Lack of Feeling and Numbness in Parkinson’s

Living this way, with a husband who used to express himself fully, wholeheartedly and clearly, is sometimes painful for me. There are days I wish I handled it all better, and one of these recently happened.

Some people with Parkinson’s have physical symptoms of numbness but I am interested in exploring the way this disorder affects my husband, Andy’s, ability to feel emotions.

One symptom of Parkinson’s is called, “the mask.”

We were with some friends, at their home for dinner and the other couple invited also lived with Parkinson’s. Our hosts gifted us all with a folk rock music concert they performed after dinner. The two men with Parkinson’s sat in upright chairs in front of the makeshift stage and I sat on the side couch with the other woman. She and I both proceeded to overreact to every song, in true enjoyment but also compensation for our husband’s apparent total lack of enthusiasm. They both sat straight faced, appearing bored- not even clapping. What a scene!

The spectrum of facial expressions that flit across a healthy person’s eyes, mouth and forehead are hidden in many Parkinson’s patients. Life becomes a mystery when living with someone who wears that mask. Natural cues are no longer able to be seen in regular life interactions. I find myself asking Andy how he feels about something way too many times in a day, because those cues are absent.

If I share happy news about one of our kids, or something that is a success for me, he often listens with a totally blank facial expression and when I finish he simply turns away. Lately, when I talk with him, either his eyes are closed , because Parkinson’s makes it take effort to hold them open, or he gazes at a spot behind or either side of me instead of catching my eyes and looking at my face. As a healthy woman, it is sometimes hard to remember that his lack of animation and response is not personal towards me.

It feels personal. I often wondered if he still feels the emotions inside his often unresponsive face and body.
I wondered again what Andy is able to feel inside his blank face and still body?
I found out the answer, the hard way.

Living this way, with a husband who used to express himself fully, wholeheartedly and clearly, is sometimes painful for me. There are days I wish I handled it all better, and one of these recently happened.

Andy was sitting on our couch and I was showing him that the book I wrote had passed the first round of editing and was moving forward in the publishing process. I was excited but suddenly felt awash in the sadness of sharing my good news with my husband who expressed nothing.

I began to cry.

“Andy,” I said. “Sometimes  feel so alone here with you. I can’t tell what you feel or if you feel anything at all and I miss you so very much.”

Through my own tears, I saw him reach out to me and taking my hand in his, tears began to roll down his cheeks. I learned he does feel things. It rarely shows and I don’t get any feedback from him, but I know now that inside he does feel emotion.

This knowing is a link towards wellness.

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