Simon Says...I’m doing okay!

“How are you doing?” is not a question that PWP particularly resonate with, if the questioner knows you’ve got the disease. The fact is that PD totally sucks, except if you’re lucky enough to find yourself asymptomatic for a spell. But even then, PD is neuro-degenerative, so there’s a looming future, which is impossible to call ‘okay’ or ‘great’.

Recently a family we know relocated to Australia. When the husband left LA, he had eleven full cases. I suddenly realized carrying eleven heavy suitcases is what PD is like. It’s an almost impossible load to maneuver and you’re stuck with it. Each case represents a symptom, and as your disease progresses, PD adds more bags to the load, and more load to various bags. It’s like a bad Dad joke you’re forced to laugh at again and again.

Saying “okay” or “great” when asked can either be a tiny white lie, because it means you don’t have to be a Debbie Downer with bad news about your condition, or it can be the truth that you actually feel ‘okay’. Even here there’s some parsing to be done. But it’s critical. If you’re able to compartmentalize your PD, rather than let it define you, you’re more likely to view the rest of your life as ‘okay’ even though you’re still lugging around eleven overstuffed suitcases. For some PWP those cases are just a big inconvenience. You have too much else going on in your life to worry about them. Family celebrations, travel, and filling up your social calendar.

The ‘okay’ described above is the Nirvana of ‘okays’. It’s not impossible to reach by any means. You just have to discipline your mind to release yourself from the grief and depression that can come with a PD diagnosis. One PWP I know pretty well has a great attitude. “I won’t let Parkinson’s stop me from doing what I want to do”. That’s even better than being just okay!

Compartmentalizing the black hole that is PD is not easy. It’s not a disease you get to forget you have for more than about thirty seconds at a time. Setting PD aside to improve your mood (to at least ‘okay’) can be a mentally herculean mountain to climb. You can’t do it alone. You need the support of those around you, as well as hobbies, work, friends and family, and being proactive about your own care, as well as being a team with your care partner.

A good diet and regular exercise can provide a solid base, But most important of all, mentally separating from your affliction is something you have to lead yourself. Your care team will be inspired. Succeeding in compartmentalizing can come naturally to those lucky enough to have thick psychological “armor”, so that every projectile bounces off your happy mental state with impressive predictability.

For many of us though compartmentalizing is a hefty challenge. To beat the gloom there may be pharmacological protocols to try, as well as exercise and eating right. But I know that I can’t give up.

© Simon Gornick 2025