Three Things I Would Tell Someone Who Was Recently Diagnosed with Parkinson’s Disease

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1. Everyone experiences the disease differently.

Let me use myself as an example. As of now, I’ve had Parkinson’s for about fifteen years. My first symptom was that I seemed to have misplaced my sense of smell. Then I noticed that the buttons on the cuffs of my dress shirts had begun to conspire against me and my right hand and were making it nearly impossible for me to push them through the buttonholes. Then my handwriting became illegible. Oh, that was—and is—a huge frustration. My mind continues to generate ideas at random intervals, but after I attempt to write them down, I can’t read what I wrote. Every day, there’s another brilliant concept lost to humanity, forever! Or at least a list of what I need at Walmart or Home Depot. But I digress. The point is that while my right hand is becoming less and less of a team player, I still don’t have any tremors in my hands. Other PD folks might  have the opposite situation.

To continue. After my nose went on strike and my hand began to write in Sanskrit or something, things seemed more or less to stabilize for many years. Okay, it’s true that eventually all the other buttons on my dress shirts joined their comrades on the cuffs and began to resist mightily my efforts to push them through the buttonholes. Sometimes it takes me ten minutes to put on or take off a button-up shirt.

Once again, you probably won’t have exactly these same experiences. Your right hand might remain as useful as ever. But there will most likely be something odd happening to your body that will seem strange. A few of the more common developments (and I have them all) include these:

A.    Being told that you are very soft spoken. Now, I know it’s tempting in a society like ours, where everything bad is someone else’s fault, just to tell those folks to turn up their hearing aids. However, not only is that impolite, but it doesn’t go over well when the person remarking on your soft spokenness is only ten years old and doesn’t even know what a hearing aid is.

B.    Being told that your face is expressionless. Blunt affect, someone told me. I’m always tempted to scrunch my face into a psycho killer expression, and say, “You’re next!” but then, I don’t want to be invited downtown where I can spend a little time in a room with mattresses on the walls.

C.    Experiencing balance issues. Some people with PD have difficulty with their sense of balance. I, for example, often stand with a slight stoop to help maintain by balance. And while the stoop does keep from stepping backwards and from falling over backwards, it does quickly give me a backache. (That, by the way, is what they mean when they say life is a series of trade-offs.)

Again, your experience may not be like mine. You may go for many years experiencing only minor symptoms. As they say, your mileage may vary. So, if you’re just starting down the road, remember that you are embarking on your own personal life adventure. Just as travelers on the same itinerary visit the same locations but have different experiences, so too you’ll have some of the same complications but you will handle them differently.

2. Remember that you are not your body.

One of the dismaying things about Parkinson’s is that you—the you who lives inside of your body—will probably be watching your body become more and more uncooperative as time goes on. You’ll start to wonder why your legs grow increasingly rebellious when you want to get out of a chair or put your undies on. And don’t even ask me about getting out of a bathtub. But it’s your body that’s not following your commands. There’s nothing wrong with you.

And it’s possible that one day you’ll be leaning over a nice salad or taco mix, stirring it up really well, when all of a sudden a stream of drool will land in whatever you’re doing. Your first reaction will be surprise. “Did I just drool in the salad?” you’ll ask, astonished. The answer is, No, you didn’t. Your body, suffering from Parkinson’s Disease, did.

Eventually, you—I mean, your body—might start walking with small, shuffling, oddly flopping steps that make you self-conscious and, to be frank, embarrassed. But it’s your body that’s embarrassing you. It’s not you. Your body is a temporary habitat you live in. You are not  your body. And remember: we get new bodies in heaven.

3. You and the Lord need to open a lemonade stand. Parkinson’s is something of a lemon, all right.

But with God’s help, you can persevere and even flourish through your illness. It’s the sweetness of your response to personal challenges that turns lemon juice into very tasty lemonade. What better way, what better reason to bring your heart and mind and soul closer to God? People are watching to see how faithfully you respond to the burden that has come upon you. So don’t throw lemons at them, offer them some lemonade.

In the short story “Youth,” by Joseph Conrad, the character Young Marlowe faces a series of increasingly disastrous events: the ship catches on fire, the captain goes mad, the ship blows up. Each time, Young Marlowe says, in effect, “This is great! I can handle this! I feel so alive! I can’t wait to see what’s going to happen next!” His attitude should be ours.
Or as the apostle Paul would put it, “I can do all things through Him who strengthens me” (Philippians 4:13, NASB).

I’ll let our Partner in the lemonade business sum up for us: “I have told you all this so that you may have peace in Me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world” (John 16:33, NLT).