Apathy in Parkinson’s Disease

imageJust what does apathy mean? Some say that the opposite of hate isn’t love, but apathy – an attitude of not caring. Miriam Webster defines it as showing little or no feeling or emotion. Spiritless. There’s little or no interest or concern. You feel:

  • indifferent
  • complacent
  • disinterested
  • unconcerned
You are
  • lukewarm
  • aloof
  • cold
  • numb
  • unemootional
  • detached
  • unfeeling
  • insensitive
  • unattentive

Ever feel that way? I highlighted the word spiritless above, because I think that sums up the whole mess.

Apathy can be pretty pathetic and discouraging when you come across it in someone. Most people who are apathetic cause you to feel frustrated by their seemingly sense of detachment and unfeeling attitude toward life. However, in a person with Parkinson’s disease, often beknownest to them what is truly happening, they don’t want to feel this way. They don’t want to feel numb, lifeless, or spiritless.

Some tend to believe that apathy and depression are one of the same. According to the Journal of Neuropsychiatry, “Apathy is defined as diminished motivation not attributable to a decreased level of consciousness, cognitive impairment, or emotional distress. Depression involves considerable emotional distress, evidenced by tearfulness, sadness, anxiety, agitation, insomnia, anorexia, feelings of worthlessness and hopelessness, and recurrent thoughts of death.” In a study conducted several years ago, doctors concluded that in Parkinson’s disease, apathy is present, but depression is more consistent with the disease. So do we ignore the sometimes and shoot for the consistent? No. It all needs to be addressed. So where do you start?

I have struggled with both aspects of these two specific non-motor symptoms. Apathy has robbed me of time. Opportunities. So has depression. Whereas apathy has left me feeling unemotional and numb, depression has left me in darkness, despair and desperation. When they have coincided with one another, it has felt like a ticking time bomb in my head and spirit. It is a scarey place to be and it is real.

For me, part of the apathetic feeling I had came from feeling like I didn’t know what to do next. Feeling stuck in those ‘off’ moments. Keeping a list of things I want to accomplish or need to accomplish, no matter how simple or mundane it may seem, helps to bring things back into focus. Here are some practical suggestions for those moments when you feel bound in the land of apathy (and they help for depression mode, too):

  • Get up, take a shower, get dressed. Don’t think about how you ‘feel’. Don’t allow yourself to get distracted just be like a Nike commercial and Just Do It. Get going. And laying out your clothes the night before may sound childish, but who cares if it makes your life easier.
  • Get some exercise. Stretch. Walk. Go for a swim. If you can’t motivate yourself, ask someone to help you/keep you accountable. To pull you out of the house if they must, and drag you along until you’re going along because you now see just how much better you can feel.
  • Take your medications on time. This involves sorting them beforehand and having them ready to pop in your mouth. When you’re feeling apathetic or depressed, it is easy to just forget it becasuse unscrewing five child-proof prescription bottle caps four times a day isn’t something you’re going to feel like doing. You’ll pay for that apathetic thinking within the hour. 
  • When you have things you really shouldn’t put off, do the things you hate first. That will make accomplishing your goals easier.
  • Talk to a friend. Have someone pray with you and/or for you. Having another person to share life’s struggles makes the struggle bearable.
  • Talk to your doctor. There are treatments for apathy and depression for people with Parkinson’s disease who find themselves fighting to stay sane. This disease already takes enough from us. Don’t let it take your joy and happiness, too.

The Year is 2116 – A Story of Hope

I wrote this fictional story several  years back ano though I’d share it, just for fun.

Winter Wonderland
Winter Wonderland

2116… A hundred years from now…

Carl viber-dug down into the earth with his new iShovel in the backyard of his renovated 200 year-old family home. His grandfather was born there, his mother was raised there and he was able to salvage the remains from the old house and restore the place to the original beauty he once remembered as a young boy.

The tools used for the renovation and repairs were all state of the art and electric, powered by solar energy and wind. There were no gas powered tools anymore as petrol had ceased to exist in most every form. Windmills surfaced the face of the earth in plenty. Cars were all running on electricity and if one was fortunate enough to own one, you most likely were bringing home a paycheck in the upper six-figure category or more or you had somehow obtained a nice, secure, government job and could afford such a now-outdated luxury. The windmills may have improved the Go Green phenomenon, popular years ago when Carl was a boy, and the cars may have been made obsolete due to their unaffordability for the average worker, but the one thing that people like Carl cloud always count on? The high cost of living. It seemed no matter what improvements were made in Carl’s world, the cost of living for Carl and others like him never improved.

While in his determination to build a treehouse for his four year-old son, he hit something hard in the soil two feet down. Turning off his iShovel, he used his hands to unearth the rest of the find. With handles on both sides, he pulled it up, expecting a strain against his back. Surprisingly, he find no resistance from weight as he pulled upward. With one hand, he set it on the earth beside him and brushed the dirt from his hands onto his well-worn Levis.

Thankful for the i-Lectrode placed deep within his brain three years prior, when symptoms of Parkinson’s disease could no longer be denied, he was now able to maneuver and move without any pain, stiffness, or involuntary movement. He moved like a piece of fine-oiled machinery – one of his grandfather’s favorite sayings. With a small i-Battery embedded in his forearm, Carl had another fifteen years to look forward to without any worries – at least as far as his Parkinson’s disease mattered, anyhow. When the time did present itself, all he would have to do to replace the energy source that powered ‘his little wonder’ (as he called it) was to make an appointment with the Movement Disorder Specialist (that he saw once a year for good measure), have the technician in the lab remove the inserted tab from his forearm, and replace it with a new battery. It would then be reinserted, using up only ten minutes of his time, that is if he didn’t get into a deep conversation with the technician over the latest major league ballgames.

Carl unlatched the plastic box, knowing whoever put it there had done so within the last 100 to 150 years or so. The box was old enough, but not considered an antique like those which his grandmother had furnished the old house.

As Carl lifted the lid and found an empty pill bottle. Burnt orange in color with a white plastic lid. The kind he still used at present in 2116, only the lids now we’re designed differently, opening only through identification with a thumbprint. If the Recycle Control Center knew these containers hadn’t been recycled, Carl would be facing a hefty fine. The bottle in his hand had the old scan bars, so if he had been caught with them he would probably get off with a warning, being the bottles were of vintage era and made before mandatory recycling of almost every man-made item was put into practice.

Carl read the labels and realized the bottles had once belonged to his grandfather. The only grandfather he had known. The one with Parkinson’s disease. His eyes watered as thoughts came rushing back and suddenly he found himself reliving moments of his past.

As a young boy, Carl would walk to the pond with his Grandpa. He remembered him lovingly as his best friend and he loved the fact that his Grandpa never hurried about anything. He walked as slowly as Carl doddled. Grandpa always had time to stop and listen as Carl excitedly shared about the sighting of a butterfly and he would watch joyfully as his grandson ran to try and catch it. Carl didn’t know about Parkinson’s disease then. He didn’t know why his grandpa’s hands shook so bad. He didn’t know why it seemed he never smiled but always seemed happy. He didn’t know about Parkinson’s disease until his Grandpa tripped on the way home one day from the pond and fell, badly scratching his hands on the gravel road.

“Don’t tell your mother,” his grandfather had said, brushing the gravel that had pressed into his hands. “She’ll just make a fuss.”

‘Ah, yes,’ Carl thought. How right Grandpa was. When Grandpa started shaking beyond control, Carl’s Mom was adamant that his grandfather must be watched around the clock. Fortunately, Carl’s dad had spoken at length with Grandpa’s neurologist and had done his own research to give his wife an educated, short-course in the facts of Parkinson’s disease.

If Carl’s dad hadn’t spoken to him about his Grandpa’s condition before that day, there would have been no telling how Carl would have responded when his grandpa fell on that day. Carl remembered his dad saying a few days before it happened that grandpa was getting more unsteady and might start tripping more and actually falling, and “Grandpa may need to take your hand once in a while, just to help keep him balanced,” his dad had told him.

His dad had pegged it right. On the walk home after the fall, Carl held his grandfather’s hand the rest of the way back to the farm house. Looking back, Carl realized the he had needed to hold his grandfather’s hand, more than his grandfather probably needed his.

Grandpa proved to have some good, solid years left being 54, which gave both grandfather and grandson some great time for memories left to be shared. Carl remembered his grandpa taking him fly-fishing, teaching him to cast, stopping to take a dose of medicine while informing his grandson, “This’ll be easier for both of us if I’m not shaking like a belly dancer on a cold day.” As a boy of ten at the time, Carl wasn’t sure what a belly dancer was, but looking back, it now made him chuckle.
*****
Tears welled up in his eyes as he again looked in the box and found an envelope. He removed it and turning it over. Noticing the name “Buddy” written on the outside, he knew it was from his grandfather. Nobody else called him that and the name was written in small, squiggly cursive like his grandfather’s handwriting before he gave up writing because of the Parkinson’s disease.

A tear escaped down his cheek. Carl remembered how his grandpa loved to write.

‘Writing is a form of living,” his grandpa once said. “You live through the words you have chosen to pen.  Then you give them away to others in need of a new dream or renewed hope. And Carl,” he’d say, “if those words are chosen from the very depths of your heart, they have the power to change lives forever.”

It seemed like just yesterday when 12-year old Carl sat beside his grandfather’s chair, recording his grandfather’s words and freely offering suggestions while the two of them collaborated on a children’s book about a little boy without a dog. He thought about how he and his grandfather would laugh at the predicaments his grandfather’s characters would get into. Grandpa always did think out of the box, Carl mused as a smile crept across his lips.

He unfolded the paper inside the envelope. The paper was covered with small, scribbly writing, just like the front of the envelope. Writing that was barely legible.

Carl wondered how his grandpa knew he’d be sitting here, having unearthed this find – this wonderful surprise – and then he remembered one fall day at the pond, sitting on the dock, the water tickling his teenage toes as the two of them watched the sunset. A bullfrog croaked as the two generations watched a pair of Mergansers skid into home upon the water, scaring a red-winged crow out of the cattails, sending him fluttering off toward the east.

His grandfather looked out at the lake and smiled. It wasn’t often Carl saw his grandfather smile. ‘Not because I don’t want to,’ his grandpa once said, ‘but because of this little monster inside that took my smile from me. I’ve still got the joy the good Lord has given me though. Little Monster can’t take that.’ Now Carl knew first hand what his grandfather had meant. Carl scooted closer to his grandpa and put his arm up on his grandfather’s shoulder. A tear ran down his grandpa’s cheek.

The two stayed and watched a fish jump in the remaining sunlight of the day and then put their shoes and socks back on. As they walked back home to the farmhouse, they were both enraptured over the discussion about the treehouse they had always talked about building together – grandson and grandfather. Carl, almost ready to start high school and too old to really enjoy a treehouse , knew he was entertaining the ongoing discussion more for his grandfather’s sake at that moment than his own.
*****
Carl shifted his thoughts back to the paper in his hands, looked down and began to read.

Dear Buddy,

I am hoping by the time you find this letter you will still be able to decipher my chicken scratch writing.

We had some great times, didn’t we? Fishing, laughing, catching dragonflies, watching the sunrise as we camped by the pond. Watching it set when I got older and your mother insisted I no longer sleep outside. I suppose her fussing was warranted, but I sure didn’t care for it much. I knew your grandmother instilled too much fear about life in that girl. I suppose that is why I had so much fun with you. You had such a zest for life and as you read this, I hope it is still there, only stronger.

I know it is (or was) hard for you to watch me weaken. I do not know what will happen toward the end of my life or what I will be capable/incapable of. (I just hope I don’t lose my sanity and take on a sailor’s tongue or I can kiss your mother’s care for me good-bye and say hello to a nursing home with an ornery caregiver to look after me.) If I am incoherent, can’t speak, don’t remember your name, drool all over myself, or all of the above, I just want you to know now – I wouldn’t have traded one day spent with you for any other day of my life.

How often I have wished you could have known your grandmother and she could have known you. You two would have been an inseparable pair, for certain. I’m certain your mother has thought at times that I was a bad influence on you, but she always gets over it and is usually able to laugh along with us (and sometimes at us). Thankfully, your dad is good for your mom and good to her. He is a great son in-law (he is the one who is burying this box for me) and he and your mother have sacrificed a lot to let me live with you all.

‘Til my dying day I will pray with all my strength that this disease doesn’t take it’s tole upon you, Buddy. I would not ever wish it on anyone. Not even my worst enemy (and I include Mr. McCormick in that statement for earning you an unwarranted spanking from your dad. I don’t know that I’ll ever forgive that nasty guttersnipe (don’t tell your mother I said that) for accusing you instead of his own son for that mess over his smashed up car.

Anyhow, I’m gettin’ off track. I pray for you Buddy that they will have found a cure for this wretched disease before long. I was diagnosed at the age of 44. I can’t imagine being diagnosed at 26 like you were, son. They’re making some pretty good strides now, which I hope says something about the future. I know that you get concerned about me now and I can’t imagine the concern you’ll take on over me in the next few years. Probably much like the one I took on with my Diana, your grandmother, as I watched her die of that wicked cancer. A lady to the end. I don’t expect to be like that but then, I’m not a lady in any shape or form.

I watch you and I get angry. I’ve seen the tremor. I know what’s going on inside you. We both know, even if we don’t speak about it. So you understand my fervency to pray for you and a cure for this disease. Cherish each moment, Buddy. You won’t get it back. Never fear failure. Never lose your dreams. Love unconditionally. Forgive easily. Thank God for each new day. Never forget who you are or what you were made for.

You are a good man, Buddy. I was lucky – no, blessed – to have you as my grandson. More so, to have you as a friend. I know that you worry about the shaking and wobbling you’ve seen me do more of lately. I know you hurt for me when you see me in pain. But instead, I want you to remember me laughing. Playing ball and Hide and Seek with you. Catching that salmon out on the river. Camping at the pond. Remember the good times, Buddy, most of all. And don’t forget I love you more than your mother’s chocolate chip cookies and more than…

Grandpa

Carl wiped another tear with the back of his hand. He thought of all the phrases his grandfather would add to those words. I love you more than a frog at a princess convention. I love you more than a fish loves water. I love you more than superman loves his cape. And on and on they would go.

As Carl folded up the paper, he wiped the tears from his eyes and glanced back into the box to find a fishing fly. The one Carl caught the prized salmon with. The same one his grandfather had tied.

Carl heard the sound of his four year-old son in the distance and turned to look. He stood as he watched his son run toward him yelling, “Daddy!” as his wife followed behind. Carl put the letter and fly in his pocket and started walking toward his family. Scooping up his son into his arms, Carl lifted him up onto his shoulders as his wife stepped up to him, greeting him with a kiss.

“What do you say we make some sandwiches and go down to the pond and watch the sun set?” Carl suggested.

His little family chimed in with approval. “But what about the treehouse, daddy?” his son asked.

With watery eyes Carl answered as he started walking to the house. “I finished digging the holes for the posts while you had your nap, so first thing in the morning we’ll start building. You can be my assistant and help me mix the cement for the posts. How does that sound?” and holding his son against his chest with one hand and the other around his wife’s shoulders, Carl smiled and thanked God his Grandfather’s prayers had been answered and he would be spending a long, healthy life fishing with his boy and watching sunsets with his wife.

Where Does Your Strength Come From?

imageGrieving can and often does involve suffering, sorrow, sadness, hurt, depression, a feeling of affliction, and more. Grief is most commonly related to and thereby put into a category of death and dying.  However, grief covers so much more than our expression over the loss of a loved one.  

I was reading a verse from Nehemiah 8:10 which says, Do not grieve, for the joy of the Lord is your strength. Grieving can be an every day part of life for someone with a chronic illness like Parkinsons disease.  The first occasion to experience grief is upon diagnosis.  You realize that from that moment on, nothing will ever be the same.  There was no physical death, but eventually you realize that life from that day forward will be looked upon differently.  Some days will be looked upon with grief in the form of sadness and sorrow while others will be met with smiles and laughter.  Our path will not have necessarily changed, but we will face it with different emotions.

People who live with a chronic illness can be easily upset with life if they feel theyve been dealt a hand they dont deserve or refuse to accept.  This is a form of grieving in the way of anger and of asking why.  Why me? Why this? Why now? (As pondered in the justified mind of a Young/Early Onset Parkinsons patient.)  The whys of life can leave a person grief-stricken, as they can be hard to make much sense out of and/or hard to understand, if not impossible.  This can often lead to a deep sadness or depression and weve learned that depression is one part of the whole picture that patients often have to deal with, (It is wise to seek treatment if you are in this stage of grief.)  You may be waiting for a good day to come and, if youre fighting depression along with all the other challenges PD has to offer, that good day may not come.  

 

Affliction comes in several different ways through Parkinsons disease.  Pain, tremors, lack of balance, difficulty swallowing – the list goes on and on.  Each day we encounter different tests’ this disease seems to constantly give.  Will you lost your balance and actually fall this time? Will the tremors cause you to withdraw from the social activity you scheduled for the day?  Will the pain rob you of doing what you love?  Will going out to lunch embarrass you should you begin one your choking spells? The list of afflictions doesn’t end there.  We can feel slightly pricked or punched hard in the gut, depending on the severity of the test.  Its a state of misery that leaves you feeling helpless, sometimes hopeless and hopeless is such a dark place to be.  

 

There is hope.  I started this out with a verse that I had read today.  Do not grieve, for the joy of the Lord is your strength.’  Its not always easy to not settle in with grief as our companion.  Life as we once knew it has changed and some days have been replaced with deep sorrow over what we have lost or may lose.  Anticipation has been replaced with anxiousness and fear.  Fear of the what ifs.  Borrowing trouble from tomorrow.  Thats what the’what-ifs’ are made of. Tomorrow’s un-guaranteed trouble.

 

Instead of what-iffing ourselves into depression and sorrow, let’s learn to allow the joy that comes from the Lord to be our strength. Let’s replace sadness with hope, sorrow with thanksgiving, grief in its entirety with trust. His joy will build us up through this trial of life called Parkinson’s disease and keep us from falling into the abyss.  And joy is so much better, don’t you think?

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