Do I Look Normal?

The idea for today’s post came from this article from Brain and Life. It is written in first person which gives us insight into how our loved one might be thinking.

I remember the first time I was embarrassed for my husband in public. It was in the first 5 years since his diagnosis of Parkinson’s Disease, and we were at a public restaurant. Dyskinesia set in, and he was moving uncontrollably while seated across from me. He leaned toward me and asked, “Do I look normal?”

He looked like some of the footage we see of Michael J. Fox when he is experiencing dyskinesia which makes it look like he cannot sit still. This can happen with a burst of carbidopa/levodopa, which is the leading drug to control the symptoms of Parkinson’s. (That is a simplified explanation. More on that another day.)

But back to hubby’s question. For many years he could mostly mask the symptoms of Parkinson’s, but they did begin to cause necessary changes in his life. When he was still working post diagnosis, he shuffled his feet as he walked from office to office at work. He had to concentrate to control that so he did not call attention to himself.

As the disease progressed, he realized that he had trouble carrying things while walking at work. If he wanted to carry a drink, he had to be sure it had a lid, and filling it only half full was safer than totally filled. Eventually he had to leave his drink behind, but he could manage a pad of paper.

There were some things we would normally do with one hand that he had to do with 2. That made the shaking less noticeable.  He wanted to appear as normal as possible, keeping his symptoms hidden, even though his coworkers knew he had Parkinson’s, so he kept adapting.

When the affects of the disease made work too difficult, he retired on disability, ready to enjoy his time at home. And he did enjoy many good years researching and writing at home. In that period of his life, he could forget about having a disease and just enjoy his freedom to create. He didn’t have to hide anything or mask his symptoms.

This was true for the first 19 years of his life with PD. Then I remember the day he said to me, “Well, I guess I can’t hide the fact that I have PD anymore, can I?”

I wanted to reply with, “You are delusional if you think you have been hiding it all along!” But, of course, I didn’t.

Instead, I smiled and said, “Have you been trying to fool people all these years?”

When I think of normal in the context of chronic and degenerative disease, I believe that whatever life looks like today, is today’s normal. Life is always changing, so tomorrow may be a new normal, and that is okay. We just adapt. That’s who we are. Caregivers. Adapters.

Thanks for reading, and have a great week ahead.

Published by parkinsonscare

I'm a retired mathematics teacher, mother, and grandmother. I cared for my husband for 23 years, and now he is in Heaven. My new mission in life is to support and encourage caregivers like you!

20 thoughts on “Do I Look Normal?

  1. My heart aches s little as I read your post. Our wonderful husband’s have been fighters. Straining every day to keep going and keep looking at the prize. Thank you.

    Liked by 3 people

  2. One of the symptoms that affected us the most was the “stone face”. Before Bill was diagnosed, our daughter would often run to her room upset that Dad hated her because he wasn’t smiling. The night before he was diagnosed, we had actually argued about it. Parkinson’s people often think they are smiling, but it doesn’t show. For years I would kick Bill under the table to remind him to smile so others could see it.

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  3. You like me, because you were so close you could tell. I suppose that part of my coping mechanism is to ignore her motion. My Cheryl has a fidgety motion when her carb/leva kicks in suddenly. But like her mother she was very good at hiding her difficulty. (Her mother was virtually blind due to macular degeneration but Elaine was very good at hiding that from others.) It has only been recently that our children have come to understand the difficulties that their mom (and dad) deal(s) with on a daily (and hourly) basis. I did not recognize her early difficulties until we were taking a walk one day — I thought she might be having a stroke. Please keep writing your stories about your husband. Many times your stories are similar to mine. It is so good to know that our experiences are not unique – it can be shared with others. I hope each day is a little better for you since your husband’s passing. Godspeed to you.

    Liked by 2 people

  4. My hubby drools a lot of the time. I just tell him that he is leaking and hand him a tissue. He wipes his mouth, chin, and we move along.This is our normal and I try to make a no big deal of it. Humor helps bad situations a lot lighter too. During hard situations, I ask him who is going to win.. evil Mr. Parkinson’s or him. He replies him and the fight continues. We can handle anything together with God’s help. Thank you for helping us see “normal”. Hugs.

    Liked by 1 person

  5. Cheryl, you are so right! Normal … I as a caregiver don’t feel normal sometimes from day to day. Life happens and things change in a second for all of us. Normal for whom? Perhaps it is subjective, as I’ve said to my husband on occasion, “this is perfectly normal for you, not to worry!” Thank you for continuing to post, Cheryl, and being my inspiration!

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    1. I like that response. It seems like every week there is a “new normal” until there is another “newer normal!” Right? Why fight it? Let’s just embrace it. You are so welcome, my friend. I’m just glad I have found a community who understands.

      Liked by 1 person

  6. Those are tough words to read but it reminds me that some things we must embrace (even if it’s over time) and rely on God’s plans…Amazing if we think of normal through the eyes and heart of Jesus.

    Liked by 2 people

    1. I love that thought – Amazing if we think of normal through the eyes and heart of Jesus. Let’s pray for eyes to see EVERYTHING through the eyes and heart of Jesus. That would eliminate so much of the evil in this world. Hugs to you, my friend.

      Liked by 2 people

  7. Oh Cheryl, how heartbreaking when your husband asked if he looked normal. How many occasions you must have had to swallow that lump in your throat and not let your emotions of love for your husband and your sadness for him overwhelm you in front of him. I feel that God kept track of every time, though, and He has a special reward for you as your cared for Carlton so extremely well. You are such a blessing!

    Liked by 1 person

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