What to Say (and Not to Say) to Someone with Parkinson’s

Updated

When someone you love has Parkinson’s, you know they face challenges every day. 

Parkinson’s is a degenerative disorder affecting the nervous system. Parkinson’s slowly erodes a person’s ability to move and control their body, causing them to become fully dependent on others. It’s a chronic condition and can eventually contribute to a person’s death, but it’s not quite the same as coping with a terminal illness like cancer. 

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The outcome sounds dire, but people with Parkinson’s have many treatment options and can live full lives. Symptoms can still get in the way of daily life, and you may find yourself wondering what to say when they struggle. In this guide, we’ll review some of the best and most supportive comments while also steering you away from the worst ones.

Words of Encouragement or Positive Things to Say to Someone with Parkinson’s 

It takes strength to meet the daily challenges of living with Parkinson’s disease, but your supportive and encouraging comments can be reassuring. Here are some respectful and positive ways to send that message.   

“I understand it may not work out sometimes, but I’d love to spend some time with you.”

Making plans with an unpredictable health condition can be tricky. You want to spend time together, but symptoms can get in the way at times. That doesn't mean you should stop trying. 

People with chronic conditions can become isolated and frustrated. It can seem pointless to make plans when they may have to cancel. Show your loved one that you'll make time for them, even with the chance of cancellation. And if your plans fall through, they'll know you understand from the beginning. This approach shows respect for their challenges while leading with optimism.

“What’s something fun we can do together soon?”

People with Parkinson's are constantly aware of how their conditions may interfere with dreams, goals, and daily life. It can be a drag thinking about symptoms and limitations every day. Instead, talk about some fun things they've been hoping to do this year, like seeing a show or visiting a different state. 

Of course, worsening symptoms could change plans at any time. But that doesn't mean a person with Parkinson's shouldn't work towards fun or fulfilling goals. Everyone needs to feel purpose and drive, and many people with Parkinson's find ways to turn those goals into reality.  

“I see you doing a lot to take care of yourself every day. I’m guessing you have a great treatment team behind you, too.”

This message highlights two critical parts of managing a chronic condition like Parkinson's: the efforts of the individual and the support of a solid treatment team. People appreciate being seen and recognized for what they go through each day. 

Living with Parkinson's can be hard some days, and people with the condition endure challenges that others may not understand. Working with a care team is a valuable part of managing Parkinson's. It can be overwhelming at times, but having confidence in a care team can help a person feel well-supported.

“I want to support you, but I’m not sure how. Could I help with laundry this week?”

This is a better way of saying the familiar but unhelpful phrase, "If there's anything I can do for you, let me know." It's easier to think of ways to help a person with the flu. Chicken soup, someone to run errands, and some pre-cooked meals all make sense. However, Parkinson's isn't quite so cut and dried. 

A rough day may not always look the same each time. One day, a person may need emotional encouragement; another day, a little help around the house is more important. Ask for a bit of guidance, and commit to connecting with them regularly. 

What Not to Say to Someone with Parkinson’s

Even with the best intentions, you may say something insensitive to someone with Parkinson’s. Here’s a quick guide on what to say and comments to avoid.

“Everything will be fine. You'll be OK.”

This shallow comment doesn't acknowledge the ups and downs a person may go through with Parkinson's. This condition puts an enormous burden on a person's body. And while it may not be directly fatal, it can put a person's life at risk in other ways. It can be uncomfortable, painful, and some may feel embarrassed by the changes to their body. 

So everything may not be fine or OK. A person may feel good some days, but sometimes they may feel pretty rough. Ultimately, saying this comment makes you sound out of touch and dismissive.

What should you say instead?

“I know this has been difficult for you sometimes, but I'm here to support you no matter what.”

Parkinson's is part of your loved one's life. Saying that you're with them through thick and thin is more reassuring than a throwaway comment that sounds nice.

“Do you really need all of that medication? Should you be eating/doing that? I heard you’re supposed to do [X] instead.”

Asking about a person's treatments can help you understand their experience. But these comments carry a doubtful and criticizing tone. You may mean well and want to help more than anything. But Parkinson's isn't something you fix so that it goes away. It isn't that simple. This condition requires ongoing care and management.

But being critical can cause them to get defensive. If your loved one is at the beginning of their treatment or struggling for some reason, they may already wonder if anything they do will help. And even if you know something about Parkinson's, each person's journey is unique. This comment comes off as judgmental instead of helpful or curious.

What should you say instead? 

It's OK to have questions about Parkinson's disease and some of the treatments. It's all about the tone you bring to the conversation and your timing. While some people don't mind talking about their condition, see if it's a good time to talk about it first. Ask open-ended questions or statements like:

  • “I’m curious about your treatments. Would you mind talking about some of them?” 
  • “I see you doing [X] every day. How does that help you?”
  • “I have some questions about Parkinson’s. Is this a good time to ask you?”

“Everything happens for a reason. God never gives you more than you can handle.”

First, the other person may wonder what reason would justify them developing Parkinson's. Why do they have to sacrifice their health for a reason they may never understand? Finding a higher purpose in suffering is best done by the person in their own time, not because someone told them what it meant. Hearing it from someone else can seem harsh.

Second, it can seem like everyone's response to Parkinson's is measured and put on a chart for comparison. It adds a "pull yourself up by your bootstraps" expectation to managing a complex physical condition. It's dismissive of the person's struggle and discomfort. And while every individual can manage their mindset to some degree, this comment makes it sound like the burden of coping is solely on the individual's shoulders. 

What should you say instead? 

It's tempting to say something that puts the situation into a neat little box. Instead of referring to destiny or a reason, admit that you’re at a loss for words. That's more honest and relatable, even if it sounds awkward in your mind. 

  • "I want to say something really helpful and comforting, but nothing sounds quite right." 
  • "I'm not sure if this helps, but I just want to say I'm here for you."

Other Ways You Can Support Someone with Parkinson’s

The key to supporting someone with a chronic degenerative condition is balancing help with independence. A person with Parkinson's knows that their symptoms will eventually worsen and disrupt their ability to function.

So while this must always be part of the equation, Parkinson's isn't a death sentence. Life is meant to be lived, so be a willing participant in their adventures when their symptoms allow. Here are some ideas for making the most of life with your loved one.

Take them out

Invite your friend or loved one to join you for something social or active. What have they enjoyed doing before their Parkinson's diagnosis? Or do they have new interests or hobbies? You may need to adjust what you do to account for their condition. But it's these activities that make their life meaningful. 

When you can help your loved one find fun in their day, their Parkinson's symptoms won't feel as overwhelming. They'll have more to look forward to than just existing and managing their symptoms.

Talk about things other than their condition

Someone with Parkinson's is a person first. They are still the same individual and want to be seen as more than the sum of their symptoms. This conversational tip goes with the first suggestion of taking your loved one out. As they stay actively involved in their interests, you'll have lots of topics to discuss. 

The musical they had on their wish list, the downtown market you went to last week, or the garden they're planting are all more interesting than their daily struggles. There's a time and place for that conversation, so don't ignore it. But be ready to jump into current events and hobbies as well. They'll feel more like themselves, and your discussion will distract them from any difficulties from the day.

Take part in their care

Your role as a positive person in their life is vital. However, you can also support them in the daily routine of managing their condition. This could be as simple as running a few regular errands every week or doing some yard chores. Or, if you both enjoy activities like cooking or gardening, create a supportive ritual together. It serves double duty as social time and practical assistance. 

You may need to learn how to help if they feel unsteady or understand the early signs of exhaustion. Learn more about Parkinson's from your loved one or their team so you know how to help.

Caring Words of Support For Someone with Parkinson’s

Living with Parkinson’s isn’t easy. But with the support of caring loved ones and professionals, a person with Parkinson’s can get the most out of life. If someone you care about is living with Parkinson’s, always keep kindness and compassion in mind when having conversations. Through their ups and downs, your support means more than you can know. 


Sources:
  1. “Myths and Facts: 7 Parkinson's Disease Misconceptions.” hopkinsmedicine.org.
  2. “Special Challenges of Caring for Someone with Parkinson’s.” parkinson.org.

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