How to Build Resiliency & Live Well with Parkinson’s

Resilience and Parkinson's

I can be changed by what happens to me. But I refuse to be reduced by it. – Maya Angelou

One of the most profound gifts that comes from working at the Davis Phinney Foundation is a chance to interact with the remarkable members of our Parkinson’s community. Despite the often frustrating diagnosis processes, physical setbacks and significant emotional ups and downs that the people we work with face, they have adapted and are thriving in ways that inspire us daily.

For example…

  • Karl Robb became a Reiki master and has been helping others heal for over 15 years.
  • Jon Lessin used his experience as a physician and a fundraiser for Parkinson’s to write a book called Tenacity to help others live well.
  • Jill Carson started the Parkinson’s Wellness Project as a way to overcome her depression and show others a path worth fighting for.
  • Kevin Schmid rode 4500 miles on his Peloton bike in 2016 and became a Davis Phinney Foundation fundraiser.
  • Dale George started a Parkinson’s support group in his community in order to offer a safe space for those living with Parkinson’s to share and laugh and learn.

And we have so many more stories of people who have turned their diagnosis from dark to light through the work they’re doing and who they’re being in the world.

What do all of these people have in common? They’re resilient.

Resilience refers to patterns of positive adaptation that follow a significant adversity such as a trauma, death, loss of a relationship, job loss, financial stress and/or serious health problems. Positive adaptations like the ones we’ve highlighted above.

Fortunately, we all have the capacity to be resilient; however, it’s not something we automatically are. It’s something we can become through our thoughts and behaviors. And, of course, through practice, which life, for better or worse, gives us plenty of.

While there is much debate in the literature on how to define resilience and what constitutes positive adaptations (is a resilient person functioning in a normal range or are they excelling?), through our work over the past 14 years, we’ve noticed five behaviors that significantly impact the resiliency of people living with Parkinson’s.

#1 – Get (and Stay) Connected

Positive relationships and supportive environments play a significant role when it comes to facing adversity. The better our relationships, the better our health, outlook on life and belief in our own self-efficacy. And the stronger our resilience. When we have solid relationships, we feel less stress when facing adversity and more capable of overcoming challenges.

Elliot Friedman, Professor of Human Development and Family Studies at Purdue University says, “If you stack having few social relationships against other risk factors—like smoking and obesity—not being socially connected is as strong a risk factor for death.”

We know it’s not always easy to reach out to others, to ask for help, to volunteer or to walk into a Parkinson’s support group for the first time, but for the people in our Parkinson’s community, it’s often been the difference between thriving and just getting by.

#2 – Take Control of What You Can Control

One of the central elements of resilience is perception.

And every traumatic event that happens—the death of a family member or close friend, an assault, the diagnosis of a chronic and degenerative illness—has the potential to be traumatic or not to the person who experiences it.

People living well with Parkinson’s have found a way to interpret the diagnosis as meaningful and that perception has prompted them to take actions that have improved and enriched their lives in ways they would never have predicted.

According to George A. Bonanno, a professor of clinical psychology at Teachers College, Columbia University, and the one who first began studying resilience as it relates to trauma and loss, we can make ourselves more or less vulnerable depending on how we think about what happens to and for us.

Along those same lines, Martin Seligman, considered the father of positive psychology, said that those who explain what happens to them by saying something like, “Instead of assuming my situation is fixed, I can change my situation”, are less prone to depression. In other words, the language we use has tremendous power.

What this means for us is that resilience is a set of cognitive skills that can be learned over time. And that just because we may not feel or be as resilient as we’d like just yet, we can certainly become resilient by taking control of how we perceive events and how we talk about them.

#3 – Adjust Expectations

If you’re like many of the people in our community, when you were first told you may have Parkinson’s, you grabbed a comfortable seat in front of a computer and started Googling until your fingers turned blue. (That is if you were diagnosed sometime in the past 25 years.)

Our guess is that not only did your searches deliver up some scary and very stress-inducing stories of people living with Parkinson’s, but they also served up stories about people who reversed their Parkinson’s, cured it or turned into an elite athlete because of it.

Those types of extreme stories can significantly impact how you envision the road ahead. Set your expectations too low and meeting them will feel like an empty victory. Set them too high, and you’ll face disappointment at every turn.

An important lesson we’ve learned from the most resilient around us is to let go just a little at a time. We don’t mean letting go of big dreams or letting go of the life you always planned. We just mean letting go of getting Parkinson’s “right.” And letting go of the idea that there’s such a thing as living perfectly with Parkinson’s.

Set yourself up for success by being okay with whatever you can do in any given moment. Set a goal to do a ride across the country and don’t beat yourself up or throw in the towel if you have a bad week of training.

Commit to going to boxing class a couple of times a week and feel strong and proud even if your body doesn’t fully cooperate each time you walk in the door.

Make a plan to retire or change careers and also be open to, and okay with, the possible messiness of the transition.

As you know, Parkinson’s is an unpredictable friend and its unpredictability may demand that you change your goals from day-to-day. The good thing is that when you’re able to do that with peace and ease, you’ll build your resiliency muscle along the way.

#4 – Plan for When You’re at Your Best

This may be the simplest and most accessible of all of the actions you can take to build resilience.

As a person living with Parkinson’s or someone who is a care partner to someone who has Parkinson’s, you’ve no doubt learned that you have good times and bad times, good days and bad days.

You have thoughts that make you feel alive, empowered and unstoppable and ones that drain you of all energy.

What we’ve observed from those who are able to thrive while living with Parkinson’s is that they accept ALL of those times as part of the broad experience, but they have become masters at taking advantage of opportunities when they’re at their best.

They exercise, run errands, work, connect with others and take on creative projects when they’re “on”. They welcome rest, alone time and help from others when their physical, cognitive and emotional strength weakens.

Being okay in both spaces is the victory. And feeling victorious, no matter how large or small the accomplishment, builds resiliency.  

#5 – Practice Self-Compassion and Acceptance

According to Kristin Neff, a professor at the University of Texas and author of Self-Compassion: Stop Beating Yourself Up and Leave Insecurity Behind, self-compassion entails being warm and understanding toward yourself when you fail, fall short, suffer or feel inadequate, rather than judging yourself harshly. This includes honoring and accepting your humanness even in the face of adversity. Neff argues that the more you open your heart to the reality that life is filled with suffering, and that everyone suffers, the more compassionate and accepting you will feel toward yourself and others.

Why is this important? Self-Compassion activates the caregiving system in our brain and prompts us to act, protect and care for ourselves. These positive pro-social emotions are the catalysts that help us to build better relationships, experience less stress and loneliness, be more creative, sleep better, be more optimistic and yes, increase our resilience.

Accepting a diagnosis of Parkinson’s—and all of the changes that it may bring physically, emotionally and mentally—is easier said than done; however, not doing so is an alternative that leads many people toward depression and apathy. When you’re in that state, you’re less likely to take the kind of actions that have the potential to profoundly improve your quality of life such as exercising, connecting with others and prioritizing your self-care.

Taken together, implementing these five behaviors may seem like a tall order; however, it’s also encouraging to know that they are well within reach.

If you’d like to become more resilient, and you don’t yet practice these skills, choose one to begin with and see how it goes. And remember, be kind and understanding toward yourself along the journey.

Further Your Learning

Later this week, we’ll be talking about where resilience fits in and the value of building psychological flexibility when some of the most complicated and often scary aspects of Parkinson’s show up.

Wednesday: How to Bring Light to the Darker Side of Parkinson’s: A Primer on Hallucinations and Delusions and How to Manage Them

Friday: Impulse Control Disorders and Parkinson’s: What They Are and How to Manage Them

Watch Season 2, Episode 1 of Parkinson Disease TV: Depression, Anxiety and Parkinson’s

Watch Season 2, Episode 4 of Parkinson Disease TV: Apathy and Parkinson’s


Want More Practical Articles Like This? 

Much more can be found in a powerful new edition of Davis Phinney Foundation’s free Every Victory Counts® manual.  It’s jam-packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Color coding and engaging graphics help guide you through the written material and point you to complementary videos, podcasts and other materials on the Every Victory Counts companion website. And, it is still free of charge thanks to the generosity of our sponsors.

Request your copy of the new Every Victory Counts manual by clicking the button below.

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Comments (5)

I have decided that Parkinson’s is like riding a bike “You have to keep moving in order to keep your balance. Also, a little sense of humor never hurts. Chins up folks we are not alone. I was diagnosed 8 years ago. At age 75 I’m not sure what is worse, the aches & pains of aging or the PD symptoms. Whatever. . . as Abraham Lincoln once said “A man is only as happy as he makes up his mind to be.”
As for me, I choose joy!

Thanks for the uplifting words, Yollie! Plus, riding a bike is a fantastic form or exercise that is scientifically proven to decrease Parkinson’s symptoms!

I would like to know how some people were able to stop or reverse PD. I am a former elite athlete but am having very difficult time developing and sticking to an exercise program.
Thank you for all you do – your program helped lifting me from a bad place 🙂

Thanks for commenting, Dale. Parkinson’s is progressive and the damage caused to the dopamine producing cells is irreversible. However, many people have found that they are able to slow down it’s progression by rigorous, high-intensity exercise. While everyone experiences Parkinson’s differently, plenty of research supports the numerous benefits to exercising on a regular basis. If you a struggling with sticking with a program, try asking as friend along. A buddy can keep us motivated, on track and keep us from missing a class on those days that are a bit harder than others. As you begin to exercise, keep a journal on the positive affects you notice in your mind and body. This way, you can see positive progress and refer back to it when you need some motivation.

Excellent reading for positive thinking and encouragement to take action

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