Welcome to Parkinson’s Disease

I once heard a story on how we make plans for our lives, only to have them overturned. Kind of like planning to take a trip around the world and somehow you end up at the North Pole. This is my version of that story …

Life can be like planning for a once-in-a-lifetime around-the-world trip. In life, you plan for the college you want to attend. You plan for your wedding. You plan how many children you will have and more. You can liken it to a magnificent trip to seeing all the Seven New Wonders of the World.

You’ve scanned the internet for information. You’ve talked to others who have been and you pick their brains. You download all the information you might need and just in case you’ve missed something, you buy a couple of guidebooks to carry with you. You make all your plans for the places you’ll see: the Great Barrier Reef, the Great Pyramid of Giza, or Chichen Itza. First, you’ll visit the ancient Incan ruins of Machu Picchu in Peru.

Meanwhile, feeling unusually tired lately, you‘re counting on being rejuvenated. You count the days until you leave. The last several years of preparation lead up to the moment you’ve been waiting for. Your bags are packed and in the taxi. Everything will be perfect while you spend the next several months or more, traveling the world.

Tripping as you step onto the plane, you find your seat and settle in. Now, shaking (something you’ve noticed you now do even when you’re not nervous), you close your eyes but find it difficult to sleep, chalking it up to the excitement. Several hours later, the plane lands. You can hardly wait to breathe in the wonderful air of Peru. The pilot comes on the intercom and tells you that you may now take off your seat belt and, “Welcome to Parkinson’s disease!”

“Parkinson’s disease?!” you say. “What do you mean, Parkinson’s disease? I’m supposed to be Peru!” At least you weren’t re-routed to places with Ebola, The Black Death, or smallpox, as some were. You are in a different place, yes, but it could have been much worse.

Now you research for different information for this new season in life called Parkinson’s disease. You must learn a whole new lingo. Things like basal ganglia and dopamine and dystonia will become your household words.

Of course, this is not what you had dreamed of. Parkinson’s is a place where all the other things in your life have been, could be, or will be affected. Your marriage may change. Retirement may come sooner. Your kids may not understand. Parkinson’s disease. It certainly isn’t what you hoped for.

This life you will now live may be slower-paced than that trip you had planned. It may be filled with many unknowns. However, after you have caught your breath and have looked around, you will notice that Parkinson’s has something (in a roundabout way) good to offer.

It affords opportunities to see things differently. It offers the ability to deepen your level of compassion and understanding. It allows you to meet new people you would never have met if you had gone anywhere else. People who have been on a journey with this disease before you: patients, caregivers, movement disorder specialists, and more. It gives rise to a deeper faith.

However, others are busy coming to and from all the beautiful places you dreamed of going. They tell you about the wonderful time they’re having and from now on you will tell yourself,“Yep. That should have been me.”

The pain of that loss — your dream — may never end. You may never stop grieving for what you’ve lost and continue to lose, for the loss you can experience through Parkinson’s is a truly devastating loss.

However, if you spend the rest of your life (or even a part of it) commiserating that life isn’t exactly the way you had envisioned, then you may never be free to enjoy the very special blessings that this life has to offer. So …

Welcome to Parkinson’s disease.

It’s not what I had planned either, but here I am. I would much rather have been able to stay on course and make my way to The Seven New Wonders of the World, write to you from atop the Great Wall of China — but, alas, my Pilot had other plans. So, having come here before you or perhaps feeling a bit better than you are feeling, I am here walking with you. Welcome. Together under the guide of our trustworthy Pilot, we will forge through this unplanned journey and when we get to the end of this road, may it be said of us … “Well done, good and faithful travelers.”

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