Sunday, March 9, 2014

Sunday Stroke Survival ~Read My Lips

 For me post stroke it was an imperative that I form words correctly even if the sound wasn't right. My husband is deaf and reads lips. It was going to be the only way we could communicate short of our own limited version of sign language.

With my stroke came aphasia. I had extreme difficulty forming and saying words. In fact I couldn't vocalize anything except for guttural sounds.

Now imagine you are having a stroke or had a stroke with a very droopy face trying to form the words, "I need help!" to a deaf spouse who reads lips. That was me almost two years ago. My mouth couldn't form the words right for him to understand. I had to call my daughters to get help. Even though my speech was badly slurred and staggered they knew something was wrong and came running to my aid.

I spent hours in my hospital bed, with the speech therapists, and a mirror forming letters before I came home. I practiced in front of that little mirror every chance I got. Granted mine was a unique situation. I had to make myself understood one way or other. In the hospital, there was one nurse who understood sign language which helped immensely. While I am well versed in signing, my husband never learned. I was thankful that I remembered how to sign for basic needs because my facial expressions were still in the relearning stage.

Still coming home and communicating with my lip reading husband wasn't easy. There was a lot of trials, errors, and repeating that went on the first month home. He had to learn my new mouth movements. Now after over eighteen months of being home, we've reached a happy medium of communicating. About 90% understandable speech.  I still have to repeat myself which gets aggravating, but at least we are working through my aphasia and his deafness.

Accents, the way people speak, the formation of words can look differently to a person who reads lips. It all depends on what you've been accustomed to. For my husband, I will test whoever is going to talk to him that day with twenty words, repeating them after me so my husband can get acclimated to the way they speak. After that it's up to them to pronounce their words so he can understand them. If he doesn't understand he will look to me and I will either a repeat or further make him understand. With the revolving door of aides and nurses with hospice, this is a challenge. I always try to be present when a new one comes in for the first couple visits. So if you think reading lips is easy, think again. By the same token when I am struggling with a word he will supply it.

For examples- Our #2 daughter barely opens her mouth when she talks. She doesn't mumble but her lips barely move. This is in part due to rheumatoid arthritis in her jaw. When she talks to him it's an extravagant speech and lip movement for her just so he can understand her. Our #3 daughter speaks in deafening tones which he catches every second word or so. I can't make her understand that it is the way her lips moves versus volume that he hears. Our #4 daughter speaks loud and fast, and is very animated.  Our #1 daughter speaks  slowly and clearly. He understands them perfectly. The 1st one because he is able to read her lips and the 4th one because of her animated speech fills in the gaps of what he doesn't catch. Interestingly enough in the picture- #2 and #3 daughters are on my left, and #1 and #4 daughters are on my right. They have all learned to get him to focus on their face when they are talking to him.

I remember my then six-month old grandson emulating me as I sat in my wheelchair in the hospital. Today he speaks loud and clear with a vocabulary of a 4-year old at 2 years old. Forming sounds with your lips is half the battle in communicating. Me, I speak well enough to make myself understood. There are lags in my sentences as I struggle to find words and think how to pronounce them, but not as much as a year ago. I'm healing and relearning to communicate each and every day. The aphasia is easing its grip on me as time passes and I realize how lucky I am. But if it had not been an imperative that I formed words for my lip reading husband who knows if I'd had recovered so fast. I'll take that blessing.

Nothing is impossible with determination.

5 comments:

Zan Marie said...

Your persistence is always an inspiration, Jo!

Barb Polan said...

Wow!! You just have to do it the hard way, don't you?

J.L. Murphey said...

Zan Marie- thank you

Barb- you know me. lol

Nick Wilford said...

Seems like there's a reason for everything - good way to look at it.

J.L. Murphey said...

Nick,
There is always something good to focus on even with death. I know you are still in the throes of mourning Andrew. Glad to see you back. The problem is searching for it.