The Brain Robbers of Parkinson’s Disease

A clever gang of thieves is hard at work inside my father’s brain. They may have snuck in years ago through doors left innocently unlocked. As in a fairy tale they slept a spell-like sleep, until a code was broken, or a signal given, and they awoke to plunder the riches of my father’s psyche.

They have set up camp in the substantia nigra, a dense and dark region of the midbrain. Like all great treasures, the ones these bandits seek lie hidden in the shadows. Dopaminergic neurons, these are the bounty of the substantia nigra. Precious, not for their rarity, but for their function, these nerve cells are dopamine’s production crew. And dopamine, as it passes on down the line, is a transmitter, a messenger of movement and mood – of all things good. This bears repeating, and capitalizing, and an exclamation point: “ALL THINGS GOOD!” It is responsible for the ease of gait and gesture, the instantaneous pairing of joy with a smile, and keeping anxiety and depression at bay.

So, of course, it is dopamine that these shrewd and cunning operatives are after. They have come prepared. Neurological gold diggers, they are armed with picks and hammers and crevice brushes. They chip and chip, slowly and methodically, every minute of every day for weeks and months and years and sometimes decades. They extricate and destroy one dopaminergic neuron after another. If they happen upon some norepinephrine neurons – regulators of heart rate, blood pressure and swallowing, to name a few – well, they take them too.

As the neurons go, so too goes the glint in my father’s eyes, his wry grin, the sureness of his stride, his spontaneous bear hugs and slaps on the back, his ability to find solutions for everything, his ability to drive a car or a boat, his ability to stand up without dizziness or fainting, his mental clarity, his sense of smell, his gastric and urinary motility, his wakefulness, his freedom, and frequently, his happiness.

Tonight, my dad sits on the edge of his bed holding a spoonful of applesauce. A pale yellow Sinemet is perched on top. Pills – and there are many – go down easier with applesauce.
His expression is flat and frozen, like much of the rest of him. As he stares down at the small mound of puréed fruit, he asks me, in stunning seriousness, “is that the toothpaste?” My heart bursts into tiny red beads that cascade down and scatter onto the floor next to his swollen and immobile feet.

Memories help me.

Lately, I have been reliving our family’s past summer vacations. Not the destination, the sparkling waters of the Chesapeake Bay, or the people I still know who knew me as an infant. It is the drive. Two days from Iowa to Maryland. Two days crammed with my brothers and sister into a dusty blue Ford station wagon. The seats fold down and we sometimes stretch out in the back. But more often, we are screaming and throwing things at each other, complaining of thirst and starvation, and pumping our arms wildly up and down whenever my dad drives past a tractor-trailer. When the driver responds by blasting his horn, we burst into paroxysms of laughter and pride.

Inevitably, a threshold of sound and physicality is breached, and my father, after carefully checking his side and rear view mirrors for the same semi-trailers whose drivers have obligingly honked their horns for us, slows slightly, turns the wheel sharply to the right and next thing we know the station wagon has skidded to a stop on the side of Interstate 80. And he is the one screaming. Screaming at us to shut up and sit down. Yelling that we are distracting him, that we are going to cause an accident and then where will we be? Certainly not at Dares Beach. He refuses to start driving again until we stop. Scared out of our wits, we settle down, and dad veers back onto the highway.

Today, my father said something about my dog being an owl. I didn’t get it at first and thought he was voicing a delusion. Then I realized he was comparing the sound of Willy’s bark to the hoot of a Great Horned Owl, and turning it into a joke in his characteristically obtuse way – in which it takes everyone a minute or two to get the comedy. The thieves have not mined all of my dad’s substantia nigra. Maybe they are on a break, playing poker, smoking cigars and telling exaggerated stories of their on-going heist. But, I know, they will be back at work soon, chipping away, locating and destroying.

Can’t my father just careen onto the side of the road, slam on the brakes and scream these brazen and insidious characters into submission? Oh, that he could. If only he could.

16 thoughts on “The Brain Robbers of Parkinson’s Disease

    1. I could not agree more! I will share this with my residents and medical students. This is one prospective they may not fully learn from textbooks 🙂

      Warm regards

      Rebecca Spiegel

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  1. This brought me to tears as my dear husband who is 55 years old has been battling Parkinsons for 19 years and is now in the advanced stages.

    Like you, my heart breaks, to watch him struggle every moment of every day, and to reflect and remember all that he has been and mourn a life we both thought we would have at this age.

    Reality sets in all too quickly, but it is I who lives in this horrible reality, as his mind is losing the battle. Some days good, some days bad, rarely a glimpse of the man who was larger than life. He is but a shadow of his former self.

    Thank you for sharing so eloguently your experience with your father. I look forward to reading more as it is helpful to share with those who face the same battle with Parkinsons.

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    1. Sandy, your response is very touching. So sorry that your husband’s PD started at such a young age. My father is also a “larger than life” man and bearing witness to his decline is gut wrenching at times. I am sure that my mother understands even more intimately than me, the depth of your loss. Yes, it is helpful to share.

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  2. Dana
    Your beautiful words tear at my heart and ache for what you are going through. How beautifully remembered your car journeys with dad at the helm and the master of his domain. I too wish that on his present life journey that he could once again scare those “demons” , the culprits in his brain, and control his destiny.
    He is so blessed to have you as his daughter…who loves and understands him and will always keep him close to her heart…he will always be the father you remember and the father you have today and always. May each day together bring peace of heart, glimpses of yesterday and hopes for tomorrow.

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  3. Dana, this is an amazing description and so generous of you to share, and no doubt somewhat cathartic. Your family is in my head and heart. Sending love your way. xo

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  4. Dana, this is such a moving description of your Dad’s battle with Parkinson’s. I am a friend of Steve, and Sarah’s mom. I love how you can see, in the story about the hooting owl, a glimpse of your Dad’s true “old” self! It’s also good, as a family, to keep telling the stories of the old days…the one’s your Dad will probably remember long after what happened yesterday! Prayers to all of you as you travel this journey together!

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  5. Dana, you tied the realities of today in with beautiful memories and humor. And all in all, you shared the love you have for your dad.

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      1. I remember waiting for you all to arrive at Dares Beach. What wonderful memories we will always cherish. This is quite a tribute to Ed and how we all love him and Dottie.

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  6. Dear Dana,
    I loved your letter! Some 35 years have gone since we left NSHS in Eldridge, IA. right? Remember the Advanced Biology class?
    You had what we call in Europe ‘style’ and you still have. I hope your dad is or has not been suffering too much. He is blessed with a daughter like you.
    Kind regards and we wish you and your family some nice christmasdays.
    Filip from Belgium & An.

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