A Parkinson’s Disease Problem, or a Me Problem?

Sometimes I treat my husband, Arman, like a child. Actually, more like a baby.

It’s not because this is my nature; quite the opposite. Although I did baby our youngest child, Jake, a bit (of course), it was only because I just loved holding on to the feeling of being needed, as well as the yummy baby stage. As a parent, the ultimate goal is to raise kids to fly (words of wisdom my older sister once told me), and we’ve successfully accomplished that with our three children.

So why would I ever treat my 51-year-old husband like a child or baby? That seems unnatural. Allow me to explain.

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He is a fall risk. Sure, everyone with Parkinson’s disease (PD) falls sometimes, right? Well, yes, they do. His unprovoked retropulsions, which contribute to his loss of balance in a backward direction, can surprise us at any moment without any warning. He’ll be standing at the refrigerator looking for a snack, standing in place talking to a friend, or in many other situations when BAM! He’s on the floor.

This has prompted frequent emergency room trips to ensure he didn’t have a brain bleed or a broken rib and to check out his deep brain stimulator. Fun stuff!

He has trouble communicating. For the past few years, his speech has taken a direct hit from the Parkinson’s disease fairy. I think the speech issues started after his deep brain stimulation surgery and have worsened over time.

He recently told me he could communicate with our kids much better when I’m not around. I think that’s because I’ve taken on the role of speaking for him, maybe when he doesn’t need me to. He probably requires me to be more patient and understanding, but I always feel I need to help him get the words out.

This may be more of a “me” issue than a PD issue. Consequently, I’ve made it a point to have him place his order at restaurants or use the phone to book his appointments to encourage him not to depend on me.

He may need help. I always worry about him when he’s without me. What if he can’t get his jacket on? What if he bumps his head while getting into the car? What if there’s a buffet and he can’t hold his plate while serving himself food? What if he can’t get his medicine out of his pillbox?

The endless fury of worry swirls through my mind like a tornado in a trailer park. But again, this sounds like a “me” problem rather than a PD problem.

A nearly independent dad

As I write this column, Arman is with our son (whom I finally stopped “babying,” if you were wondering) at his college fraternity’s weekend of dad events. Arman has been looking forward to this type of weekend for years. Alone time with Jake, hurrah!

I’m close by in the hotel, worried about every possible thing that could go wrong. It’s silly because my son, like his older sisters, is a phenomenal care partner to his dad. He’s probably better than me because he’ll allow his dad some space to have fun and care for himself.

But unfortunately, I’ve settled into this role of being overprotective and a bit crazy regarding Arman’s safety. I think it stems from so many years of watching this disease progression with no control over the outcome. Maybe this is something I can control (“me” problem again?). After all, the college dads’ weekend was absent any falls while they celebrated with the fraternity at various fun events.

At the end of the weekend, perhaps ironically, I went with my husband to the college bookstore, where he proceeded to have a minor fall while in my care. He nearly knocked over an entire rack of clothing. I guess he saved the grand finale for me!

It looks like I need to remind myself of my parenting philosophy to let the kids fly — and use this same mindset when caring for my husband. So let him fly, and hope that he asks for help as he “stumbles” through this life with Parkinson’s.

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.