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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.

“You look OK. So you’re OK, right?”

As anyone with Parkinson’s knows, not all symptoms are visible. Tremors are the most widely known symptom, but it is far from the only one. 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, 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?”

“How come you don’t have tremors?”

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.

“Have you tried CBD oil?”

Your heart is likely in the right place when you make suggestions to your friends and loved ones who live with PD, but this question 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 researching therapies. Better still, simply ask how you can show support.

“What causes Parkinson’s?”

While this is a great question, 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.

Comments

  • jellybean
    3 months ago

    I am the spouting a person with Parkinson’s and he is in denial about a lot of the things you talk about. Thank you sooo very much it has helped him know what I say is true the symptoms I mean he always says no I don’t that I don’t know what I’m saying. Reading your articles has been a god send of help to me he can read and see what I see after 42 years of marriage and 3 years of dating I notice. I am very intuitive about many things I feel it in my gut my soul. I print out some of these for him to read and thank god it is helping him to believe me. I feel so helpless and hopeless some days. I would love to you talk about the mental and verbal abuse they inflict as a result of them having mood swings and having to except that they have a disease! God bless you for sharing your story ❣️
    Jellybean

  • Jessica.Hall moderator
    3 months ago

    Hi @jellybean, so glad to hear that you have found our site and information provided to be helpful! 42 years together- that is amazing! Congratulations to you both! I have included a link to various articles we have on caregiving and/or from the caregivers perspective that I thought you might appreciate -https://parkinsonsdisease.net/?s=caregivers. Also, included an article on mood changes in PD here-https://parkinsonsdisease.net/symptoms/mood-changes-depression-anxiety/. We are so glad you found us and are a part of our community. Wishing you and your husband well. Hugs, Jessica- Parkinsonsdisease.net Team

  • Jessica.Hall moderator
    3 months ago

    Hi @jellybean, so glad to hear you feel so connected to our community and, again, that the articles have been so helpful! Thanks again for sharing with us! We are always here for you. Be well, Jessica- ParkinsonsDisease.net Team Member

  • jellybean
    3 months ago

    Thank you for responding to my post I have cried when I have read some of the stories of people who have Parkinson’s and care for a loved one! I don’t feel so alone or like I’m a nut case for things I notice as I said. I read some of the articles to him and my family members who have no idea what I go through not asking for potty just saying not easy for me. Family members have learned that I do see real things other people go with Parkinson’s I have been accused of being over sensitive all my life I feel yes I am sensitive but also god gave me a gift of being a little more intuitive maybe than some others. I have been right about many gut feeling even a family being sick and was dying it happened everyone was surprised at first of course she is a negative person I am called! I am just real after many devastating things I have been through in my life. I am so grateful I found the site. Thank you so much ! Jellybean

  • Hubby
    9 months ago

    Hi. People drive me mad when they tell me how they ” Hope I get well soon”.
    It’s a progressive disease.
    I’m not going to get better.

  • Dan Glass moderator
    9 months ago

    Thanks for the mention!

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