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Let’s Talk About PD: Starting the Conversation with Others

Following a Parkinson’s diagnosis (PD), many people want to know, “How do I tell others about my PD?”. After processing your new diagnosis, you may want to tell family, friends, and colleagues about your condition. Even years after your initial diagnosis, you may meet new people and wonder how and when to talk to them about PD. Discussing your PD is a personal decision – how and when you share medical information is up to you. Check-out some of the ideas below for talking to people about your PD, but remember to always do what feels comfortable to you!

Preparing to talk about your Parkinson’s

Before talking to other people about your Parkinson’s diagnosis, you may want to take some time to learn more about Parkinson’s disease on your own. When sharing your diagnosis with new people, they will probably have questions about PD and want to know how they can help. By taking the time to process your diagnosis, learn more about PD, and think about how you want to explain your condition, you will be better prepared for these conversations. Initially, consider telling just one or two close friends or family members- they can help you develop a personal strategy for talking about your PD with other people.

What about my husband/wife/partner?

Although it is important to rely on your friends and family for support, for many PD patients, the support of a spouse or partner is the most critical. You and your partner are a team, and you should ask them to be as involved as you want them to be in your PD management. Soon after your diagnosis, invite your partner to medical appointments or health education classes, giving them an opportunity to ask questions and learn ways that they can support you. Rely on your partner, and focus on communicating clearly and effectively about each person’s concerns and needs. Going forward, your partner or spouse will be your main source of guidance and support, and can help you talk to other people about your PD as well.

Okay, but how do I tell my family and close friends?

After learning more about PD and determining how you want to discuss PD with others, ask your partner or support person to help you share your diagnosis with other people. When talking about your PD, always specify how and if you want the information shared. For example, if you do not want your entire office to know about your diagnosis, ask your work friends to keep the information private. Depending on the situation, you may want to tell an entire group of people about your diagnosis, or you may want to talk to people one at a time.

Just as your own adjustment and processing took some time, your family members and close friends may also need some time to process the information. Give people time to ask questions, and be sure to express your hopes and plans for the future. Talk to family members and friends about what things will change as your disease progresses, but also explain what things won’t have to change. Although PD is a progressive disease, you may be able to keep up many of your normal habits and routines. For example, if you and your sister have lunch every Tuesday, keep those plans, and spend some time discussing PD together. Your diagnosis does not suddenly change your whole life, and keeping up your personal and social routines can help you to cope with your condition.

What if I need help? What if I don’t need help?!

In disclosing your PD to friends and family, you will inevitably be asked “How can I help?”- a lot. To rely on your friends and family members for support, provide them with practical suggestions for ways they can help, depending on your individual needs. However, if your friends or family members try to do things that you want to do by yourself, politely say “Thank you, but I can do that myself”. Although there may be opportunities for family and friends to support you on your PD journey, you should also set clear guidelines to maintain your independence and self-efficacy, when possible.

In discussing your PD, other people will respond to your attitude and outlook. If you seem positive and hopeful, they will often react in the same way. Talking about your PD will likely be an ongoing conversation, and keeping your attitude positive may help you to continue this discussion with friends and family. Remember, your needs and symptoms will change over time, so you may find that continuing to discuss your PD with your friends and family will help you better manage your condition.

How do I explain PD to my kids?

Most parents will tell you that a child can sense if something is wrong. Even young children are very aware of their parent’s emotions and attitude, so you may want to talk to your kids soon after your diagnosis, or whenever your symptoms become more visible. When talking to your kids about PD, try to be reassuring, and maintain a positive outlook. Discuss what changes or symptoms they may notice, but also tell them what does not have to change. Start by telling them that Parkinson’s will not change how much you love them, and talk to them about all the things you can still do together.

Especially for younger children, explain that Parkinson’s is not contagious (they might believe that ‘disease’ means contagious or infection), and considering renting or purchasing books for talking to kids about Parkinson’s. For teenage children, you may be able to share more information about PD symptoms and progression, but focus on talking about the things they can do to help you. By getting your family involved in PD advocacy, awareness, and fundraising events, you can help your kids to understand your PD, as well as keep the whole family positive and hopeful. Ultimately, kids will respond to your attitude, so by staying positive, your kids will be positive too.

Do I have to tell my hairdresser? Should I talk about it with my neighbors?

Talking to or telling people about your PD is ALWAYS your choice. Beyond your close family and friends, you may or may not want to discuss your PD, and that’s okay. However, if you do want to tell people about your PD diagnosis, control when, where, and how you tell them. If you’re in charge of the conversation, you will feel more comfortable. For example, if your neighbor asks how you’ve been feeling lately, you may ask them in for coffee, rather than discussing it at the kids’ bus stop. Over time, talking to people about your PD will get easier, and you will learn what strategies work best for you.

“You look fine.”  “Have you tried this….”  “Oh, I know someone who has that.”

When discussing your PD, you will inevitably get some pretty annoying comments, suggestions, or questions. Even if your colleague’s “sister’s friend’s dad has Parkinson’s”- YOU are the expert, not them. Always remind people that PD affects everyone differently, and then tell them how it affects you. You may sometimes get unsolicited medical advice, personal questions, and blatant misinformation. Remember, every person you discuss your PD with is not also your doctor, and you control how and when you talk about your condition. If Parkinson’s affects your ability to communicate (such as trouble speaking or facial masking), it may be helpful to disclose your PD to help people understand your ways of communicating. However, always explain what will help you and what won’t, and only share or discuss what you are comfortable with.

What do I tell my boss?

Every person with PD has a different way of talking to their boss or colleagues about their diagnosis. While some of you feel like your medical information should be kept private, other people may want to disclose their PD diagnosis, or may have to because of their symptoms or work responsibilities. Generally speaking, you may want to tell your employer about your PD diagnosis early enough to receive necessary accommodations, but not too early. If you notice that you now need certain workplace accommodations to continue to do your job, this is probably a good time to tell your boss.

While employers typically appreciate early disclosure of medical conditions, some PD patients choose to keep their medical status private until otherwise necessary. Under the American Disability Act, you may be protected from workplace discrimination for a disability if you have requested “a reasonable accommodation”. During the early stages of PD, you may not require accommodations, and therefore may not want or need to disclose this information. Regardless of when you decide to tell your employer, we recommend that you establish an ongoing conversation about your PD. Your symptoms and needs will continue to change overtime, so establishing an open, honest dialogue may benefit you, and your employer, in the long run.

Moving forward

The people in your life can be a powerful source of love and support when managing Parkinson’s. Regardless of when you tell someone about your PD diagnosis, we encourage you to keep the conversation going. A Parkinson’s diagnosis does not have to dominate your whole life. As you move forward, keep the conversation about your PD open, and rely on your friends, family, and colleagues to discuss your PD experiences. Lastly, reach out to your Parkinson’s Community, and when you want to, find ways to discuss your experiences with your PD peers!