My Father, Khader: Making Sense of His Decreased Appetite

I have this memory from about two years ago, before my father was officially diagnosed.

My mother was running late to work and was rushing out the door. But before she rushes out, she boils two eggs for my father and tries to feed them to him. The issue we were facing at the time was his appetite.

Why doesn't he want to eat?

Unbeknownst to us, a decrease in appetite or rather a decrease in the joy of eating is a non-motor symptom of Parkinson’s disease. We felt that my father was simply not eating enough and as a result, his blood sugar would drop and he would feel more tired and weaker and well, more irritable.

So, back to the memory, my mother is like pushing my dad to eat these two eggs, which are not soft boiled. And I am watching her as she’s like, “Eat, eat, eat!” and he is scarfing these eggs down and chokes them up. The eggs were all over the table and she feels awful. She cleans it up and leaves for work.

For me, the memory is quite funny. For others, it seems like she is angry. But what it really is, is she is concerned. She doesn’t understand why he is not eating. She doesn’t understand why he is weaker, why he is more tired, and why he refuses to take control of his weakness.

In her mind, at the time, she felt that the more he doesn’t eat, the more he won’t want to get out and exercise, and the more he’ll just wither into despair. So simple it was in her head, the logic of it all. All he had to do was eat some more eggs.

Where does Parkinson's begin and end?

It’s hard to understand where the Parkinson’s begins and where it ends. Was he really not hungry? Or was he not hungry because he is depressed? And was he depressed because of the chemical imbalance of Parkinson’s? The beastly nature of Parkinson’s is that it truly monopolizes his life. It’s very hard as the people who care for him to understand who he is now.

Where does the Parkinson’s end and where does he begin? If we are struggling to figure this out, I can’t begin to imagine what he must be feeling.

A heartbreaking explanation

When we did get the official diagnosis for my father’s Parkinson’s, we did as a family have a hard time of course. After so many years of being a heart patient and managing his diabetes, we felt, “How could he be any sicker?”

And we felt sadness. Sadness that my father’s final years wouldn’t be as relaxing as we hoped for them to be. The man had not had an easy life. But those were big picture concerns. We did, however, feel some relief. A complicated version of relief.

All the symptoms of Parkinson’s, motor and non-motor, were not just in our head. He wasn’t just weak or tired or angry. He wasn’t just not hungry. There was an explanation to it all, and from there we could somehow move forward in a way. Nothing was solved or even close to being solved. We weren’t going to bed feeling better in any way, but there was some sort of comfort. An explanation for it all.

Of course, at the time, we had no idea how long our journey ahead would be or what we would discover about just how deeply Parkinson’s takes over a person’s whole life.