Here are my thoughts on choosing joy and gratitude when facing a currently incurable disease and how we should treat all people.

This isn’t a pity party column.

It’s a genuine way to highlight the syndrome. A progressive and degenerative one that is, in many ways, a brutal journey.

It’s also to share what I’ve learned about how to deal with tough times.

For me, the outward-facing symptoms aren’t the worst. The weird walk, effect on voice, tremors, slow movement, etc., aren’t pleasant, but they aren’t the worst things.

It’s the hidden ones. The symptoms no one sees that you wrestle with daily or periodically. From bladder and bowel issues, struggles with swallowing, fatigue, insomnia, severe apathy, and anxiety. All of these are unseen by people but are very, very real.

After an intense period of travel and relatively high demand, combined with grief and a virus, I feel done in.

My natural optimism is replaced by a deep apathy that can be so severe it’s as if you don’t exist. Totally numbing. I also get something that was previously alien to me;

Anxiety - a clinical symptom of PD due to the disruption to pathways in our brains.

You know it will pass, and this isn’t you but the disease. However, no matter how much you tell yourself this, it’s tough. Brutally tough.

I’ve learned that you can’t think or pray your way out of it. You have to make conscious choices.

Read on.

The ongoing depletion of dopamine neurons has a catastrophic effect on people with PD.

In my case, the very rare young onset variety typically comes with more dystonia (persistent cramp), depression, and dyskinesia (involuntary movements).

When I feel like this, it’s hard to smile. This is not just due to the face masking (rigid face muscles that make you look angry or moody) but also because nothing really feels good.

In fact, due to the lack of dopamine, you get very little reward hits due to the lack of the hormone that gives you them. So, even good things feel neutral.

So what do I do?

I have to make conscious choices to be joyful and to choose gratitude.

When you do this by disciplined choice, gradually, things change.

I also have to rest.

This condition doesn’t make life easy for family, work colleagues, and friends, either. I’m grateful for those who understand and give me extra grace in these times.  

I’ll never throw in the towel; that’s not my style. Sometimes, though, in order to replenish, I need to go dark.

If I go quiet or am slow to reply, now you know why. 

I’m not being rude or slack; I’m simply dealing with the fight of my life. Usually, it only takes a day or so to pull out of the nose dive.

Finally, here’s my advice to everyone, including me, when dealing with people.

Be kind. Give the benefit of the doubt. Believe the best. You don’t know what someone is going through.