“Apathy,” Top Chef said, “is a symptom of Parkinson’s disease. Most of my Parkinson’s patients suffer from it. You’re not lazy, you’re apathetic, and you have to fight the apathy.”
Top Chef said this to my dad, my mother and me, at our first meeting, over a year ago.
Top Chef is dad’s neuropsychiatrist. That’s her nickname. She earned it when she said, “If we’re all going to get along you need to know I have to be the only cook in the kitchen. This means, no one changes meds, no other doctor orders tests, no one starts any sort of intervention without my permission.”
My mother and I immediately disobeyed her. We gave dad an extra Sinemet when he had episodes of freezing, an extra Clonazapem when his anxiety spiked.
When we came clean with Top Chef she shamed us in a tough love sort of way. Top Chef is aggressive and brilliant, meets with us for over an hour and pushes past what any other neurologist has ever done for dad. She’s also a little scary. My mother and I stopped our sous chef shenanigans.
Apathy is one of many non-motor symptoms of Parkinson’s disease. It is physiological (not psychological) and may originate in the basal ganglia of the brain, as dopamine decreases. 20%-40% of PD patients suffer from apathy. If there is cognitive dysfunction, the number is closer to 60%. The caregivers that I know report that each of their loved ones suffers from it, so I think these percentages are low.
The dictionary definitions of apathy don’t really capture what dad experiences. Merriam Webster defines it as a “lack of feeling or emotion”.
Dad does not lack emotion. His feelings appear muted because it is so much harder for him to physically express them. What he lacks is motivation.
The Parkinson’s Disease Foundation (http://www.pdf.org/apathy) has a much better definition:
“A person with apathy:
May feel that it takes extreme effort to get off the couch or out of bed to participate in daily activities.
Requires constant prompting to do anything.
Does not want to go anywhere.
Feels they “can’t be bothered.”
If left alone, without a goal, support or encouragement, may just sit on the couch or watch television.
Is not motivated to do things.”
Dad experiences each and every one of these, every single day, every minute, every second.
To learn more, I decided to go right to the man who has to fight this monster.
“Dad,” I said, “do you remember when Top Chef talked about apathy?”
“Yes,” he said, reclined in his cushy brown lift chair. He reaches for the chair’s remote and in an effort to rise up to my level, he pushes the down arrow instead. Slowly coming to terms with his error, he switches his thumb to the up button and rises to a seated position.
“Can you describe how it manifests in your life?”
“It puts me down for more than just the immediate time frame. It comes and goes.”
“Can you tell the difference between apathy and depression?”
“Yes, apathy passes through my system very quickly and depression stays for a long time.”
“How has it impacted you the most?”
“It’s like my brain is not transmitting strong signals when something changes. A lack of energy.”
“It takes you out of the playground. You don’t want to be, or have the facility to be, a part of the conversation. I just sit there in a group and don’t say anything. Because of the lack of energy, I can’t keep up with the conversation or the group dynamics.”
“What about effects on motivation?” I asked.
“It slows you down. It plays a part in not wanting to take walks, exercise, go to activities.”
“How does it impact people around you?”
“It puts a barrier up, it short circuits understanding on everyone’s part.”
“If it were a color,” I asked, “what color would it be?”
Yes, it is like a yellow ball, bouncing around inside his brain. Sometimes it’s small and hard like a marble, other times it is large and soft like a beach ball. Either way, it’s unpredictable, powerful and contagious. It not only knocks out dad’s will and desire, it knocks out ours as well. This yellow ball bounces into motivation, will and desire with crushing force.We all try to deflect it, push against it; but it is a Sisyphean effort.
“Dad, I found an Apathy Inventory test. Want to take it?”
“It’s short, just a few questions.”
“It will only take a minute.”
“I’ll help you, answer some of the questions for you.”
“I’m too full of apathy.”
And in that brief moment of shared laughter that follows, we beat back apathy.