Category: Writing

As you read these posts, I am inviting you to walk along with me on this Parkinson’s journey. As with all journeys, it is a progression. Depending on what we encounter along the path, the progression is either uplifting and positive, like my discovery of biking, or degenerative and hinders our progress. Something is happening to me that is an example of the latter.

I’m sure everyone has seen a mime. The person that has their face painted white and is trapped inside an invisible box. I am becoming a mime against my will. 

The main tools people use to communicate with each other are speech, body language, hand gestures, facial expressions and writing. The progression of Parkinson’s disease is gradually taking these tools away from me. I am feeling more and more like I’m trapped inside an invisible box. I am constantly flailing about feeling for the walls. I have found the box is getting smaller.

I’m having a lot of trouble talking loud enough and forming my words clear enough so people can understand what I am trying to say.

My body increasingly is not paying any attention to what my brain is telling it to do, (body language).

My hands are also being uncooperative, ( hand gestures ).

A symptom of Parkinson’s is called facial masking. My face muscles also rebel and are losing the ability to show expression.

Writing is becoming more and more difficult, even with technology. If your hands won’t cooperate and voice recognition can’t understand what your are saying, what you become is a mime trapped in an invisible box. Slowly feeling the limits closing in, tediously trying to make some kind of connection with those you see outside the walls of your box.

Despite continually losing more of my ability to communicate, I still have things I want to say. Not just the moment by moment communicating that happens in life with Marcia, my kids and grandkids, family, friends and strangers, but I continue to have thoughts and ideas that may or may not be of some value. My desire is to still be able to express these things and continue to be a contributing member of the human race.

Thankfully, the invisible box travels with me. Also, because it’s invisible, I can see others and they can see me. I have noticed that some people seem hesitant to approach the box. Probably because they are not sure what my abilities are. My desire is that they make the effort to talk to me and I will do my best to talk and respond. I do think I’m a better listener than I was before the box.

Only God knows what lies ahead, but I’m ok with that. As long as my mind keeps coming up with thoughts, I will keep on trying to find ways to express them. I do know that God is not finished with me yet.

There are those moments in life that just stand out. Moments when something happens and you know immediately that you just experienced the hand of God. It is undeniable. You are living your normal life and in a flash, you realize that the Creator of the universe just acted on your behalf.

There have been many of these moments throughout my life. I’m sure there are many more moments that I’m not aware of.

There was the time when I was around 9 years old. I was rock climbing with some friends. There was a wall of rocks with a sheer face about 40 ft high. I started to climb. I was making good progress until I reached my hand up to grasp the top edge to pull myself up. But instead of feeling firm, flat stone, I felt loose sand and gravel. My grip did not hold and I found my body falling back with nothing to stop me hurtling down to the rocks below. As I started to fall back, I felt a hand on my back. This invisible hand pushed me back up so I could grab the top of the rock and pull myself to the top.

One Autumn, my dad, my brother and I were in northern Minnesota hunting partridge. We were walking along an old logging trail and came upon a small river. We decided to stop and rest. After a few minutes, my dad got up and wanted to continue the hunt. I was down by the waters edge and my brother was on top of the bank. As I was preparing to go, I heard a loud blast. Immediately, I felt hundreds of projectiles painfully peppering my face. I reached up with my hands to feel if I still had a face. Thankfully, I did. After I had some time to regain my composure, I realized what had just happened. My brother had mistakenly picked up his shotgun by the trigger. The gun was pointed straight at my head. It went off. Fortunately, between the gun barrel and my face was a small pile of dirt. When the gun fired, the shotgun pellets hit the pile of dirt sending the dirt up into my face. Only one pellet hit me and it just grazed my neck.

A number of years ago, I was running across a field and I came upon a 4 ft high chain link fence. It looked like an easy jump so I launched. I almost made it but the toe of my shoe caught the very top of the fence and sent me head first straight into the ground. The top of my head hit the dirt first followed by the full weight of my body. My head bent violently to the side and I heard a loud crack in my neck. When everything came to a stop, I laid there for a minute trying to evaluate my condition. I was concerned I had broken my neck. I started to slowly move, checking if anything hurt. Nothing did. I got up completely, moving my neck back and forth. Everything worked as normal.

One day, I was standing at a stoplight in downtown Orlando, waiting for it to turn so I could go. The little man came on telling me it was time to cross. But before I started, I heard a voice in my head say “WAIT.” Two seconds later, a small sports car flew past me with no intention of even slowing down. It missed my legs by about six inches. If I had stepped into the street, it would have hit me in the knees at 40 mph. Instead, I made it safely across.

I have talked a number of times about how much I love riding my 3 wheel bike. Just the other day I decided to go for a sunset ride. I went to my garage like I always do. I got on the bike like I always do. I started to back out of the garage, but unlike aways, as I backed down the driveway, I lost control. The bike turned sharply and flipped over. Instead of me riding the bike, the bike was now riding me. As I laid there with my face planted in the grass, a number of thoughts went through my mind. Am I hurt? Even though I felt minor pain in a few parts of my body, it seemed like I was ok. Did any of my neighbors witness this spectacle? No one was coming and I didn’t hear any sirens. Did I damage my bike? I couldn’t answer that question until I knew the answer to the next question. Could I get this bike of off me and could I get up by myself. I started to unravel myself from my bike and found I could stand. I took a body inventory and except for some small bruises, everything still worked. Then I was able to flip my bike over, no damage. I realized that instead of flipping and landing on the hard concrete of my driveway, my bike was directed to flip onto the thick soft St. Augustine grass of my front yard.

As I pushed my bike back into the garage, I found myself again feeling the awe of knowing that the Creator of the universe reaches down His hand in a moment and protects my steps and even directs my bike flips.

“He makes every bike flip a dance!”

Every person believes in something. We believe in truth. We believe certain things to be true.

An example of this is the truth that Jesus lived, was murdered and after 3 days, came back to life. There are many that will tell you it’s a lie. But even though it happened 2000 years ago and we didn’t actually see it happen, we believe it is something that is true. We believe it’s true because we know it in our hearts and spirits and see the evidence with our minds.

One of the most dangerous things a human can do is to be unwilling to abandon “truth”. To believe in something so much, that despite overwhelming evidence to the contrary, to still believe it is true.

There are some people that believe it’s true that other people in the world that have different color skin than they have are inferior to them. Their thoughts, words and actions reflect this truth. They even believe that by acting on this truth they are benefiting mankind. Adolf Hitler believed in a truth that there was a superior race of people and for the benefit of mankind, he was obligated to eliminate everyone that was different. Millions of people died because of what this one man believed was truth.

When the Apostle Paul was still named Saul, he believed it was true that the elimination of Christians was good and he acted on that “truth”. Fortunately, when Paul was confronted by true truth, he was willing to abandon his truth for real truth. And because he adandoned what he had believed was true for true truth, millions upon millions of people have found the true truth about Jesus.

So many of us hold on to truths because we don’t want to consider even the possibility that we are wrong or that something else is right. We hold on to “truth” we aquire through life experiences and hurts. We also aquire “truths” from other people like parents, teachers, friends and aquaintances. Once we accept a “truth” as true, we begin to base our lives, thoughts and actions on that truth, even though it may be a total lie.

All our lives are based on foundations built on what we believe is true. But, if the foundation is a lie, what is built on that foundation is also a lie. That’s why it’s so difficult to abandon what we believe is true because it involves tearing down whatever has been built on that foundation, building another foundation and starting again. It requires us to change our thoughts and actions. It requires us to abandon longheld beliefs and relationships and whole ways of life. That is so hard, but it is so worth it.

So many people believe that God either doesn’t exist or doesn’t care about us because of bad things that have happened. To them, the fact that there is no God is truth. To others, God is completely different than who He really is. Instead of a loving, caring God, He is a wrathful taskmaster that finds joy in his followers killing other people who refuse to follow His way.

So many of the “truths” we embrace or just believe without really thinking about them must be abandoned, such as….

People that are different than us are inferior….

Unborn babies are not really babies and therefore disposable….

God is responsible for all the bad things that happen to us and in the world, or He is just apathetic….

Marriage is disposable…..

All church denominations that are different than our own are wrong and harmful…

These are just a few of the truths we hold on to either actively or passively. To believe these things to be truth can be deadly.

So how do we evaluate our truths to make sure they are true truths and not a lie? Think about the things you believe are true. Really think about them. Ask yourself honestly, does my belief feel true in my heart and sound true in my mind. Ask God, even if you’re mad at Him. Let His Spirit talk to your spirit. Get a Bible and read the message He has written to you. All these things will guide you to true truth.

What will happen is a discovery of truth that isn’t true and needs to be abandoned and a joyful discovery of truth that is worthy to embrace. A truth we can build our lives on.

The fact that God truly loves us is the truest truth.

I’m jealous of the air. Moment by moment she desires it unceasingly. The air doesn’t care if she desires it or not. The air doesn’t care.

I’m jealous of the sun. Day by day she desires its warmth and light. The sun doesn’t care if she desires it or not. The sun doesn’t care.

I’m jealous of the rain. She misses it when its gone too long. The rain doesn’t care if she misses it or not. The rain doesn’t care.

I’m jealous of water. She regularly desires to have it touching her body. Every part of her body. Parts of her body that have always exclusively been saved for water and me. Water doesn’t care if it touches her or not. Water doesn’t care.

I’m jealous of a piece of glass. Glass that she touches many times a day. Glass that encourages and strengthens her relationship with others. The glass doesn’t care if she touches it or not. The glass doesn’t care.

The reason for the jealousy is not due to her. The reason is me. Something that is a part of me neither of us wanted or asked for. Parkinson’s disease.
All these things I’m jealous of are due to my inability to show her how much I need her and desire her. Relationship, especially marriage relationship requires subtle messages being communicated between the two people. Parkinson’s has robbed me of that ability. Without those subtle messages from me, she has no idea what my desires and wants are. Parkinson’s has also taken away most of my ability to physically express my ever-increasing love and desire for her. Limitations in my body due to rigidity and pain and my voice and communication challenges make it almost impossible to romance her the way she needs to be romanced by her husband.
Having Parkinson’s disease is hard, both for me and the one that promised herself to me forever.
I’m sure that there may be a small amount of jealousy when she sees another happily married couple that are not burdened with this hideous intruder invading their lives. But that’s ok. My hope is that she can still enjoy what we do have together and not mourn to much the things we have lost. And I hope she will always know of my love and desire for her, even as I lose the ability to show it.

Parkinson’s disease is referred to as a movement disorder. The term movement disorder to me means that the human body is unable to move normally. Due to damage of certain cells in the brain, the brain – body connection is broken. The brain continues to send signals to the body to move, but the path these signals must travel is compromised. This affects my life in a number of ways.

I am no longer able to sleep with my wife in our bed. Because of pain, I have found the only place I can get a good night sleep and not wake up in the morning in extreme pain is to sleep in a recliner. I first started to discover the various aspects of having a movement disorder from that chair.

When every movement you make is uncomfortable in some way, you find yourself making less and less movements. My recliner has become a kind of refuge. I have placed it in the middle of the room and I have tried to place all the things around me that I need to have close… IPad, phone, pills, water, remotes for my different devices, my pillows and blankets, paper towels and so on. Because there are so many things I need around me, and just so much space, I try to place everything carefully. But still, I continually find that something I need is just out of my reach. It’s frustrating. This morning I reached for a pillow that had fallen on the floor. I tried to reach over from my chair and get it, but it was just an inch too far away. No matter how much I stretched, I couldn’t reach it. I had to get up out of the chair, get it and then sit back down again. But, I had my pillow, my blanket and my iPad on my lap. So, it was necessary to lift these things off my lap, find a close place to set them so I could easily reach them when I returned. Painfully and slowly I pushed the lever to lift myself into a sitting position in my recliner. Painfully and slowly I tried to stand up, making it on my third attempt. I retrieved the pillow and reversed the painful process to return to my original position in my chair. I was now exhausted, hoping I hadn’t forgotten something.

I’m not lazy. When every movement you make meets with resistance and pain, you make the least movements possible.

It’s like I’m in prison.

Every prison inmate has a movement disorder. Most of the world is out of their reach. They are not able to go where they want to go and do what they want to do. Their movement disorder they brought on themselves by their actions. They are usually placed in prison because of something they did. I don’t believe my imprisonment is the result of something I have done. I am in prison none the less. The reason I am not able to do what I want to do and go where I want to go is not because of any crime that I have committed. I guess I’m locked up in this cell of Parkinson’s disease because of the crime that was committed by my first parents a long time ago in a garden.

Most prisoners in jail are confined away from the world that was once theirs. They are locked away out of sight. But my prison is right in the middle of my world. That means I can see all the things that are mine, but are now just out of reach…. picking up my grandson, running, walking normally, doing the work I want to do, having a sex life with my wife, riding a motorcycle, sleeping in my bed. These and innumerable other things that were just a reach away are now just out of reach. But, I’m not blaming anyone, except the creep that snuck into that garden and offered my first parents a lie.

Despite the fact that I will most likely remain in this prison, it is my intention to continue to live a life based on a decision I made when I was six years old. That decision was to accept a free gift from God.

Based on that decision, one day I will wake up and discover that not only can I reach that pillow, but I can move without pain. I will also realize that the bars of my prison are gone and I am free.

I have always known that this body and this mind were fragile. As with most people, my body gets sick. Some microscopic result of the fall of man invades my system from time to time and I get sick. Thankfully, God provided an additional provision for this. I guess I would call it an after the fall gift. Before the fall, Adam and Eve did not have an immune system. They didn’t need one. They were perfect and there were no germs. After the fall, their bodies needed something to fight off these invaders of the fall, so they were provided with body defenses to battle these new enemies. It’s been war ever since. These germs and bacteria attacking and adapting. Our defenses fighting back and adapting. Throughout history, our microscopic foes have tried many times to wipe us out. So far, our immune systems and the intelligence God has given to man to invent defenses have kept us from obliteration. I’m frankly surprised we are still here. If Satan had his way, we wouldn’t be.

When I was younger, despite getting sick, I did have a feeling of invincibility. That ended for me at the age of 50. That’s the year I believe I started to feel the presence of Parkinson’s disease. Any feeling of invincibility ended. My body and my mind were telling me something was wrong. More wrong than anything I had previously felt. Not knowing what was wrong was the worst part. It played havoc with my brain, body and my mind. I not only suffered from the onslaught of my physical body and brain being attacked by this unknown assailant, but my mind was fighting depression. Only after the adversary had been identified did a strange peace and resolve descend upon me. I was not imagining the things that were happening to me and the depression is a symptom of Parkinson’s.

So, roughly fifteen years ago, for some reason unknown to me, my brain started to cut back its production of dopamine. That’s the chemical the brain produces to aid and regulate movement. As the production decreases, my body moves slower. And not only my body and muscles, but some of my internal systems also. Digestion is one example. The little flap that insures what’s supposed to go to the stomach goes to the stomach, and what’s supposed to go to the lungs goes to the lungs, is another. It gets slow and I tend to choke.

They say that by the time a person starts to notice any Parkinson’s symptoms, about 80% of their dopamine producing brain cells are dead.

My journey with Parkinson’s disease started with symptoms from an unknown cause when I was 50, diagnosed when I was 54. But the journey hasn’t been too bad so far. Yes, I have had to stop working, I now drive very rarely. I’m slow, I’m tired all the time and get exhausted easily. Each day I become less dependent on what I have always been able to do and more dependent on my wife Marcia to stand in for me in life. But that’s ok. I could spend my time mourning the loss of me and feeling guilty for having to add all these things to Marcia’s plate. The bottom line though is that I didn’t ask for this. It just turned out to be my journey. And my sweet wife is just that, my sweet wife. She chose to walk this life with me. I would do the same for her.

My immune system can’t fight this. There are a lot of smart people working on a cure for Parkinson’s. If that proves to be too elusive, they are also working on finding a way to prevent it and tools to help people like me live our lives to the fullest.

As I continue to travel down this road that God did not want me to travel down, but was created by rebellion against God, I can see the white shores of my destination. It is more beautiful than words can describe. If I look real hard, I think I can see a crowd standing on the shore, waving me on.

And I do know that as my feet touch that sand and I go to greet all those I love, I will be running!

Living life in this material world, it is easy to think that all that is real can be experienced through our 5 senses. We think we know what we know by what we see, hear, smell, feel and taste. But there is so much more that is going on beyond the reach of our senses.

We have a body that senses things. We also have a mind that interprets what the body experiences. Another word that describes the mind is soul.

( soul   sōl/

noun

noun: soul; plural noun: souls

The spiritual or immaterial part of a human being, regarded as immortal.

a person’s moral or emotional nature or sense of identity.

“in the depths of her soul, she knew he would betray her.”

The soul is said to consist of our mind, will and emotions.)

We also are a spirit. This spirit is our true selves. When I think, dream, plan, show kindness, act unkind, pray, love, hate…… These are all acts of my spirit.

These three things put together make up who we are. It’s like the body is the vehicle we use to act and function in this world. The soul is the power that drives the body and steers it into action based on the information the 5 senses provide. Our spirit is the truest part of us that makes the body and soul do what they do in the context of what we are and know to be true. The soul and spirit are the only two parts of us that are immortal. The body wears out and when it does, we discard it like an old suit.

If we are awake, we are aware of other universe’s besides our own. These universes are inhabited by beings that are different than us. They have been around a lot longer than us. In these universes reside angels and demons. They have the ability to move between our universe and theirs. They have the ability to act and influence us and our universe. And they are at war. The war is for our spirits. Most of us are not aware that this war is taking place, even though it has been going on since the garden of Eden.

The war is between good and evil and the prize is us. The war was started by our choosing evil over good, Satan over God. Fortunately, God loves us so much that despite the fact that we betrayed Him, He is willing to fight to get us back.

The wonderful truth is, He has already won that war. Unfortunately, mankind and Satan don’t seem to realize it. Satan and his army continue to try to convince us that the war is still raging. He is still doing everything he can to convince us that he still has power. Any power he has is temporary and actually an illusion. He and his minions continue to fight to convince us to choose his universe over God. But just like our universe, Satan’s universe will end. It is already happening.

But the skirmishes continue.

One of my favorite books was written by Frank Peretti. Its title is, “This Present Darkness.” Early in the book there’s an incident where a small-town Pastor is in his small church praying for his people and his town. It’s night. Outside, something is trying to break into the church to get to him. But this something is being closely watched. This is a fictional glimpse into the war that is still being fought over us.

Here is the passage from the book;

———————

The night scene of the quiet street was a collage of stark blue moonlight and bottomless shadows. But one shadow did not stir with the wind as did the tree shadows, and neither did it stand still as did the building shadows. It crawled, quivered, moved along the street toward the church, while any light it crossed seemed to sink into its blackness, as if it were a breach torn in space. But this shadow had a shape, an animated, creature-like shape, and as it neared the church sounds could be heard: the scratching of claws along the ground, the faint rustling of breeze-blown, membranous wings wafting just above the creature’s shoulders.

It had arms and it had legs, but it seemed to move without them, crossing the street and mounting the front steps of the church. Its leering, bulbous eyes reflected the stark blue light of the full moon with their own jaundiced glow. The gnarled head protruded from hunched shoulders, and wisps of rancid red breath seethed in labored hisses through rows of jagged fangs.

It either laughed or it coughed—the wheezes puffing out from deep within its throat could have been either. From its crawling posture, it reared up on its legs and looked about the quiet neighborhood, the black, leathery jowls pulling back into a hideous death-mask grin. It moved toward the front door. The black hand passed through the door like a spear through liquid; the body hobbled forward and penetrated the door, but only halfway.

Suddenly, as if colliding with a speeding wall, the creature was knocked backward and into a raging tumble down the steps, the glowing red breath tracing a corkscrew trail through the air.

With an eerie cry of rage and indignation, it gathered itself up off the sidewalk and stared at the strange door that would not let it pass through. Then the membranes on its back began to billow, enfolding great bodies of air, and it flew with a roar headlong at the door, through the door, into the foyer—and into a cloud of white hot light.

The creature screamed and covered its eyes, then felt itself being grabbed by a huge, powerful vise of a hand. In an instant, it was hurling through space like a rag doll, outside again, forcefully ousted.

The wings hummed in a blur as it banked sharply in a flying turn and headed for the door again, red vapors chugging in dashes and streaks from its nostrils, its talons bared and poised for attack, a ghostly siren of a scream rising in its throat. Like an arrow through a target, like a bullet through a board, it streaked through the door— And instantly felt its insides tearing loose.

There was an explosion of suffocating vapor, one final scream, and the flailing of withering arms and legs. Then there was nothing at all except the ebbing stench of sulfur and the two strangers, suddenly inside the church.

The big blond man replaced a shining sword as the white light that surrounded him faded away.