My Father Has Parkinson's: Living with Regret & Guilt

From a young age, my father had health issues. His first heart attack was the year I was born. Then there was the second and third and fourth - on and on. Our life was riddled with random hospital stays and the ever lingering fear that his chest pain was a heart attack and not just a random muscle spasm.

This just means over the years we had developed, not a laissez-faire attitude to my father’s health, but that we just knew if it was serious, he would say something and we could go to the hospital and get it fixed. Parkinson’s isn’t quite like that though is it?

My father's first symptoms of Parkinson's

My father was officially diagnosed with Parkinson's in 2018 but we suspect he had PD for a few years by that point. I think back to memories from dinners where his hand would cramp in the middle of eating (Indians eat with their hands). My mother would hold his hand tightly and help him uncramp it, and then we would go back to eating like it was nothing.

Then, he started asking my mother to sign the checks for bills because he couldn’t write without his hand going stiff. He would ask her to talk on the phone to people instead of him because he couldn’t quite enunciate what he wanted to say. Naturally, my mother got frustrated and would ask “How come you can’t do it yourself?” She didn’t know it but she was asking the right question just for the wrong reasons.

Regret over not recognizing Parkinson's sooner

I look back and sometimes feel guilty and regret. I think about how my 15-year-old brain would get so frustrated or annoyed I would get that my dad was always looking for ways to depend on my mom. He worked hard but so did she. I never realized he was presenting symptoms of an illness that wasn’t going to take away his life in a matter of seconds like a heart attack might - but rather he was presenting symptoms of an illness that would take his life away slowly and over a long period of time. How could I have known? I was busy reading chick-lit in the school library.

But I do think about if I had stopped, or if my mom had stopped to think, what does this mean? Why is his hand cramping? Why is he unable to enunciate? Why does he sometimes just stare off into the distance? If we had taken a moment to really look and see, maybe we would’ve been able to manage his PD better. We might’ve been able to get ahead of it, get it treated earlier to manage the symptoms.

Treating Parkinson's earlier

In a research study published by the National Library of Medicine, it reads, “For patients below 65 years old, or above 65 years old but with preserved mental function and with no severe comorbidity, initial monotherapy with a dopamine agonist is advisable. This approach appears to delay the appearance and reduce the amount of late motor complications with subsequent levodopa treatment.” Basically, if treated or diagnosed earlier on, there is a delay of symptoms and how the disease progresses.¹

While this information does fill me with guilt, I do know on some level there is nothing we could truly have done. And also that we would probably be in the same boat we are in today. I could play the what-if game forever. And I could probably walk everyday with a little satchel of guilt hanging off my sleeve. But I have to remember I could never change the present. All I could have done is delayed it.