Visual Cues to Stimulate a Conversation

The other night was our monthly Huntington’s Disease support group meeting. They are always fun to go to. You get to talk with a bunch of people that an fully appreciate exactly what it is that you are going through on a daily basis in this world of Huntington’s Disease. We often share ideas of how to cope with certain issues as well as offer support to those who may be struggling.

This was one of those time where one of the members shared a really neat idea for connecting with his friend. Steve* and Chris* both enjoy watching a TV show and often like to discuss it afterwards. Of course, since Chris has progressed to the mid – to – late stages of HD, he often has time fully recalling and communicating his thoughts on the show. So, Steve came up with a genius idea to help the conversation along. He watches the show on his tablet and takes screenshots of parts of it to talk to Chris about. Then, when he is with Chris, they scroll through the various screen shots and are able to discuss the show. It is a great conversation starter and it provides visual clues to help Chris recall the moments and communicate about them.

This isn’t the first time I have heard using visual clues for someone with Huntington’s Disease. I have shared previously about something I read once about creating a scrapbook of memories for important events for a person in the later stages of Huntington’s. This allows the person to look through the scrapbook and provides the visual cues to access those memories and talk about them.

We all struggle from time to time communicating something that we want to say. So, we can relate to the struggle that a person with Huntington’s Disease has a continual basis. Most of the time, the memories are still there and the desire to communicate and talk about them is there as well. The problem is the short-circuited brain that no longer has the link to quickly communicate it and talk about it like you and I have.

So, the next time you want to talk about the TV show, consider this technique and see if it will help. I think it is something that I will keep in mind for the future so that Robert and I can talk about some of our favorite shows. But, Robert, please note, I still won’t watch the Walking Dead. Even if it is for a good cause. Maybe you can talk your brother into that one. 

*Names were changed to protect those who may not want to share their diagnosis. 

Putting it In a Different Prespective

I love reading! I read something just about every day for total fun. I am a definite book worm.
I also like to read books that I have read before. I have many books that I have read multiple times. It seems that every time I read a book, I catch something that I missed the last time I read it.

Such is the case with Inside the O'Brien's by Lisa Genova. I just finished reading it for the second time a few days ago. There was a small little portion that really stood out to me. Kind of a wow moment for me.

First, for those of you that have not read this book... It is the story of a family living with Huntington's Disease. It begins with a diagnosis of the dad (Joe) in the family when there was no known history of the disease. Of course, after the diagnosis, it becomes clear that his mom had it and that was her problem when he was young. Throughout the story, the family of 6 - mom, dad and 4 children must deal with the disease. You get a glimpse into how they do it. It is great story for anybody that everybody should read. I thoroughly enjoyed it.

What hit me this time is one small part of it towards the end...

Joe, his two boys and a friend are all at a Red Sox game. Joe is looking around the stadium that has approximately 37,000 people. He has this moment where he can't seem to focus on any of these faces around him when it hits him. The number of people in this stadium is equal to the approximate number of people diagnosed with Huntington's Disease in the country. Yes, a stadium full of faceless people is about the number of people in this world that have Huntington's Disease. Only, to Joe, his family, my family and all the other families dealing with this disease, those are not faceless people. Each one of them has face and an identity and a family around them.

Granted, this stadium of people is small compared to the numbers of people that have cancer or Alzheimer's or ALS or any other number of diseases that a more well known. I know there are so many more people out there that are dealing with these other diseases. I don't mean to diminish them or make them seem insignificant because I know they are not. But, for the family that is living with a diagnosis of Huntington's, that stadium full of people is a significant number.

The other thing is that the number of people that fill that stadium are the ones that have been diagnosed with Huntington's Disease. Not the number of people that are affected by it. Let's be honest here. As anybody with any type of disease can tell you, it is more that just the diagnosed that are affected by it. The family and friends that care for that person are also affected and living with the diagnosis as well. So, in reality, the number of people affected is larger than just the size of the stadium. If you add in the number of people who could potentially be living with the disease but have not yet been diagnosed, the number of people grows to more than just the size of a stadium.

The reality is, even if the number of people who have Huntington's Disease fills Fenway Park or a high school football stadium, it is still too many people. Even if it was only enough to fill the benches at a pee-wee football game, we need to find a cure. We need to stop another family from suffering the way Robert's family has, the way the O'Brien's did or the way the families of those 37.000 in Fenway Park suffer do.