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Parkinson's: How to Talk About Your Non-Movement Experience

Reviewed by Jennifer Robinson, MD on May 08, 2020

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Parkinson’s disease often affects the way you move and walk. But there are other symptoms that aren’t as easy to spot, like depression, sleep troubles, and slowed thinking.

It’s important to talk about these non-movement issues. They have a big impact on your quality of life. They can also affect your relationship with friends and family. Sharing your experience can help you get the support and care you need.

But discussing your experience isn’t always easy. These tips can help you get the conversation going.

Who Should You Share With?

You decide who you want to share with, and how much to tell. Consider discussing it with your: 

  • Doctors: They can treat non-movement symptoms. They’ll check that this isn’t a side effect of your Parkinson’s drugs. They can prescribe treatments and medicines, and connect you with resources, such as support groups and therapists.
  • Spouse or partner: You may not want your significant other to see you differently. But they’re often the first ones to notice your symptoms. Talking to them can strengthen your relationship and give you the chance to work together.
  • Friends and family: Telling your loved ones relieves the burden of keeping a secret. They’ll better understand where you’re coming from, and you’ll both feel more comfortable. You don’t have to tell everyone right away. Start with a few trusted friends and family members. They can offer support and prevent loneliness. 
  • Bosses and co-workers: Legally, you don’t have to tell anyone at work. They aren’t allowed to take action against you because of your Parkinson’s disease. But you may decide to share your experience, so you can offer solutions, like a change in schedule. Or you may feel like you need to speak up, because your job can affect others’ safety.

How to Talk About Your Experience

It’s normal to feel scared, awkward, or anxious about bringing up your non-movement experience. Taking time to prepare and think through what you’re going to say can help make it easier.

  • Learn about your symptoms. First, you should understand Parkinson’s disease yourself. This will help you explain and answer questions. Ask your doctor for trusted resources about your symptoms. You may also want to read books or visit websites with your loved one.
  • Be straightforward. You don’t have to share every detail of your non-movement experience. But you shouldn’t sugarcoat it, either. Be direct. You can also think of different ways to describe your symptoms. For example, instead of only saying that you have cognitive changes, you may explain how changes in your brain have slowed down your thinking.
  • Focus on the positive. Remind your loved ones that Parkinson’s isn’t a death sentence. Focus on how you plan to treat and manage your non-movement symptoms.   
  • Make specific requests. Tell your loved one how they can help. You may want them to drive you to your doctor’s appointments, remind you how to use the computer, or offer a shoulder to lean on when you’re feeling down.
  • Talk about your feelings. Saying that you’re scared or worried can help you connect and find ways to work through these emotions.
  • Give them some time. Your loved one may need a few days, weeks, or even months to process everything.

How Should Caregivers Discuss It?

Caregivers are often the first people to see non-movement symptoms. If you’ve noticed changes, speaking up is the first step to getting someone with Parkinson’s the help they need.

  • Remind them about the Parkinson’s connection. They may not link their non-movement experience with Parkinson’s disease. They may write off their depression, sleepiness, or fatigue. Showing them the link between brain changes and these symptoms helps them see it isn’t their fault.
  • Talk to their doctor. It’s best to discuss it together. You can let the doctor know on your own. But, because of privacy laws, they may not be able to respond in detail.
  • Consider getting written consent. In many cases, doctors can’t discuss someone’s health information without their approval. You may want to get a written consent form that lets you speak freely to the doctor on your own.
WebMD Medical Reference

Sources

SOURCES:

Parkinson’s Foundation: “Cognition: A Mind Guide to Parkinson’s Disease,” “How to Talk with Your Family About Parkinson’s,” “Non-Motor Symptoms,” “Telling Family About the Diagnosis.”

Michael Okun, MD, medical director, Parkinson’s Foundation; executive director, Norman Fixel Institute for Neurological Diseases, University of Florida.

The Michael J. Fox Foundation for Parkinson’s Research: “Navigating Cognitive Changes in Parkinson’s Disease.”

Next Step in Care: “HIPAA: Questions and Answers for Family Caregivers.”

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