Written by Amy Dressel-Martin, MA
Parkinson’s disease is a joke at our house.
Let’s face it; our lack of dopamine can make our bodies do some crazy things sometimes. I’ve always advocated seeing the humor in Parkinson’s. While not undermining the seriousness of a Parkinson’s diagnosis, my husband and I hope the humor helps keep the topic available to everyone.
Parkinson’s is present all of the time in our home, and I need to keep it present in order to be honest with my family and myself. I have to own it.
Keeping Parkinson’s Present
Remember when, as a child, you thought you knew what was going on, only to find out much later how wrong you were? For example, I remember thinking my dad was the evening anchor on the local news because, (a) they both had a healthy head of black hair; (b) my mom watched the news every evening at 5:00; and, (c) my dad didn’t get home until after the news was over.
My conclusion: Dad must be the newscaster. Wrong! But we all had a laugh about it years later.
Depending on the ages of your children when you were diagnosed with Parkinson’s, consider how they might have interpreted what was happening. My kids were 7 and 9 years old when I was diagnosed with Parkinson’s. Recently, I asked them (now ages 14 and 16) to give me an account of how they each remember my Parkinson’s before, during and after Deep Brain Stimulation (DBS) surgery. Our son (12 at the time I had DBS), thought my surgery was to help my husband work longer and think more clearly. Our daughter (10 at the time) was “terrified” sitting in her math class, thinking about me having brain surgery. “Who wouldn’t be?” she said.
It’s so easy to carry on with school, work, sports, activities, trips and to believe that “we explained Parkinson’s to them already.” However, it’s important to remember that our kids’ brains were — and are — still growing, learning and absorbing different facts, emotions and body language differently as they develop and mature. Plus, Parkinson’s symptoms are always changing and progressing, so keep them updated. Keep it present.
Take Responsibility & Take Time to Talk
I think sometimes I respond so well to my DBS and medications that I don’t seem like I have Parkinson’s. But I can feel the tense muscles in my thighs, the strain in my throat when I try to use my loud voice. It never leaves me and it never leaves us. I try not to let it affect our everyday lives and I want to do everything we used to do as a family — and more. Most often, my kids remind me that I have Parkinson’s and should parcel out my energy appropriately.
Yet, that’s not fair to them. It’s not their responsibility to monitor my well-being; it’s mine. Although many days I feel like I could do anything, I have to step back and think about how I will feel on mile two of our planned hike, not just mile one. It’s also not fair or responsible of me to put myself in a risky situation out of which I would need help. That’s not to say that I curb my activities all the time, but I am learning to take my abilities into account and step out if I need to.
As I’ve said before, I’ll never thank Parkinson’s, but I’ve gained the virtue of empathy through this disease. I have involved all of my family on my Parkinson’s journey since the very beginning. We’ve all gone to my support groups, my dance classes and performances. We don’t shy away from people who are different. And we consider what may be going on in other people’s lives that may make them act in an unexpected way.
Neither of our kids has asked about the tough stuff like life expectancy, long-term care or specifically, what my life and my caregiver’s life will look like in the future. I could assume they’ve looked it up on the Internet or read some of the Parkinson’s literature I’ve left lying around on purpose, but leaving the conversation to chance would be irresponsible of me.
They’re old enough now. Time to talk.
Here are my top tactics for keeping the lines of communication open with my kids:
1. Keep Parkinson’s present through humor or whatever works for you; don’t push it aside. If you adopt humor as a strategy, be prepared to bear the brunt of the joke.
2. Ask your children (and maybe other family members) direct questions about their feelings about and understanding of your Parkinson’s.
3. Be ready to discuss the tough stuff when they are, and have the conversation first with your spousecaregiver so that you’re both on the same page.
4. Consider how your kids communicate and learn. It may be that a video on the Internet or a book could be helpful.
Amy Dressel-Martin lives in Denver, Colorado with her husband, two teenagers, an orange cat, two chickens and a duck (who thinks he’s a chicken). She is eternally grateful to whoever decided putting electrodes in the brain attached to batteries under the collarbone was a good idea, because it was.