Welcome to Parkinson's? Oh my!!

July 1, 2017. Happy Canada 150+ day.

This is the long way to talk about how to deal with a diagnosis of Parkinson’s disease or any other chronic and/or debilitating illness. Please bear with me. Once upon a time I was a teacher of a college program called “Developmental Services”.  Once a year we invited a group of parents to come and talk about their children but especially their child who was diagnosed with a severe developmental or learning disability. Student feedback told us this was the most profound day of the school year when cliches and stereotypes tumbled down and were replaced with more real and helpful attitudes. Many a tear was shed and not only by the students. I and the other teachers had so much respect and admiration for those parents, mostly moms, whose lives had been shattered, we thought, by the arrival of a child with so many disabilities, it would change the families forever.

The parents spoke very candidly about their experiences and struggles, especially to obtain an accurate diagnosis and appropriate professional and personal support. One of the parents brought an article called “welcome to Holland”; it was written circa 1987 by Emily Perl Kingsley, also a mother of a child with disabilities. It can be found on the internet but I have not learned to incorporate those kind of links yet. Being a Dutchman by birth, I was intrigued by the title. Of course this was just a metaphor to describe the process of accepting a child with numerous limitations.

The gist of the story is that expecting parents are looking forward to a child who will develop normally, behave well, fit in with other children. Of course we want our children to be happy and responsible. We dream of them being successful and surrounded by loving people both as children and as adults.

Here is the metaphor: we want to go to Italy to experience the sunshine, the culture, the food and wine, the buildings build in antiquity, the beautiful artwork, frescoes and history. What is not to like? The day comes and we are pumped and ready. Passport- check, Euros-check, plane tickets- check, reservations-check. You get the idea. We’re on the plane, sleep a bit, have some mediocre food and we land. The captain says “welcome to Holland”. ‘What?’ We are supposed to be in Italy, there must be some mistake. No ma’am, no sir, you’re in Holland and you’re here to stay. Eventually you realize that you’re not in a terrible, filthy, dangerous place. You even come to appreciate Holland. It has tulips and windmills, beautiful flowers, ancient buildings, lots of museums, Rembrandt, wonderful food, great beaches. It’s not Italy but it’s not so bad. We may still occasionally yearn for Italy but are thankful for Holland. We have unique and positive experiences we would have missed if we had gone to Italy. End of metaphor.

It’s just a metaphor, so it only reflects part of the experience. Perhaps we only experience this acceptance when we come up for air from the intense feelings we have about being diagnosed with Parkinson’s or another illness. Perhaps Parkinson’s is different because it is a progressive (what a funny way to describe PD) illness that at best we can slow down but which will relentlessly take away our lives.

To go back to the metaphor, perhaps it goes something like this: We go to Italy but only get to stay a while, then we move to Switzerland and learn to appreciate the mountains, the cheese and yodelling. This time our family and friends come along. We may even make new friends. Again we and our “entourage move, this time to France.  Tour de France, Paintings and statues, wine, beaches, trains, Paris. We can get used to that. Next is Belgium with it’s beautiful old cities, Vibrant Brussels, Northsea coast and hill country. Perhaps our last stop is Holland (properly called the Netherlands). We’ve already looked at that. All together quite a trip, lots of challenges, great scenery, good company. End of metaphor (again) .

as one of my colleagues often said, life is a series of choices, we can accept the challenge, engage with it, learn about it, adapt to it, enjoy the enjoyable parts, even dance with it. Or we can run from the challenge, hide from it, let it have it’s way with us. I know which choice I made, bring it on.

Casey