Video games, text messaging, sports, the arts, extracurricular activities and clashes with societal values seem to have effectively elbowed the Scouting movement from its prominence in Western culture. Perhaps it is just me mourning the loss of the “good old days”, but growing up I could not have asked for better preparedness training than the Boy Scouts. Be prepared. An anachronistic sounding isn’t it? It is like an old three-mast sailing ship that has been cut adrift, left rudderless and dragging its anchor, easily left behind by the sleek and sensual seagoing craft that dominate the busy seas of entertainment, relevance and life’s demands. Be prepared? What does it mean? Prepared for what? Who has enough time to be prepared? Things are changing so fast no one can possibly be prepared.
Seven years ago, January 19, 2006, I was diagnosed with Parkinson’s disease. I was, to say the least, unprepared. Emotionally, relationally, professionally and medically I had no clue what I was in for. Of course, Parkinson’s disease is different for everyone who hears the words of that unfortunate diagnosis. Unfortunately, in recent years I have found my busyness easily eclipsed the solid fundamentals of preparedness. Indeed, that Thursday, 2568 days ago, left me grasping for life-bouys just to keep from drowning in the overwhelming implications of my PD diagnosis. It still does in some senses. But, slowly, I’m learning.
Like I did when I was 14. It was 1966. I had long since graduated from the “dib, dib, dob” of Cub Scouts, and was moving through Boy Scouts into what was then called Queen Scouts (shortly after renamed to Venture Scouts). One of the key challenges (badges) barring entry to what was then the highest level of Scouting involved a 72 hour “wilderness” survival camping trip. Accompanied by an older scout, Brian, I had to be prepared to navigate using a map and compass, build a bivouac from entirely natural materials, and survive on a very minimal and basic food supply accompanied by berries and edible roots, leaves and other flora discovered along the way. As well, I had to know first aid, the constellations, and the names of birds and animals we encountered. Perhaps the greatest challenge was to light a fire without a match and keep it alive. As I recall, the journey was a distance of some 20 miles or more through some pretty rough terrain. I remember much of the route to this day. I also remember being tired and quite hungry when it was over. It had tested my skills, my endurance and my preparedness.
In some senses, we cannot be prepared for the eventualities of living. It is often a journey that is full of surprises. Although other people with Parkinson’s have walked the path way ahead of us, they will have experienced it differently. But, just like a Boy Scout on a wilderness survival camping trip, dealing with Parkinson’s disease requires some preparedness.
How can we prepare to deal with a chronic, currently incurable, degenerative and debilitating disease with all its variables, offs and ons, shaking and freezing and ever-changing regimen of medicines and therapies? As a fellow traveler on this journey, let me share seven things I have learned in the seven years since my diagnosis.
- 1 Don’t try to go it alone. There is no need to. Let someone else walk alongside you. If not physically present, a companion who is electronically present can help. For safety and sanity, stay social, stay connected.
- 2. A map used by others can be a helpful tool, even if not perfect. Reading about, listening to, communicating with other people with PD can provide encouragement and advice as to how they made their way along the pathway. Their experience, their map outlining the way they went, can be incredibly useful in plotting your own course.
- 3. Sometimes all you need to know is the direction you need to go. A compass is a simple instrument that points True North. Just like the key principles in your life, it will point you in the right direction. When you’re feeling lost the map may not help you. But a compass will orient you. Keep your eye on the direction you’re heading, the important values you believe in.
- 4. Have a place of shelter. In survival camping you learn to make a shelter under varying circumstances. When darkness falls or inclement weather approaches, a convenient sheltering tree, rock overhang, or even a cave (uninhabited you hope) can provide shelter. Finding a place of comfort when it’s time to stop and rest is important for our soul. Where do you retreat when the storms roll in and it is difficult to keep going? Find a place.
- 5. Treat your body well. Eating, exercising, and resting are all fundamental to enduring our battle with Parkinson’s, just as they are to enduring survival mode camping. Having the disease is like being in a wilderness where the fundamentals are sometimes difficult to maintain. Take care yourself.
- 6. Learn what you can. Being on a wilderness hike provides the opportunity to observe and experience in special, even unique, ways. Parkinson’s disease provides similar opportunities to discover the unique abilities of our bodies, and how those same bodies can react to disease. But it’s not just the disease that we can study. It is how we can fight, and even conquer, its effects. The more we know about our ailments, the more we know how to respond to them.
- 7. Finally, when you’re tired, discouraged and have limited desire to carry on, persevere anyway. We need you to keep the fire alive, grit your teeth and push harder along the journey. Even if no one else notices, be your own hero. Take each day as it comes, with its challenges and opportunities, and makes the most of it.