Many people living with Parkinson’s find physical activities, such as walking, cycling and yoga, help them manage their symptoms. Yet few are likely to embark upon a 2,400-km pilgrimage. But Patrick Demoucelle has done just that.
Four years ago, Patrick and his wife, Anne-Marie, were considering where to travel with their young children during a holiday. On a whim, they decided to take a five-day hike from their home in Kraainem, Belgium, near Brussels, to the home of Patrick’s parents. All four of the Demoucelles loved it and wanted to continue — but with their next journey they would set a truly lofty goal.
Their chosen destination: Santiago de Compostela, Spain. Known as the Way of St. James, this undertaking has been one of the most important Christian pilgrimages since the ninth century, when the remains of the apostle James were discovered in the city. For the Demoucelles, however, the focus has been more on their experience as a family, and living with Patrick’s Parkinson’s.
On his 40th birthday, Patrick was diagnosed with young-onset Parkinson’s. This diagnosis would eventually lead them to “change everything,” when he and Anne-Marie quit their high-powered jobs to form their own firm. Today they think of themselves as “one man, one woman, one business, one charity.”
The Demoucelles’ profession revolves around providing motivational training to executive clients, primarily in Europe. Their philosophy — both in their professional and personal lives — embodies the power of think/able. Patrick says, “We’ve made the choice to be positive at least 99 percent of the time. While it’s not always easy, it’s a gift you give yourself.” Anne-Marie echoes, “You can see the impact Patrick has on our clients. If he can be so positive while living with this disease, they believe they can, too.”
The couple also offers their training services pro-bono to The Michael J. Fox Foundation. “Not only is MJFF dedicated to curing this disease, they’re working hard to make life more bearable for all of us living with PD now. So we want to help them be as effective as possible,” say the Demoucelles.
In 2012, they decided to further accelerate MJFF’s efforts through a substantial financial contribution from their Demoucelle Parkinson Charity. Say Anne-Marie and Patrick, “We invest in the organizations we believe can make a real difference.”
In their own lives, their family’s multi-year trek to Santiago de Compostela has given them a new sense of purpose. During every summer holiday, they take a series of one-week hikes, each time picking up where they left off. With less than 700 km to go, they most recently crossed the Pyrenees, entering into Spain. Says Anne-Marie, “Every time we say the last week was our favorite yet.”
For Patrick, the pilgrimage has allowed him to monitor the progression of his disease, and to focus on “the here and now.” He says, “Don’t give up, even when you’re ‘off.’ Walk backward if you can’t walk forward. Train your body to keep moving, and train your brain to think positive. Positive energy has a positive impact.”
In two years, the Demoucelles will reach their destination — Santiago de Compostela’s famous cathedral, where tradition calls for pilgrims to burn something. For Patrick, this will be a pack of dopamine, and the booklets of his medications. Their advice for other families living with PD? “Give yourselves little, realistic challenges,” says Anne-Marie. Patrick continues, “Even if it’s difficult at first, you’ll feel such victory.”