Monica to:

Last updated: Nov. 15, 2010