Raise Awareness

Building Well-Being Practices into Everyday Life with Parkinson’s

A group of people walking outdoors

Parkinson’s disease (PD) affects everyone differently and changes over time. Symptoms can be hard to predict and may fluctuate depending on factors like medication, stress and sleep. The pressure to adapt to changing physical abilities, as well as mood symptoms, such as depression, anxiety and apathy, may be overwhelming at times and lead to feelings of hopelessness. Whether you feel this way and are searching for a way forward or just looking to boost your overall well-being, there are everyday strategies that can help.

Below we highlight ways to feel more fulfilled, foster healthy habits and build empowerment and resiliency — all of which can help you adapt to the challenges of life with PD and improve quality of life.

1.    Find what is important.

For most, meaning in life comes from a combination of connection with others, hobbies, spirituality and work. Parkinson's can cause people to withdraw from meaningful activities and lose those connections — especially if getting to places or doing the things you love are becoming more difficult. This can create a sense of loneliness or even make life feel meaningless.

The first step in restoring meaning is to look at what matters most in life and what you enjoy. For some people, it’s spending time with friends or family or giving back to meaningful causes. Try to:

  • Carve out time to think about what you value.
  • Take a break from screens and social media to clear your head.
  • Focus on spending time with people or experiences that lift you up.
  • Start small — focus on little things every day that can add joy and meaning to your life.

2.    Pave the way to healthy habits.

Working gradually to create healthy routines around exercise, diet, sleep, medications and connection with others can help with quality of life. Work towards integrating these healthy habits into your routine:

  • Exercise regularly to help you move and feel better.

  • Eat a healthy, balanced diet that can provide energy and ease symptoms.

  • Create a consistent sleep schedule to give your body the time it needs to repair. 

  • Take medications at the same times every day to help keep symptoms under control.

  • Schedule daily touchpoints with friends and family to stay connected and engaged.

Convert health goals into routines in 3 steps: 

  1. Develop a cue or trigger that prompts you to do the behavior. For instance, leave your exercise clothes out at night to motivate you to exercise in the morning.
  2. Repeat the behavior until it becomes automatic. Be patient — it can take up to three months to form a new habit.
  3. Identify rewards that reinforce the behavior.

New habits often take extra effort and planning to take hold — especially if the behavior doesn’t come naturally to you. For some people with PD, forming new habits can be tricky since dopamine — a key part of the reward system — declines over time. Finding ways to cue new behaviors can remind you to stick to your goals. For example, plan to attend a new work out class with a buddy to stay on track.

For help identifying personal goals and any barriers getting in the way of forming healthy habits, consider cognitive behavioral therapy, a type of counseling that focuses on replacing negative thought patterns with positive ones.

3.    Believe in yourself.

You are in charge of your health and well-being. Studies show that believing in your ability to tackle life’s challenges may improve mental and physical health. This belief makes it more likely that you will pursue a goal, put in extra effort to accomplish it and stick with it, even if there are setbacks.

When experiencing self-doubt, let others inspire you. Read books or watch movies about people in similar circumstances and how they coped with their challenges. Reach out to a local Parkinson’s Foundation chapter or your neurologist's office to help find a support group that works for you.

You can also inspire yourself by remembering everything you have accomplished and overcome in the past. People are often more resilient than they believe. Most importantly, give yourself grace — coming up short from time to time is part of being human.

4.    Identify obstacles.

Up to 50% of people with PD will experience some form of depression, while up to 40% will experience an anxiety disorder. Caring for mental health and building emotional resiliency requires addressing PD mood changes — some of which require medication and talk therapy (psychotherapy).

Discuss treatment options with your doctor and look for a counselor or therapist if excessive worry or sadness, lack of motivation or other mood changes begin to interfere with daily life.

If you are trying to get back to an activity you love, write down your goals. What obstacles are getting in your way? Is there a way to simplify or modify an activity? For example, if you love baking but are struggling to follow a complex recipe, try getting out all the ingredients at the start and then putting away each ingredient as you use it. An occupational therapist can help you adapt your environment or find new ways to keep doing the things you enjoy.

5.    Take a team approach.

Whether you have lived with Parkinson’s two years or 10, building a support team can help you live better. When possible, seek expert care and rely on different types of experts to address your needs as they arise. A neurologist, speech-language pathologist, physical and occupational therapist, counselor and other healthcare professionals can offer comprehensive care. Contact the Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) to find professionals in your community.

Don’t limit your teambuilding to those who care for your health. Living with the challenges of Parkinson’s usually requires an “all hands on deck” approach. Look to your closest connections — people who are invested in the outcome of what you're doing — for emotional support. Connect with others also living with PD, whether in person or online, to unite with people that understand your journey on a personal level.  

Helpful Resources

The Parkinson’s Foundation is here for you. Explore our mental wellness resources now:

Educational Events

Live Fitness Friday: POWER over Parkinson's

Virtual ( Zoom )
1:00 pm to 1:45 pm EST
FREE
A man lifting two weights in a T motion

Join us for a class that combines PWR! Moves with strength, balance and mobility for exercise designed to improve posture, power and confidence. We’ll take balance to the next level, adding quick stepping drills to help you move fast when you need to, but stay on your feet like you want to. Recommended equipment for this class includes 2 small to medium weights (or soup cans or water bottles) and a chair.

Please keep a bottle of water nearby. Enjoy the session!

Instructors

Dr. Katie Wadland, PT, DPT, GCS, PWR! Moves Certified Therapist

Dr. Tami DeAngelis, PT, DPT

There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends and the community.

PD Health @ Home is presented by the Light of Day Foundation, whose generosity has made this programming possible.

Light of Day, Fighting Parkinson's, ALS, and PSP logo

This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.

Upcoming Events

Educational Events

Environmental Exposures in Veterans with Parkinson’s

Virtual ( Zoom )
4:00 pm to 5:30 pm EST
FREE
Veterans Webinar Banner

The U.S. Department of Veterans Affairs (VA) estimates that 110,000 veterans have Parkinson’s disease (PD). While the exact cause of Parkinson's is unknown, research suggests that its cause can be linked to genetic and environmental factors. This webinar will discuss how, for some veterans, environmental exposure and toxins can increase the risk of PD, and the role head trauma plays in the development of PD.

Speaker

Caroline Tanner, MD, PhD, Neurologist
The Center for Parkinson's Disease & Movement Disorders
San Francisco VA Medical Center

There is no charge to attend, but registration is required.

This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.

Upcoming Events

Educational Events

Veterans and Parkinson’s: Planning for the Future

Virtual ( Zoom )
4:00 pm to 5:30 pm EST
FREE
Veterans Webinar Banner

Advancing PD may bring the need for more planning to best address your care needs. In this session experts will discuss helpful tips on preparing for your future and making decisions regarding advanced care and treatments as a veteran living with Parkinson’s.

Speaker

Emily Hall, LCSW
Southeast PADRECC Senior Social Worker
Central Virginia VA Healthcare System

There is no charge to attend, but registration is required.

This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.

Upcoming Events

Educational Events

Veterans and Parkinson's - Managing Anxiety, Depression, and Apathy

Virtual ( Zoom )
4:00 pm to 5:30 pm EST
FREE
Veterans Webinar Banner

For veteran’s living with Parkinson’s disease, non-motor challenges are not always easy to discuss. With a focus on mood changes, including anxiety, depression, and apathy, this program will provide strategies for coping and talking about it with healthcare providers or loved ones.

Speaker

Megan Gomez, PhD, Clinical Psychologist
Tibor Rubin Medical Center
Long Beach, CA

There is no charge to attend, but registration is required.

This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.

Upcoming Events

Videos & Webinars

Anxiety and Parkinson's Disease

Feeling worried is an understandable reaction to a Parkinson’s diagnosis. But when feelings of constant worry or nervousness go beyond what is understandable, a person may be experiencing anxiety, which is more serious.

For more information on this topic, visit Parkinson.org/Anxiety.

Videos & Webinars

Depression and Parkinson's Disease

Caring for mental health is extremely important in Parkinson's disease (PD). Research estimates that at least 50% of people with PD will experience some form of depression during their Parkinson's journey and up to 40% will experience an anxiety disorder.

For more information on this topic, visit Parkinson.org/Depression.

Videos & Webinars

What are the Causes of Parkinson's Disease?

Scientists believe a combination of genetic and environmental factors are the cause of Parkinson’s disease (PD). PD is an extremely diverse disorder. While no two people experience Parkinson’s the same way, there are some commonalities.

Educational Events

How to Pay for Long-Term Care and Protect Assets for Families with PD

Virtual ( Zoom )
2:00 pm to 3:00 pm EST
FREE
Two family members hugging in front of a laptop screen

Speaker

Lauren L. Fink, PA
Shareholder at Maser, Amundson & Boggio

 

Lauren practices in the areas of Elder Law and Estate Planning, which include helping establishing estate plans for clients, long-term care planning, asset preservation strategies, planning with government benefits such as Medical Assistance and Veterans benefits, special needs planning, and probate and trust administrations.

Lauren chose to become an attorney because her parents were caretakers for many elders in her family. She saw how difficult their job was and wanted the tools to be able to act as a valued guide for others who care for elders. Lauren’s warm approach puts her clients at ease as she helps them develop a plan, making sure they are confident about their situations and futures.

Lauren obtained her Bachelor of Arts degree with a Major in English Literature from the University of Wisconsin – Madison, and her J.D. from William Mitchell College of Law. Lauren is the Vice Chair of the Elder Law Governing Council of the Elder Law Section of the Minnesota State Bar Association, and the Chair of the Education Committee of the Elder Law Section. Lauren is also the past President of the Advisory Board of the Minnesota Chapter of the Parkinson’s Foundation. Additionally, Lauren is a member of the National Academy of Elder Law Attorneys (NAELA), and the Secretary of the Board of the Minnesota Chapter of NAELA.

This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.

Upcoming Events

My PD Story

John Foley and family
People with PD

John Foley

My journey with Parkinson’s disease (PD) began at age 65, when I received a PD diagnosis. Doctors believe I had Parkinson’s for about four years prior to diagnosis. One chapter of my PD journey concluded with deep brain stimulation (DBS) surgery followed by programming and meeting with my neurosurgeon. My goal is to continue to enjoy adventure travel, cycling, photography and playing music with friends for as long as possible. There’s no doubt that DBS will add years of quality time to my life.

I began writing poetry as a catharsis for dealing with the disease and treatments. Up until my diagnosis, I had never written or even been particularly interested in poetry. Looking back, my brain’s response to the stress and adversity emerged in the form of poems that created an emotional vocabulary to express the disease at a visceral level. I never intended to share these poems with anyone.

Having come through the other side of the DBS process, and at the request of my neurosurgeon Dr. Kendall Lee, I felt it was important to share my work to give others a real understanding of the process of treating Parkinson’s with deep brain stimulation. This experience inspired me to write a book titled No Turning Back: Journey from PD Diagnosis to DBS Surgery. The goal of the book is to change antiquated perceptions about DBS as a treatment of last resort for people with PD.

I had the good fortune of working with Mary GrandPré, whose talent and artistry interpreted my words and infused a level of visual emotion beyond my imagination. I hope you will find this writing to be honest, raw, vulnerable and accessible. This is one patient’s experience with DBS.

I have also connected with the PD community through volunteering for the Parkinson’s Foundation. My daughter, wife and I volunteered for Moving Day Twin Cities in Minnesota. It was a great experience that we plan to repeat for years to come. We are also hosting a No Turning Back book launch event at the Walker Art Center in Minneapolis, with all ticket and book sale proceeds going to the Parkinson's Foundation.

Download a copy of No Turning Back

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