Getting Support

After processing the emotions that came with a Parkinson’s disease (PD) diagnosis, you may or may not have thought about what comes next.

In addition to finding and building your care team, living well with Parkinson's also requires finding and getting the support you need — in all areas of your life. Remember, support does not have to come solely from a spouse or a family member, it can come from building your PD support community.

Build Support into Your Care Plan

Figuring out Parkinson’s on your own can be frightening. Even in the early stages of the disease, when your symptoms may be subtle, having a strong support network will be extremely helpful in helping you live life to the fullest.

First, think about your needs — both emotional and practical. Once you've sorted them out, you can go about recruiting close friends, neighbors and relatives who may be willing to help.

Although confiding in others is a good idea, expecting more of people than is reasonable will not be helpful and can lead them to burnout. Be sure to build your support system around more than a few people. Cultivate social ties that will allow you to call upon a variety of trustworthy people for different reasons, at different times. That way, you give yourself more options while lightening the load carried by those closest to you.

Finding the Support You Need

Some people newly diagnosed with Parkinson's avoid participating in support groups because they do not want to come face to face with what they fear will be their future. Keep in mind that not all support groups are the same. Meeting people who have handled Parkinson’s-related problems with success is a good way to build your own confidence.

Find a group that works for you — remember to explore virtual support groups. To find a support group in your area call our Helpline at 1-800-4PD-INFO (1-800-473-4636) and ask your doctor’s office.
If you are single or live alone, building a support system may seem daunting at first. Take it one step at a time. Develop close relationships — online, in your neighborhood and in the community. Consider joining a PD exercise or wellness class, a church or congregation and start attending a support group. These are good opportunities to connect with people who may become part of your support network. If you live in a rural area, or have limited mobility, try online programs and support forums.
Keep in mind that your support system will continue to evolve over time to meet your changing needs. Regardless of how big or small your circle of support is at any given time, there are certain needs that will always have to be met. Creating a list of people you can count on day in and day out can be very useful to you as well as those involved in your care. For instance, chart out who you will call when you need a ride, if you have questions about Parkinson's, or you just need someone to listen to your concerns.
Ideas for building your support team can include:
- Spouse/ life partner/boyfriend/girlfriend
- Parents and in-laws
- Adult children
- Close friends
- Neighbors
- Co-workers
- Minister, priest, rabbi, imam
- People from your place of worship
- Other people with Parkinson's disease
- Support group members
- Social worker
- Mental health professional

Stay Engaged and Active

Get and stay connected to the Parkinson’s community. Attending events — virtually, too — can help you meet others and learn more about living well with Parkinson’s.

Find online educational and wellness events. Register for new, weekly PD Health @ Home events designed for people with PD and care partners. Learn relaxation techniques, hear from experts and check out our PD fitness videos (live and on demand). Learn more.
Connect with us on social media. We love when you comment on our Facebook, Instagram and Twitter.
Volunteer. We can connect you to a Parkinson’s Foundation volunteer opportunity. Complete our volunteer interest form.
Keep moving. Join us at your nearest Moving Day, A Walk for Parkinson’s and meet others in your community. Find an event.
Listen to our podcast. Every episode features a PD expert and discusses the latest PD topics, treatments and research. Listen now.
Schedule a weekly call or FaceTime session with a family member or friend to stimulate the day. Reach out to new people every week.

Page reviewed by Dr. Tracy Tholanikunnel, Assistant Professor of Movement Disorders at the University of Florida, a Parkinson’s Foundation Center of Excellence.

Build Support into Your Care Plan

Reach Out

Start Where You Are

Plan

Members of Your Support System

Stay Engaged and Active

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