“Annie, where are you?” I call out as I walk through the house. I find her sitting inside a huge shipping box stuffed with pillows. “What are you doing?!” I ask with amusement.
She answers me, “Nothing.” 

Nothing… that beguiling state of being that seems like it should be relaxing and peaceful, But for a person with Parkinson’s Disease (PD), “nothing” can be an unrelenting adversary. 

In warfare, “nothing” is like a scout going out to find the enemy for “apathy” to storm in and take over the entire operation.  Once Apathy, the commanding officer of operations, is in control, it’s very difficult to get rid of it. “Annie” is my apathy. She once ruled my life, but I put her in her place. Behind me. She’s a shadow and seldom bothers me now.

However, apathy is such a strong emotion. Most people have no idea how it really feels. This is the definition of “apathy”:  It is a state of indifference where an individual exhibits a lack of interest, enthusiasm, or concern about various aspects of life, including emotional, social, or physical activities. 

We’re not talking about a casual lack of indifference or interest like someone saying something like “Oh, I don’t care who wins the game. I’m not interested in sports.”  This is not apathy.
Apathy for a person with PD is not something that can easily be controlled with medication or therapy. We can confront it and work hard to keep it under control but it will sneak back into our brains, sabotaging any shred of executive functioning we have available.

PD brains do not bounce back or improve. In case you’ve forgotten… Parkinson’s is a neurodegenerative disease. DEGENERATIVE! That means we are literally losing our minds. Alzheimer’s and Dementia are finally more understood. It’s time for PD to be understood. It is NOT an old white man’s disease that only causes tremors, stooping, shuffling and slowness. Those symptoms can at least be treated with medications and therapies to make living with them more tolerable. They are physical, they are obvious, they can be seen and understood.

The scope of the mental decline from Parkinson’s is still a surprise to most people, with or without PD. World, please listen. People with PD have stories to tell about their emotional journeys. These stories bring emotions, like apathy, to the surface. We need you to know and understand what we are going through. Because if you know anyone with PD, even if it’s someone like a neighbor you only wave hello to on occasion, you are also touched by PD. Then you can become a messenger to others spreading the truth about PD’s mental health and emotional challenges.

So, at this moment I am not doing “nothing”. I am writing. My brain is engaged and functioning, for the moment. Apathy is not in control, at the moment. But it’s there. Always there. Waiting to take over. I will keep fighting it off as best as I can. It’s a daily battle. But for the rest of the day, I think I’ll sit in a box full of pillows. Just add dog and I’ll be set.