How to Talk About Your Parkinson’s Diagnosis

💡 Quick Summary

Learn ways to talk with loved ones, children and people at work about your Parkinson’s diagnosis, with examples of what you can say.
Before sharing, give yourself time to adjust and learn about Parkinson’s.
Sharing at work is optional. Think about your privacy, how your job may be affected and what protections are available.

A diagnosis of Parkinson’s disease (PD) can be unexpected. Adjusting to the news takes time. As you begin to work through this new normal, it’s important to remember that you don’t have to face Parkinson’s alone.

At some point, you may decide to share your diagnosis with others. You are in control of that decision — including whether to share, who to tell, when to tell them and how much information to provide.

How do I decide whether to share my Parkinson’s diagnosis?

The thought of sharing your diagnosis can feel empowering and overwhelming, or a combination of both. While a diagnosis may offer a reason for some of the unexplained early signs you experienced, it might also bring the fear of the unknown and the “what ifs.” What if people look at me differently? What if people pull away? What if my child or grandchild doesn’t understand?

It's important to remember you are still who you were before the diagnosis — whether that’s someone’s close friend, trusted parent or beloved child — and that while Parkinson’s might change your life, it doesn’t define you.

Sharing the news is often the first step in building a network of support. Although loved ones and friends may initially react with surprise, worry or grief, some may step forward to offer support through the ups and downs.

Explore how a Parkinson's diagnosis is made and what type of diagnostic tools are used.

LEARN MORE

When deciding who to share your diagnosis with, think about the Why, What and Who:

Why do I want to share my diagnosis?
What do I want people to know about my diagnosis?
Who needs to know or would be helpful to tell?

Addressing Parkinson’s Stigma

One challenge of sharing a Parkinson’s diagnosis is addressing the stigma that can accompany a chronic disease. Stigma stems from stereotypes about Parkinson’s and a lack of understanding. It can result in judgment, isolation and feelings of shame. Some people may start to feel embarrassed or worry about how others see them. This can make it harder to seek care, talk openly about symptoms or share a diagnosis.

Parkinson’s stereotypes ignore the reality that people of all backgrounds — men and women, older and younger — live with PD. Visible symptoms like tremors, freezing of gait or speech issues can be misread as intoxication or aging, rather than signs of Parkinson’s.

Talking about Parkinson’s can help challenge stereotypes and address stigma head-on. Learning more about Parkinson’s can also help you share accurate information with others.

The Parkinson’s Foundation shares reliable information about Parkinson’s to increase awareness and correct misconceptions that fuel stigma. Personal stories — including My PD Stories — can help others understand Parkinson’s and highlights resilience.

Learn More about Stigma & Parkinson’s

Who should I tell about my Parkinson’s diagnosis?

Before sharing your diagnosis, it can help to think about who you want to tell and what you want to say. Parkinson’s affects everyone in the family, so people often start by sharing the news with those closest to them. People often start in this order:

A spouse or partner (if they don’t already know)
Then children or parents
Next, close friends, neighbors or faith or spiritual leaders

Knowing what to expect can help people in your life understand how they can be there for you and to anticipate possible changes in relationship roles.

It’s normal to not have all the answers. For most, Parkinson’s slowly progresses, meaning your needs will change over time and your loved ones’ roles may also change. Learning about Parkinson’s together early on can help your family support you in the ways you need.

How do I explain Parkinson’s to family and friends?

Sharing your diagnosis, especially for the first time, can be emotionally heavy. Thinking about what you want to say ahead of time can make it easier to start the conversation.

Take time to notice your feelings: It’s normal to have a range of emotions, including anger and denial. Some people find it helpful to talk with a counselor or their spiritual leader as they decide how, when and with whom to share their diagnosis.

Learn about your diagnosis: Start exploring what living with Parkinson’s means. The Parkinson’s Foundation New to Parkinson’s page provides guidance and resources to help you navigate your diagnosis. The more you know, the better prepared you will feel to answer questions or share links to helpful resources.

Choose the right place and time: There is no wrong or right way to start the conversation, but a quiet, calm atmosphere can help your loved one take in the news and respond.

Here are some conversation ideas you can use:
- Opening the conversation. “I want to share something important with you” or “I have some health news. I went to see a neurologist and want to tell you about it.”
- Keep it simple. “I’ve been diagnosed with Parkinson’s disease and am working with my doctor on a plan.” You might also want to share how it impacts you. For example, “This changes the way I move and affects me in other ways. It can influence my mood, make sleep difficult and can make everyday activities more challenging.”
- Share your experience so far. Your loved one may ask about your symptoms or how you knew something was wrong. Go into as much detail as you are comfortable. For example, “First I noticed I had trouble walking, which turned out to be an early symptom.” You can also share what you’ve learned so far and your treatment plan.
- It’s okay to learn along the way. You may not know how to respond to every question. Consider saying “I’m still learning more about it myself.”
- Prepare for “I’m Sorry” as a response. It’s normal for your loved one to respond with empathy or apologize.
- Leave the door open. People often want to help and may look for direction. Staying connected matters, but don’t feel you have to have everything figured out. You might say, “Thanks for listening. I’d love to talk again soon.”
- You are in control of the conversation. Share as much information as you want and end the conversation when you’re ready. For example, “I thought it was important to let you know.”

How do I tell children and teens about my Parkinson’s diagnosis?

Children often adjust well to a loved one’s Parkinson’s diagnosis. Children may have a range of feelings — including fear, anxiety, worry or sadness — and those feelings often change over time. It is hard to predict how a child will react. Helping them better understand Parkinson’s can reduce fear and anxiety.

You may want to hold back information because you worry it may create fear. However, regardless of your child’s age, consider telling them you have Parkinson’s. Many children report not having enough information and say that understanding Parkinson’s better would have helped them feel more secure.

Explain Parkinson’s to your children and share your current understanding of what may happen. Let them know that Parkinson’s is not life-threatening, that they are not responsible for it and that it is not something they can catch.

Here are some conversation ideas you can use:
- Use simple, age-appropriate language. You might say, “You may notice that my right hand shakes. That’s because I have something called Parkinson’s disease.”
- Explain what Parkinson’s is and how it might change things at home. You might say, “Parkinson’s might change how I walk or do some things, but a doctor is helping me.”
- Reassure them it’s okay to ask questions and share their feelings. You might say, “Is there anything you want to ask me? You can always come to me with questions.”
- Share ways they can help and be involved. You might say, “Sometimes I might ask you for help, like going on a walk with me so I can exercise or coming with me to pick up my medication.” If they seem curious, consider bringing them to meet your neurologist or another member of your care team.
- Help older children and teens find reliable information. Talk about how to find reputable information about Parkinson’s. You can visit trusted websites together, like Parkinson.org, rather than Googling “Parkinson’s.”
- Prepare for different reactions. Your child may not want to talk right away. Make sure they have someone they feel comfortable talking to, such as another relative, parent or teacher. You might say, “I understand you might not want to talk to me about it. Your aunt knows about it too, and you can always talk with her.”

More Resources

Should I tell my employer that I have Parkinson’s?

Deciding if and when to share your Parkinson’s diagnosis at work is a personal decision, especially for people with early-onset Parkinson’s who might be in the height of their career. Some people worry that the news could put their job at risk or lead to discrimination.

What protections exist for people with Parkinson’s at work?

The Americans with Disabilities Act (ADA) protects people with Parkinson’s. It prohibits unlawful discrimination and requires employers with 15 or more employees to make reasonable accommodations to help you continue working, if you choose.

To be covered under the ADA, you generally need to disclose that you have a medical condition that may affect your work. It's important to disclose any issues that might affect your job performance.

Sharing your diagnosis early on with your employer can help you explain symptoms that may affect your work and discuss what support you might need to continue in your role. You may also choose to share the news with trusted coworkers and colleagues to build support.

Learn more about your legal rights

Planning it Out

If you decide to share your diagnosis at work, first take time to understand what the ADA covers and what it doesn't. Your first discussion should usually be with your direct supervisor — the person who oversees your work and often puts accommodation in place.

If your company has human resources department, sharing your diagnosis at the same time or soon after can help protect your rights under the ADA.

Before sharing your diagnosis, think about:

Who needs to know? This can help clarify what you want to say, who to share with.
Do you need accommodation? What you need to help you work effectively.
What are you comfortable discussing? What are your boundaries? You are not obligated to share particulars and have the right to keep medical information private.

- Open the conversation at an appropriate time. Keep the conversation professional and simple. You might say, “I wanted to share some health news. I have been diagnosed with Parkinson’s disease — a chronic condition that can affect my movement and other areas of daily life.”
- Keep details as private as you want. You do not have to disclose Parkinson’s. You might say, “I have a health condition that may affect areas of my work. You may notice me doing some things differently, and I wanted to keep you informed.”
- Ask for support if needed. Think about what you need before the conversation. The Job Accommodation Network (JAN) can help you understand what accommodations for Parkinson’s might look like. Talking through possible accommodation requests with your doctor or family first can help you clarify your needs. When you approach your employer you might say, “I value my role and want to continue working. To do that, I will need certain accommodations.”
- Be clear and focus on your strengths. Use simple, non-medical language and share that you plan to continue contributing in your role, if that is what you decide.
- Follow-up in writing. If you request support, send a summary of your meeting and your requests in an email. You might say, “Please let me know what information or documentation I can provide. I’ll follow-up with a summary email.” Keep a copy for your records.