As your Parkinson’s disease (PD) progresses, you will probably discover that relationships and your roles in your life will change.
In part, certain PD symptoms such as difficulty speaking, or facial masking can interfere with your ability to express yourself and to communicate with others. Keep in mind that your body language and speaking ability play a big part in your role as a parent, spouse, friend, grandparent or employee. Helping others understand Parkinson’s can help empower you through your PD experience.
Communicating After a Diagnosis
While Parkinson’s symptoms — from movement-related such as trouble moving to non-movement symptoms like depression — can make it tempting to isolate, bear in mind that it is still possible to maintain meaningful, productive relationships. To do so, you will need to address the issues that affect your ability to communicate effectively with the people in your life.
There will come a time when you want to let others know about your diagnosis. Timing and preparation can help. To start, you probably do not want to discuss all the details of your illness but give those closest to you accurate information about your Parkinson’s diagnosis and how you are handling it. It may help to explain your current symptoms — the ones they can see, and the ones they can’t. Help prepare them for what could happen down the road and how it might affect them. Think of these interactions as the beginning of a conversation that will hopefully continue as you learn to live with PD.
Changing Roles in the Family
As you adjust to living with Parkinson’s, and as symptoms progress, your family roles may evolve. Your spouse may take on more of a care role, you may have to take a step back from certain chores or you may depend on your adult children to help you navigate your doctors’ appointments. Role changes can be difficult but adapting is vital to living with Parkinson’s.
If you are having facial masking and speech issues early on, it is a good idea to plan for a time when you may need someone else to help you communicate, especially at medical appointments. If you do not have a spouse or partner to assist you, find a family member or friend you trust.
Communicating with Your Partner
Parkinson’s symptoms can be incredibly frustrating for the person living with Parkinson’s — they can also be challenging for your partner as well. They may have a hard time recognizing you as the same person before a diagnosis. They may feel that they are failing as a care partner or spouse because they are unable to form connections that they used to consider basic.
Communications issues between loved ones can increase caregiver stress and lead to burnout. Dedicate time to working on your communication. This can be devoting a weekly time to check in with one another, attending a support group together or finding a mental health counselor. When communicating becomes easier, life becomes easier for all involved.
Read our blog to learn about more about effective communication and tips for coping.
Family Member Resources
Browse our collection of materials for families and caregivers of those with Parkinson's disease.
Communicating with Your Friends
At some point, you will want to have an honest conversation with your friends about your Parkinson’s. Try to maintain connections with upbeat people who understand your condition and are willing to learn more and perhaps even lend a hand when needed.
Managing Work Life
Deciding when to inform your employer and coworkers about your condition is a decision only you can make. Telling your employer sooner rather than later has its advantages, especially if your symptoms start to get worse and begin to affect your performance. Hiding your disease at the workplace can lead to extra stress, which can worsen symptoms. If your speech is affected, others may begin to jump to conclusions.
Making your boss aware of your condition can allow your employer to accommodate any special needs. The American with Disabilities Act (ADA) requires employers to make reasonable accommodations for employees. The ADA defines these accommodations as “any modification or adjustment to a job or the work environment that will enable a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions.”
Talking to Your Employer
Listen to our podcast series about talking to your employer about Parkinson's disease.
Page reviewed by Dr. Tracy Tholanikunnel, Assistant Professor of Movement Disorders at the University of Florida, a Parkinson’s Foundation Center of Excellence.