Communication, more than just talking ... an insight to ALS patients from a wife who cares

Someone asked me the other day about how to read Eric's responses to some particular visits and their questions were very valid. As you know, I can read Eric better than anyone. Lately, I tend to play offense and defense for Eric in these areas. He does not talk as much as it does take more effort physically. His smile or nod is often his response or it can be that he is processing his response. He takes longer to reply as well as even trying to articulate what he wants to say takes more time. I have had to learn this as I await his reply. I am usually in a hurry wanting a yes or no answer (this is mostly when I am helping him with a need). But when he has something to say, I stop what I am doing and look at his face as I wait for him to talk to me.

Here's the tough part, most people are social creatures and talking is such a huge part of how we communicate. When we don't get a response, we instantly start to process what is wrong, what are they thinking, are they upset with me? This makes most people uncomfortable so they either talk more or leave the situation. Many people can't understand Eric as well and this takes great effort or interpretation (usually by me). When there is a lot of noise or commotion going on around, this is even harder, of course. This is why we have tended to have less people over and done more one on one visits. Things like watching big sporting events are an exception because these can be events to enjoy together, but even that tends to be a bit much for Eric to to take in. Eric had a lot of fun having everyone over for Super bowl, but couldn't do that all the time like he used to. They say that when you loose one sense, your others are heightened, like when you can't see, you can hear sharper. Eric hasn't necessarily lost a specific sense as much as abilities, but his hearing is sharp as a tack. He hears the mail truck from a mile away and always amazes me on what he can hear that I don't. This can be good, but also bad as he can sit in a room with a lot of things going on like conversations, kids playing or screaming, phones ringing, washing machine going, dog barking and he is on complete overload. We tend to tune in to one thing and block out the others, but Eric is not able to do that. I try to be cautious with this when people are here to keep things more low key and quiet. Those of you who have known Eric, know that he used to be able to do everthing at once and the more people the better, the more going on the better and the louder the music, the better, etc. It's really hard to see Eric this way as it is so different than the way it used to be, but I understand it and want to make things easier for him. It is really part of the disease as the more people I have met or talked to have felt the same way and can relate. This is why I thought I should post this to help you understand the disease and how it affects people. I also want people who do visit to feel comfortable as they understand what Eric is going through better.
To understand what Eric is saying or feeling, you need to look right at him and focus on what he is saying, reading his lips and expressions and be patient for his response (we tend to want to finish other's sentences with what we think they will say and that can be helpful or frustrating). Sometimes he is fine and doesn't have anything to say and sometimes he doesn't say what he wants because there is no pause for his response. Over a year ago, we met a family in Monroe at an ALS skate benefit and the husband had ALS and his speech was affected. His wife and daughter were often finishing his sentences for him which he would nod approval of. When I was talking to him on my own, I felt this draw to look at his face and listen attentively to what he was saying and I was surprised how well I could understand him and respond to him in a kind way. I felt so strongly that he just wanted to be heard and that most people probably brushed him off quickly or looked to his spouse for translation. I was prepared back then for what may come with Eric and what he might feel like when he loses the ability to communicate.
The people who have been around the most are the ones he tends to share more with and they become more comfortable with the changes going on with Eric too.
Sometimes it's OK to come over and just be here with Eric, whether watching a movie, rubbing his aching elbows, back or feet, praying with him, reading a book to him or just giving him a hug or squeezing his hand. We don't always have to talk to show love which is strange for most people, because we are social by nature (me especially) I love to talk!
If you are reading this and feel like, I have never come over to visit, please don't feel like you need to now, know that your prayers, emails and cards are a great way to show your love and support. We are blessed and have wonderful friends and family surrounding us.
Lastly, with the way Eric's chair is driven now, he has a device around his neck that steers his chair. Some people are afraid to hug him as this is in the way. Eric still appreciates hugs as we all need touch. You can ask him if it's OK to hug him and he will let you know if it's safe to give him a squeeze. My mom hugged him once with his chair on and they almost both went for a ride :).
I hope this helps not just to understand what Eric is feeling, but also help you unserstand others with ALS or similar disabilities.
Love,
Lori