What Not to Say to Someone with Parkinson’s Disease
We all do it—we all say that thing, putting our foot in our mouths, and then immediately regret it. We tend to do it more often when we don’t know what is acceptable to say and ask. Every diagnosis, Parkinson’s included, has its own vocabulary and no-no's when it comes to communication.
The good news is that you’re reading this! That’s a great first step. Read on to see what we’ve found are key questions to avoid when talking with someone with PD.
Too often, acquaintances tend to downplay the severity of a disease when they can’t see the full story. But, that’s exactly the problem - they can’t see the full story. Nor have they earned the right to hear it.
Brene Brown, a leading researcher on shame and vulnerability, reminds us that only our inner circle of those who have confided in us have earned the right to our vulnerabilities. Never forget that. A kinder way to broach the subject might be to say: “You look well today, but I’m guessing there might be more going on beneath the surface. How are you?”
Tremors are not the only symptom of Parkinson's
Most people don’t know much about Parkinson’s disease beyond the tremors, so it makes sense that they associate PD with tremors. If you can, just give your friend or loved one some space, and if they want to talk about this with you, they will. Or, you could bring it up gently. “I’ve noticed you don’t have tremors. If you’re open to it, I’d be curious to hear more about your experience with Parkinson’s.” This puts the subject in their court, letting them answer when and if they choose.
Trying CBD oil to manage Parkinson's symptoms
Your heart is likely in the right place when you make suggestions to your friends and loved ones who live with PD, but the question, "Have you tried CBD oil?" is one that they’ve likely heard a few too many times.
ParkinsonsDisease.net author Dan Glass lists this as one of biggest pet peeves. He says, “I think people feel that if I use medical marijuana or have it, they can come over and we’ll listen to Bob Marley together while I share it with them.” Not so.
Rather, a more thoughtful way of showing support might be to ask if your friend or loved one would like any suggestions or help with researching therapies. Better still, simply ask how you can show support.
Research the causes of Parkinson's
While "What causes Parkinson's?" is a great question to ask, it’s probably best to not ask this of someone who lives with PD. Instead, Google it. Do your homework. Then, if you read an article and come across something that you have a question about, pose that question to your loved one. You could say, “I have been researching Parkinson’s in order to learn more about what you’re living with. I came across an article that says such-and-such. Would you be open to talking about what your take on that is?” Or, “What do you think of that?”
Let them decide how much they want to talk about Parkinson’s with you. For some, it might be a comfort knowing that you are doing your homework and learning about the disease. Others may want more privacy.
Regardless, it shows great love and kindness when we approach this, or any subject, with kindness and compassion. And, keep in mind that your loved one has good days and bad days, as we all do. Some days might be great for learning more about PD, and other days, your friend may want to just enjoy your company.
Do you participate in a support group for PD?