The Many Masks We Wear With Parkinson’s Disease

Who knew a year ago that our accessories would include face masks? We wear them to protect one another.

For some of us with Parkinson’s disease, this mask protects us, but it hides another — the Parkinson’s mask.

This mask is not an accessory. It’s a symptom that makes facial expressions difficult. It’s frustrating and is often misunderstood as disinterest, especially if it brings its friend, a softer voice.

In Parkinson’s, the same muscle stiffness that occurs throughout the body also occurs in the face, neck, and throat, which means more exercise! I was familiar with the Lee Silverman Voice Treatment, but I wanted an additional program. My search led me to Let’s FACE It Together, an exercise program to strengthen facial muscles. As an added bonus, it fights wrinkles.

On a recent road trip from Pennsylvania to North Carolina, my husband, Mike, and I decided to give it a try. Pretty soon, we were saying, “EEEE” and “EWW” while contorting our faces. This exercise was followed by another in which our faces became ridiculous caricatures of chipmunk cheeks. But we laughed, had a nice time, and felt good about it. (The chipmunks and humans we drove by may have been mocking us, but who cares!)

Parkinson’s other masks

This raises the question: Are there more Parkinson’s masks? The answer is a resounding yes! We create them for ourselves and choose which one to wear. They are the masks of perception.

What do I want others to see? Or more importantly, what don’t I want them to see?

It’s exhausting to put on the “I am doing well” mask and keep it on as I go about my day. However, I do the best I can to wear it and keep the other masks hidden. I don’t want those around me to see the battle raging inside or the enemy I am facing. I hope to avoid awkward conversations and the “puppy dog eyes.”

But what about our loved ones that we want to protect? What do we want them to see? They are our support system. Can we hide behind the mask from those who know us the best? More importantly, should we?

I have stopped trying. Despite what others see all day, Mike cannot be fooled. He knows when I am “not good,” and then it is time to take off the mask. I am safe, and I have nothing to hide. I can be unapologetically me — exhausted and tired, but that’s OK.

We all have our masks. Parkinson’s or not, we choose which version of ourselves to share with others. Just remember, the next time you find yourself in the car, make fishy faces. You will be exercising and it might make someone else smile. It’s a win all around.

A note from Mike: “[Lori] does fool me sometimes, but I truly understand the challenge. My best to all of you, and your families. Fight the good fight!”

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.