PD Outliers

The Power of Habit

Have you ever met a “PD Outlier”—a person who seems to have some special ability to manage and even thrive despite the disease? Here are a few that I’ve had the good fortune to meet and who have been kind enough to share their stories with me:

• Nan Little was diagnosed in 2008 at age 62. Since then, she has ridden the grueling 450-mile RAGBRAI bicycle race across Iowa six times, climbed Mount Kilimanjaro, trekked to the Annapurna base camp, hiked the Inca trail, and she has written a book about her experiences.
• Rhonda Foulds was diagnosed in 1999 and started running seriously in 2010. Since then she has run over 100 marathons. Yep, that’s an average of 10 marathons per year over the past 10 years! She reports that she is now over 20 years post-diagnosis and surprised at what she is still capable of doing.
• Steve Gilbert was first diagnosed with Parkinson’s in 2004 at age 59. Since then, he has achieved a level of fitness he never thought possible. He celebrates what he calls his “small victories”, which means such things as hiking the Inca Trail, running in the Masters 800m at the Drake Relays, and running his first marathon at age 66. He is now sixteen years post-diagnosis and still going strong.
• Renee Adams Trent was diagnosed in 2016 at age 47. Since then, she has run three marathons and often wins her age group in local races. Her doctor credits her running as the reason she continues to do so well.

In this blog post, we’ll take a look at how these four Outliers got started exercising and how they manage to stay motivated and keep moving. As we’ll see, it turns out that these four remarkable athletes share a similar approach and mindset—and this seems to go a long way in explaining their ability to thrive despite their PD diagnosis.

I’m not suggesting that exercise makes you a better or more virtuous person, but exercise is critically important for managing Parkinson’s.  In his book, “The Power of Habit”, Charles Duhigg notes that:

When people start habitually exercising, even as infrequently as once a week, they start changing other, unrelated patterns in their lives, often unknowingly. Typically people [who] exercise start eating better and becoming more productive at work. They smoke less and show more patience with colleagues and family. They use their credit cards less frequently and say they feel less stressed. It’s not completely clear why. But for many people, exercise is a keystone habit that triggers widespread change.[1]

If exercise is a keystone habit, it is even more so for those of us with PD. Renee put it best when she said that “Rest is Rust, motion is lotion! I find that fighting this disease versus waiting for it to take over my life is the best motivation! I run to live!”

Get Started

Put simply, motivation occurs when the pain of not doing something is greater than the pain of doing it. One is motivated when it’s easier to change than to stay the same.

Nan got started soon after diagnosis when she determined simply that she would not allow herself to be a victim. She harnessed the shock of the initial diagnosis to overcome the inertia of doing nothing.

It’s hard to overstate the importance of getting started. Who knows, you may find that you enjoy it. Indeed, many with PD discover that exercise simply feels good in its own right. Rhonda discovered early that exercise helped her feel better. For her, the equation was simple: the relief she felt from running made it less painful than not running. Similarly, Renee said that “the difference between my symptoms on a day with exercise versus a day without are super evident to me and so worth the work!”

Even if you don’t enjoy it at first, let that first step inspire the next one, and so on. Create your motivation by taking action.

Set Goals

Psychologists find that people are more successful in sustaining a habit when they establish a reward system to support it. One way to do this is to set goals. Rhonda strongly endorsed goals when she said “I also always set another goal for myself. As soon as I meet one goal I immediately set another one. That way I always have something to look forward to.” Goals don’t have to be overly ambitious: Nan said that she “sets a goal every day and works hard to achieve it, even if it’s just walking around the block.”

Make it Automatic

If your workout isn’t scheduled, every day you have to figure out when to go and summon the will power to follow through. Every day that you complete a scheduled workout you get the satisfaction that comes from achieving a goal. To prepare for the Mount Kilimanjaro trek, Nan and her husband developed a training program. In a similar vein, Steve credits his success with running later in life, including breaking five distance PRs in his 70s, to following in a disciplined marathon training schedule.

Some go so far as to think of exercise as a form of medicine, and as such make it part of their daily routine. In this vein, Rhonda said, “I get up every day and take care of myself according to a strict schedule of self-care, including exercise, vitamins, medications, rest, charging my DBS battery, and family time. This is the plan I’ve decided to keep Parkinson’s from taking over my life.”

Have a Strong Social Network

Each of our PD Outliers has a strong social network that supports him/her. Steve is passionate about the role that Rock Steady Boxing has had on his life, saying:

The music was loud, stuff we would tell our grandkids to turn down if we were home. Coach Rose would yell directions and encouragement (in many forms) as we encouraged and talked trash to each other. Once in a while, we just went to breakfast. The whole thing was incongruous to me—a bunch of mostly-old, mostly non-athletes going through intense boxing drills to fight back against Parkinson’s Disease. We kept coming back. It was addictive.

Nan is active both in Pedaling for Parkinson’s and Dance for PD, and both have helped sustain her over the years. She often refers to Pedaling for Parkinson’s as “a support group on wheels”. Rhonda says that she has been very fortunate that she has many friends from all over the world who support her running. Likewise, Renee said that her support group has been a critical factor in helping her sustain her exercise habit, saying that:

My running buds show up to almost every run I have. I will be training for a marathon and they may not be training for a race and they still show up. They also stick around to make sure I’m ok. (I’ve had a few falls) I know no matter how fast or slow I run, they will always be there! I feel great when I run and I feel all the love and support of great friends!

Find Strength amid Challenges

It is important to acknowledge that sometimes it is going to get tough. As Nan put it, “It can be uncomfortable at times,” and as Renee said, “Yes it’s hard, but the most rewarding things in life take the most work!”

When such moments arise, remember that the discomfort is temporary and only serves to make you stronger.

Ready to get started?

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[1] Charles Duhigg, The Power of Habit: Why We Do What We Do in Life and in Business (New York: Random House, 2014).

Thank you to Nan, Rhonda, Steve, and Renee for sharing their stories. Any errors or omissions are the responsibility of the author.

Photo by Drew Beamer on Unsplash

Christopher Lion is Managing Director at The Mather Group and was diagnosed with Parkinson’s in March of 2018, at the age of 54. He serves on the Board of Directors at Power for Parkinsons, and lives in Georgetown, Texas with his wife, Laura, and their two kids Andrew (17) and Sarah (15). He has competed in nine marathons and many other athletic events.