Articles written for various community newspapers in the Lower Mainland, B.C. and special interest print and online magazines

Thursday, November 3, 2011

One Woman's Battle with Parkinson's Disease on the Camino de Santiago

She felt the earth move under her feet. Her sky was coming tumbling down. But Hilary Whitmey continued to walk 25km daily with a 22-pound knapsack on her back and a walking stick in her hand that tapped the ground every few steps.

Whitmey covered nearly 250km of the Camino de Santiago that crosses Spain. Known in English as The Way of St. James, the 780km pilgrimage has been trodden for 1000 years and attracts more than 100,000 people every year. She followed yellow arrows and scallop shells painted on rocks, fences and roadways to mark the path.

She had been diagnosed with Parkinson's disease in 2004 at the age of 47. Less than a year later, she was following in the footsteps of the famous Christian apostle who gives the camino its name, nightly staying in pilgrim hostels – called albergues – where she rubbed down her feet with bag balm to prevent them from blistering and hand-washing and drying the one change of clothes she carried with her.

Thousands of people walk the Camino each year. Some walk for the sheer physical pleasure or historic adventure. Others undertake it as a religious journey or spiritual quest. Still more are travellers or environmentalists.

For Hilary, walking was a way to find the strength to come to terms with a life-changing illness that would see her body physically deteriorate.

It was a strange decision, she said, because at the time, she hated walking. “It didn't go fast enough,” said the former crown attorney and single mother.

Meeting with a group of women from her church, they trekked a leisurely 5km for two months to train for the traditional route that begins in Saint Jean Pied-de-Port, France and ends on the west coast of Spain in Finisterre. The conditioning proved to be enough to get their muscles primed for the walk.

As the departure date drew nearer, she incrementally added boulders or books to her backpack to simulate the weight she would carry for the two-week voyage. One woman had to withdraw from the commitment due to a back injury and the other was in the advanced stages of cancer. Hilary ended up on a flight with one other woman she barely knew.

Going into the trip, Hilary wasn't afraid that the Camino would be too challenging, that her backpack would be too heavy, that she might injure herself or not get along with the talkative woman who would accompany her. What weighed most on her mind was how she would face her new life.

“I hadn't told anybody, not even my family. My biggest fear at that time was that it would define me and people would only know me as a person with Parkinson's so I didn't want anyone to know. I wanted to hang onto the last vestiges of Hilary,” she said.

It turned out that Parkinson's wouldn't be the only thing to change her.

On the Camino, Hilary encountered many people who were similarly searching and finding meaning for whatever difficulties they were going through.

“It affected the way I encounter people. I deal with them differently now. I learned on the Camino that everyone has something they're trying to overcome. One fellow didn't have an arm and he didn't say anything but I sensed maybe that was something. One fellow, a psychologist, told me about an illness he had where he couldn't speak for several months and he was told it was stress-related,” she said.

When the walk was physically challenging, they stopped short of their destination and found another albergue. The section of the trail that lead over the Pyrenees mountains was the most challenging and, since it was early in the trip and the trail slippery, they opted to take a bus.

The downfall was the weight of their backpacks which made upward hiking more difficult. Ideally, their packs should have been two pounds lighter, she said.

“The worst was the hills. Before O Cebreiro was the most challenging. I was sometimes hot and tired and cranky, especially on a hill.”

Coming home in peak physical and emotional shape, Hilary wondered whether she would be able to carry the experience into her day-to-day reality.

“I didn't expect to be healed, but I came away more at peace with the diagnosis,” she said.

What she now had was a new friend in her Camino partner and a meditative exercise to turn to as the illness advanced.

Hilary went from Astorga to Santiago de Compostela, a distance of 228 km in October 2005. In early 2006, she told her only son Adam the secret she silently wrestled with through the peaks and valleys of the Camino. In 2008, she returned with her Camino partner to complete the 264 km portion of the journey from St. Jean to Burgos. However, a lower leg injury prevented her from finishing and she took a bus for the last 10 km.

Looking back at pictures seven years later, she trembles with more than the tremors that have overtaken her body and reduced her to walking with a cane and with the help of someone's arm.

She would love to do it all again - all 780km of it - start to finish.

Courses for New Grandmothers

Perhaps you've been patiently waiting for what seems like forever to become a grandparent. Finally, it is happening. The due date is circled on the calendar and you're counting down the days.

Then the trouble starts. Your daughter-in-law thanks you for the disposable diapers but says she will be using cloth diapers. She appreciates your opinion, but won't vaccinate her newborn.

Or perhaps you were finally beginning to enjoy retirement and now you are called on to babysit three nights a week and your exotic plans to travel are dashed.

Raising kids was a handful. But having grandkids is supposed to be fun, isn't it? You thought you would be a natural at the role but things aren't turning out as you'd hoped.

Well, now there are crash courses in modern grandparenting. Enter the word into a search engine and you will find online forums, classes offered by hospitals, organizations that provide counselling and even granny blogs. There is a litany of information from modern car seats and strollers to the current trends in parenting.

Rosalyn Kaplan, director of The Seniors' Centre at Simon Fraser in Vancouver, has asked herself many questions about the issues of grandparenting, both as a seniors' workshop facilitator and as a soon-to-be grandmother.

“For many people, what they felt they were going to do and what the reality is, is totally different. They have no idea what to expect because they looked at it from what they perceived their parents or their grandparents did and their worlds' shift. ” she said.

The reality, as she sees it, is that the role of grandparents is changing. The median age of grandparents in Canada is 55. The majority are still in the workforce and will be staying in the workforce longer as the economy changes and life expectancy gets longer.

“Our expectations of what our roles are and what our children's expectations of our roles may in fact be a little bit different so communicating that is very critical.

Another factor is the huge variety of parenting styles that were taboo 30 years ago.

“Grandparents in today's age are facing so many different choices that their children make – it may be that their children aren't married, it may be same sex couples, interracial couples, so there's a whole variety of today's issues grandparents are facing that past generations had not faced,” said Kaplan.

“It's hard for these grandparents to really respect the space of their children and I think open communication might be very critical. We may not approve of their choices for ourselves but we have to work very hard to allow our children to make these important choices for their family because, in fact, it is their family.”

Rather than provide ongoing advice because you've been a parent yourself and so know better than your children who are doing it for the first time, the primary focus should be to provide assurance and love, and passing on values and family history to the children as they get older, Kaplan said.

Although she is expecting her first grandchild in January, Kaplan hasn't yet taken a grandparenting class. “I don't think I'm going to. I think I'm going to just see how things go, with my eyes wide open, of course.”

She sees the classes mainly as a refresher to reinforce things grandparents already know.

“As grandparents, we just want to be able to love that infant and the toddlers and the teenagers as much as we can and I'm not sure that the classes necessarily will teach us that.”