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    • #18298
      Robert Harris
      Participant

      [Opening Note: I’ve had Parkinson’s Disease since about 2005, but I’m only now noticing significant changes (that is, faster changes). I think we can use humor to fight (?) or tolerate this disease. Therefore,  I will post some items that I hope will bring at least a smile to the faces of my fellow Parkies. No offense is intended. If you don’t like the humor, stop reading and go to another posting.]

      Three Things I Would Tell Someone
      Who Was Recently Diagnosed with Parkinson’s Disease
      Bob Harris, August 24, 2016

      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. Another brilliant concept lost to humanity, forever! Or at least a list of what I need at Walmart. 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).

    • #18299
      Robert Harris
      Participant

      Ten Things Parkinson’s Disease Has Taught Me
      Bob Harris  July 13, 2016, revised March 16, 2020

      Yes, Parkinson’s Disease has taught me many valuable facts, about myself and others. Indeed, a Parky can see the world and others in it in a totally unique way (and that’s not just because we are stooped over when we stand or walk). Anyway, here are some things I’ve learned, courtesy of having PD.

      10. I’m on the way to becoming irresistible to women.
      They say women are attracted to men who are tall, dark, handsome, and soft spoken. Everyone keeps asking me to speak louder. And when an attractive young woman looks at me and says, “Huh?” I understand that to mean that she is quickly growing romantically interested in me because I’m being so polite as not to yell or whistle at her. (Leave that to the construction workers.) . After all, why else would she pretend not to hear what I said, when she’s only three feet away? That must mean I am indeed soft spoken. And that’s already one-fourth of irresistibility. All I need now is elevator shoes, hair dye, and a little plastic surgery. Then again, I guess I’ll pass, because I’m already happily married. (And she regularly says, “Huh?”, “What was that?”, “Say that again,” “Say that over,” and so forth. How she must love me!)

      9. Even with a blunted affect, I still can’t play poker.
      A blank facial expression might be good for poker, but for me, it makes people think I’m uninterested or bored, when the fact is, at best, I’m quite interested and at worst, I’m usually only thinking. And I don’t even know how to play poker. I just have the same poker face all the time. Except when I laugh. I need to laugh more often. Oh, another thing I’ve learned from having PD is that many things have several names. (Have you ever read a Russian novel, where each character has at least three names?) “Blunted affect” is also known as “masked face,” “facial masking,” and by professionals, “hypomimia.” Developing this symptom of PD can be somewhat unsettling when the Parky learns unexpectedly that he or she has it. “Have you met Bob?” “Not formally. He always looks completely bored.” “Oh, I think he always looks angry.” “I wish he knew how to smile.”

      8. I am not my body.
      The person I’m talking about when I use the word I is not the same as my decrepitating body. I have to live inside it, and let me say it used to be a much more fun and comfortable home than it is today. Not only is the house showing wear from 65 plus years of weather and neglect, but Dr. Parkinson has come in and is in the process of smashing up the place. But I’m still sitting by a warm fire in spite of a drafty house.
      To change metaphors, my body is a car and I am the driver. The car is an older model, so that today, the radiator leaks, the engine isn’t running on all eight anymore, and the tires are going flat, but the driver is still fine. The driver just can’t go as fast as he used to. Sometimes he can barely get out of the driveway.

      7. Feeling frustrated doesn’t make anything better.
      You know, it’s kind of aggravating when my mind tells my legs to lift me up and all they can say is, “That’s above my pay grade. Let the arms do it.” I tell my legs that they are very muscled, but they say, “What’s it to ya?” And that chronic back pain; that gets old after a while. And then there’s my diminishing ability to use my beloved tools. My right hand is getting increasingly uncooperative, so now I can’t seem to make a pair of pliers do what I used to do with them. And the left hand has to help the right hand just to screw in a light bulb. But getting upset over all this doesn’t make a difference, so why bother to get upset? Besides, not many people like a grump. (And let me tell you a bizarre truth. Some of the antiparkinsonian drugs can cause compulsive behavior, such as eating all the time, gambling—and shopping. That’s me, the shopper king. For a long while, I soothed my compulsion by regular visits to the dollar store. But I’ve noticed that as time goes on, I have the irresistible urge to buy tools, just as my ability to use them diminishes. I refuse to tell you how many screwdrivers I have.)

      6. I don’t take anything for granted.
      My handwriting is already comical. Maybe I’m writing in secret code and I just don’t know it. I dare you to try to decipher it. But how much longer will I be able to type, even with my clumsy, disobedient fingers that insist on leaving out some letters and doubling others—even in the same word. But I can still type, sort of—if you don’t mind three g’s in every word and maybe an extra f or two. (You can surmise how much editing I have to do on everything I type). But the amount I can still do is a blessing. And then there are those rebellious buttons that fight me every buttonhole. True, they no longer cooperate the way they did years ago, but, eventually, I can still button a shirt. This, too, is a blessing. In fact, I see every good thing as a distinct blessing, and not as an entitlement. Life is good—increasingly awkward, but good. Whether I eat a 99-cent taco or a prime steak, I’m content—no, make that happy. Grateful and happy. Some people take their health for granted. Big mistake. Next time you’re glum, just sit down and count your blessings. Let’s see, safe water supply, sewer system, reliable electricity, cell phones, bubblegum, paved streets, “warehouse” stores, green olives, first-world medical care, the beauty of nature, potato chips, air conditioning, and on and on. Your life stinks? You have hot and cold water, available on tap, soap, washrags, shampoo, towels, clean clothes. . . .

      5. I have a lot more compassion for the handicapped.
      I’ve learned that we shouldn’t judge others by using ourselves as the standard of measure. We can’t fully understand what others are going through unless we ourselves have the same situation. I feel as if I’ve been put into a body that doesn’t belong to me. I ask, “Why is my body stumbling around?” and “Why does my tongue stumble, too?” and “Why is my handwriting so small? Is there a paper shortage only my hand knows about?” Or is my body being my friend, knowing that my handwriting is illegible, so might as well make it small. It serves no purpose other than to fool the speaker into thinking I’m taking notes. And Yes, I feel awkward and conspicuous when I walk around. Slight stoop, uneven small steps. Now I know how other people feel who aren’t young and agile and “normal.” God bless them. So, less judgment, more empathy.

      4. There’s no “Why me?” here.
      When something bad happens to some people, they ask, “Why me?” when the real question is, “Why not me?” We’re told that in this world we will have tribulation. And while we’re quick to ask, “Why me?” when we get sick or hurt ourselves, how come we never ask, “Why me?” when we’re eating lobster on a vacation cruise or even licking an ice cream cone at home? Maybe we should all get into the habit of answering the “Why me?” question with, “Because you’re special,” or “I guess because you seemed like a good choice.”

      3. We can’t predict the future.
      Seems as if every time we expect a high fast ball, we get a low curve ball instead. Here we are, afraid of a future that probably will never come, and completely unaware of what is really going to happen. The fact is, only God can see around corners; we can barely see in a straight line. Maybe we should take the hint and trust God for our future instead of trying to outguess him. Of the 100 things you grind over with worry, angst, and insomnia, only one or two will ever be likely to happen. But all 100 will hurt you as you stress and complain over them. Remember, if fortune tellers could really predict the future, they wouldn’t have their businesses in tiny, old buildings in the not-so-glamorous areas of town. The would be living in Maui or Switzerland and playing the stock market—or currency futures.

      2. I am now more aware of my mortality, and that’s a good thing.
      Did you ever notice that when people get all worked up (courtesy of the media) and begin to panic and run around like chickens with their heads cut off, all they can do is stockpile food and weapons and toilet paper? And when you ask them what’s the worst case scenario, they say, “We’re all gonna die!” Yep, we’re all gonna die. They are absolutely right. But we knew that already. We just haven’t been thinking about it that much. And until or unless the Lord calls our attention to it in a quite personal way we won’t get a clue. But when you get a NOTICE of COMING DEATH, you have the opportunity to do some planning and thinking, and communing with your maker. Gonna die. Check. Got it. Getting ready.

      1. I still have hope.
      I was at a meeting a little while back when someone asked me, “How can you have hope, knowing that you suffer from a terminal disease?” My first answer was, “Life is a terminal disease.” But the better answer is that I have hope in God, who made me, owns me, and can unplug me whenever he wants. Learning to trust God, and to place your hope in him, might require a lengthy effort, but once you get there, you can find joy in any circumstance. So, I have hope—not that I will be cured, but hope for the kingdom of God. And hope for strength during the remainder of my stay here. It is said that instead of asking God to remove the mountain in front of us, we should ask him to teach us to climb mountains. And in the meantime, put our hope in the peace and rest we’ll find at the top.
      The Bible is a good place to find out about our hope. Isaiah tells us:

      Do not fear for I am with you;
      do not be afraid, for I am your God.
      I will strengthen you; I will help you;
      I will hold onto you with My righteous right hand.
      —Isaiah 41:10 (HCSB)

    • #18301
      Robert Harris
      Participant

      My Name Is Bob, and I Don’t Have Parkinson’s
      Bob Harris March 16, 2020

      So they look at me and notice some things about me and say, “You have Parkinson’s Disease, don’t you?”
      To which I say, “No. I don’t have Parkinson’s Disease.”
      And they say, “Then why do you take little shuffling steps and sometimes freeze and can’t decide which foot to step out with next?”
      And I reply, “Oh, I understand your confusion. My legs have Parkinson’s. That makes them often uncooperative. I don’t like it when they shuffle like that, but what can I do?”
      So they say, “Well, if you don’t have Parkinson’s, then why do you sometimes slur your speech and drool and talk too fast and so softly that people can barely hear you?”
      And I answer, “Don’t you see? All those effects are the result of my mouth having Parkinson’s. I keep telling it not to slur or talk too fast or too softly, but it just doesn’t pay attention. I just have a disobedient mouth. That’s common in mouths with Parkinson’s Disease. Uncooperative to the core.”
      So they say, “Oh, I get it. I suppose the reason you no longer have a sense of smell is not because you have Parkinson’s, but because your nose has Parkinson’s; and the reason you have tiny, unreadable handwriting is not because you have Parkinson’s, but because your hand has Parkinson’s.”
      And I say, “Yes, you’re catching on. Now you understand when I say that I don’t have Parkinson’s.”
      And they say, “Then what’s wrong with you?”
      And I say, “Nothing is wrong with me. After all, I’m still me. I’m not my body. I’m Bob.”

      “That is why we never give up. Our physical body is becoming older and weaker, but our spirit inside us is made new every day. ”  —2 Corinthians 4:16

    • #18303
      Robert Harris
      Participant

      My Parkinson’s Disease is Not Progressing
      Bob Harris, Original: August 22, 2017, update, March 16, 2020

      They have it all wrong. In fact, they’ve got it backwards. And I find that positively retropulsive. (Did you get that joke? Huh? Huh? Retropulsion is the fancy term for those little backward steps some of us Parkies take, to prevent us from falling over backwards.)
      Sorry for the pun on retropulsion and repulsive, but this terminology zoo we are in is positively confusing. (Or is it negatively confusing?)
      For example: It’s one thing for me to notice that I’ve become a bit more unstable on my feet, or that I’m beginning to slur or stutter occasionally, or that my muscle control is lessening a bit. But when I’m told that this means that my disease is progressing, it gives me a headache.
      I mean, look up the word progress in the dictionary. “Progress: gradual improvement, betterment, moving forward, ascension, advance, enhancement.” Enhancement? This describes my physical diminishment? In that case, then, eventually I will likely be enhanced so much that I won’t be able to move.
      Wouldn’t it be better for me to choose a word instead that indicates a decline or loss or worsening? What about decrepitating? You know, like that old car you kept too long? I could say, “My Parkinson’s Disease is decrepitating”?
      Or how about, dilapidating? Like that old gas station that between thieves, kids, and the weather, gradually just fell apart. Imagine working as a Walmart greeter.
      “Welcome to Walmart. How are you today?”
      “Oh, I’m still dilapidating. Thanks for asking. How goes it with you?”
      Maybe declivitating is the right term. Picture this:
      “Welcome to Denny’s. How many guests?”
      “Two non-smoking and one declivitating, please.”
      I mean, let’s be realistic and use the right words. Saying that our Parkinson’s is progressing makes it sound as if it’s going to conquer us. And we won’t let it do that.
      We trust the Lord that the best part of life is ahead, because we get new bodies in heaven, and they will obey our commands. They’ll walk easily, speak clearly, and feel full of energy. That confident hope sustains us, no matter how much our disease “progresses.”

      “Behold, I tell you a mystery; we will not all sleep, but we will all be changed. For this perishable must put on the imperishable, and this mortal must put on immortality.”
      —1 Corinthians 15:51, 53

      “In the world you have tribulation, but take courage; I have overcome the world.”
      —John 16:33b

    • #18310
      Ally
      Keymaster

      Bob, you’re awesome – thanks for sharing all of these posts!! I love your positive attitude and I think humour is a great antidote to any difficulty. I am going to return to these posts when I need a reminder to shift my thinking in a more positive, less serious direction. 🙂 Have you always been a comedic writer?

      I noticed you included some scripture passages at the end of your posts, too. Is your faith important to you? Has your faith been strengthened (or challenged?) since being diagnosed with PD?

       

    • #18313
      Robert
      Participant

      Thank you Robert!  Well said.

      Robert C

    • #18314
      Mara Edwards
      Participant

      Thank you Robert! Big smiles, big laughs!

      Mara E

       

    • #18315

      All your posts have been a delight to read.  Some great insights and ideas to ponder!!!

    • #18320
      Robert Harris
      Participant

      Got Pills?

      Bob Harris, March 17, 2020

      Scene 1

      My father, who was a medical doctor in his prime about seventy years ago, used to say about someone he found utterly distasteful, “He is just a pill,” or “That woman is a pill.” I use the word “distasteful” intentionally. Many pills in those days were just stamped out of powdered ingredients and sold uncoated to the hapless public. Needless to say, they weren’t exactly crafted for taste. Yes, pills tasted horrible, no matter how quickly you tried to swallow them. (If you want to share the experience of patients of yesteryear, next time you  have a headache or an aching back, take two uncoated aspirin, like the ones you can get from the dollar store, and chew them up before you swallow. Mm mm, good.) So when my father said, “That last patient was a real pill,” listeners could nod in knowing agreement. They knew bitter as a reality, not just a metaphor.

       

      Scene 2

      But you know, in those days it wasn’t so bad. First, in the old days, when someone had a headache, they were often prescribed the inhaling of coffee vapors. In the era after that, if you had, say, a bullet wound, you were offered a stiff slug of whiskey and the soft lead end of a bullet to grit between your teeth (hence the expression, “bite the bullet”). After that, when aspirin became available, it was sold in powder form. You had to be really sick in order to want to run a mouthful of that stuff across your palate. Still, that was a leap forward for the medical profession, and soon coffee aromas and lead-and-whiskey applications were forgotten. So the availability of the drug in pill form was considered a major advance. Think of how many billions of APCs (aspirin, phenacetin, caffeine) were consumed by the military (until the 1960s, when phenacetin was banned because it can cause kidney disease and cancer).

       

      Scene  3

      In my fifties, I worked as an instructional designer for the call center of a mail order pharmacy, where I created training materials for the customer service representatives. Since our reps were mostly in their twenties, we knew that visuals were important to keep their attention. So I scoured the Internet for stock photo companies, looking for just the right pictures that would make an impact. Since exaggeration is a significant method of gaining attention, I looked for images with hyperbolic content, making a point by going way beyond reality. One of the images  I found showed an older man peering from slightly behind a stack of eight or nine pill bottles. He looked concerned, befuddled, overwhelmed. “What could all these pills do? How can this poor man keep them straight?” I thought. “What a great satire on modern medicine! Inflate the situation to make a point.” We used that slide to discuss topics such as drug interactions, pill-taking difficulties, missing medication times, and so on.

       

      Scene 4

      Now that I’m pushing up against seventy, I have to admit that the photo of the man buried behind a mass of pill bottles is not actually satire, after all. It is a picture of reality. And rather than exaggeration, it is an understatement. Indeed, I have become that man in the photo. For I have not eight or nine, but twelve or thirteen bottles—of pills, capsules, gelcaps, tablets. I’ve got dopamine, stuff that pretends it’s dopamine, stuff that makes dopamine work stronger, stuff that makes dopamine last longer. And that’s just the Parky meds, unless you want to add the stool softener, needed because all the other meds and Parkinson’s itself constipate the heck out of many of us. (Do I recommend the stool softener? It works great. Instead of feeling as if  you’re passing chunks of concrete, it’s just feels like passing hardened asphalt rubble.)

      So what? Well, my pill regimen requires that I take various pills five times a day. So who has time to eat? And who has an appetite anyway? It’s almost a good weight loss program, except that I can’t chew the pills, depriving me of chewing satisfaction. At least the pills that would otherwise be horribly distasteful are coated now.

      In an effort to reduce the whole pill-taking nightmare, the pharmaceutical industry has begun to explore other routes of administration. Instead of (or in addition to) swallowing, you can now take your medicine by inhaling, injecting, pumping, or infusing it transdermally (that is, by skin patch).

      At any rate, we have come a long way from those days when the doctor’s assistant said, “Anesthetic, did you say? Sure. Here, drink some of this whisky and then bite down on this bullet. I’ll have your leg sawn off in no time. And if your stump doesn’t get infected or cause unendurable pain, and if you don’t bleed to death, you’ll be fine—eventually.”

      Maybe the meds we have are not so bad after all.

       

      “Christ gives me the strength to face anything.”  —Philippians 4:13 (CEV)

    • #18323
      Ruth MacKenzie
      Participant

      Hi Robert, thank you for the wonderfully descriptive words to describe the ‘progression’ of this most un-progressive disease! I imagine your sense of humour helps you cope.

      I coped with the changes my body threw at me for the first few years with ‘deParkinial’, it didn’t make the symptoms disappear , but I told myself the symptoms  were figments of my imagination, because, as you pointed out, you are still you, it’s just the body that has moving or shaking problems.

      Do you have a word for the times that occur only rarely; when the planets are aligned, the meds are working, you’ve been able to sleep for more than four hours and there is no immediate stress looming; that you have a glorious hour or two so immersed in something that – for a while – you  feel like you did – before PD?

       

    • #18322
      Robert
      Participant

      Robert

      What a word picture.  concrete ….asphalt rubble.

      I can identify.

      Good job.

      Robert C.

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