Parkinson’s Disease Is a Silent Thief

I read somewhere that Parkinson’s disease robs people of who they were, who they have been, and the person others have known. It affects marriages, too. I read this on the tailcoat of writing about Parkinson’s and the role it can play in the intimacy of marriage.

It’s downright hard living with this little monster. One tries to maintain a sense of normalcy, but that is often difficult when medications decide to “turn off” and stop functioning; when tremors won’t cooperate so a person can write their own name; or when fingers won’t move to tie shoes, button a shirt, hook a bra, or buckle a belt. Put all the physical frustrations together with the cognitive ones, and it can produce one frustrated spouse — either the patient or the caregiver, or both.

Parkinson’s is a thief, indeed. It may rob the person who actually has Parkinson’s, but we also need to remember that it robs the caregiver, too.

I have read or been told many times about a partner of someone with PD who decided to leave the relationship and call it quits. Is that fair? No way. Especially if they had repeated those infamous words, “Till death do us part.” But realistically, it’s not fair for either party. It’s not fair for the one with PD or their partner, who finds themselves having to care for a spouse in ways they hadn’t anticipated in the “happily ever after.”

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Life can seem unfair. People change with or without a disease. They bottle things up and refuse to talk about whatever is ailing them, eventually making things appear far worse than they really may be. They think the only way to be free from the perceived culprit that vies for their happiness is to turn around so they don’t have to face it anymore. The problem? They often don’t head into anything better. 

A key component of a good marriage is communication. When dealing with a chronic illness, it is even more important. It’s critical for both partners to talk about how they feel and how the disease affects them.

Following are some suggestions on how to do that:

•  Take time out regularly to talk to each other. Find a neutral spot to do it. 
•  Turn off the television for one hour a day and read to each other, play a game, or do a puzzle, if possible.
•  Bring back dating in your relationship. If you are unable to go to a coffee shop or some other place easily, set a regular time each week to gather at the kitchen table for coffee and cookies.
•  Sit out on the front porch and watch people.
•  Hold hands.
•  Try to have a greater understanding of each other. Get some counseling to get through the tough times.

Don’t give up. There will be better days, better moments. Those are the times we live for, the times that make us want to hold on.

When I was married 39 years ago, my pastor told me that when he married couples, God tied a knot in the relationship, and the harder we pulled against one another, the stronger and tighter the knot would become. Parkinson’s is one thing in our marital relationships that can tighten that knot — if we hold on and let it.

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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 Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.