How to Talk to Someone Who is Diagnosed with Parkinson's

"People without Parkinson’s" often wonder about how to talk to "people with Parkinson’s." Here, having a rulebook is definitely a good thing to avoid potential issues.

What term should we use?

In the first paragraph, I used the term "people with Parkinson’s" because some people feel the term "Parkie" (coined by Michael J. Fox) is offensive for its "cuddly" nature.

Thus, when the Parkinson’s community holds an anthropological/linguistics debate to decide whether this is our "P-word," you might want to decide if you’re going to use this word to help take the sting out of a cruddy diagnosis.

Frankly, if you have to use a term (and you often don't), I’m on the side of Michael J. Fox and Allison "Perky Parkie" Smith on this one, but then again, I was always a rabble rouser.

Should we talk about the weather?

Recently, my barber asked me if my tremors ever stop. I brought on the conversation with "I shake, but don’t worry. It doesn’t hurt," we're OK. I’m an open book. Better not to worry using scissors on me. Until someone turns this into a zoo or makes me the butt of their jokes, we’re good.

When asked, I’ll reflect on how heat and cold affect my Parkinson's, or how excitement, anger, and worry trigger tremors.

In this case, we talked about how the Van Gogh Immersive Experience calmed my tremors, as does massage, though sleep doesn’t since REM sleep behavior disorder.

When in doubt, better to talk about if there’s a chance of snow than to discuss intimate or embarrassing experiences brought on by Parkinson’s.

How about the government?

In case you don't know, I keep quiet on politics and religion. Talking about ethical responsibilities to provide healthcare is an open invitation for Tucker Carlson and Anderson Cooper to come into the house.

Once you invite a vampire in, he can come and go whenever he wants (like the relative you dread seeing at Thanksgiving).

Mandating the term "people with disabilities" versus "a disabled person," a phrase designed to focus on the person first, opens the opportunity for someone to scream about political correctness and cancel culture.

As a person with Parkinson’s, you may not have the speed you once had to get out the door fast enough. I know my knees and ankles aren’t what they used to be. Instead, talk about what you’re binge-watching on Netflix.

The smother

On the show The Goldbergs, the mother is often referred to as "the smother." For our purposes, anyone who is too intrusive can be a smother. They are caught up in their own agenda to save your world without really knowing how.

Personally, I don’t want to be the ingrate who can’t accept help. Not all caring and concern is helpful (thank you Megan Devine’s advice in the book It’s OK That You’re Not OK).

Guidelines not to cross:

  1. If your worry reduces me to childlike, know I'm going to growl.
  2. Help is okay until it feels intrusive. Then it feels like fear in the movie Misery.
  3. I have a caregiver wife. If a task seems like it's not your responsibility, leave it to them or immediate family.

When in doubt, talk about sports in generalized terms. However, be careful to avoid discussing how baseball's "disabled list" became the "injured list."

Should we even discuss Parkinson's?

As an open book and advocate, I’m willing to answer "genuine" questions, even awkward ones. Still, some people might feel uncomfortable with the elephant in the room. As long as you’re not treating me with kid gloves, we're okay.

If you do this or condescend me, I'm out. If you’re a relation I’m stuck with, I’m going to ignore you or drift off into thoughts about collecting baseball cards or whether it’s too soon to rewatch Marlon Wayans' Sextuplets.

I don’t want you to feel sorry for what can't be cured. Just treat me like the same human being I was before diagnosis. Enjoy life with me now.

I may not be able to do everything I once did, but I appreciate being included and hearing stories about adventure and fun. You're still my friend, and I want to know you're enjoying life.

Avoiding medical advice

When I announced my Parkinson’s, I was inundated by people without Parkinson's recommending medical marijuana. For some people this treatment works.

To me, this "helpful" hint felt like my diagnosis was being co-opted to aid in some people's desire to be stoned. If I wanted to be rude, I could provide them a list of states where marijuana is legal so they could move there, but I'm working on my karma.

If it's not going to get me attacked for being duped by Big Pharma, I just tell them I choose to use pharmaceuticals instead. If needed, I can leave that part out.

Always avoid off the cuff medical advice. Instead, talk about music you’ve been enjoying. If the conversation leads here and your company has to debate, you can discuss whether Snoop Dogg’s "Gin and Juice" is better than The Gourds’s cover version. Personally, I’m in the Gourds’ camp.

Deep thoughts or chit chat

The future is dark. Not being able to drive, work, process my thoughts, and get full use of my senses is some "scary shit." I’ve processed it enough to know I don’t want to talk about it casually.

If you want, I’ll discuss it with you. However, if you can’t bring personal experience or the equivalent of Camus, the Stoics, Buddhism, or survival stories to the table, there are other options.

My timeline and the parts of me that aren’t working aren’t chit chat. If you’d like that, I’m happy to talk about Cheesecake Factory desserts.

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