The Fear of Forced Change

With Parkinson’s, one of the most important questions is how to balance needs and independence with fear and anxiety. This is not a simple equation in any way shape or form.

Just because the casino poker dealer handed us a neurological dumpster fire and a psychological nightmare card doesn’t mean we don’t still have dreams to obtain, much less needs.

Beyond food, clothing, and shelter, we need safety, love, self-esteem, and actualization. This didn’t vanish like our body’s ability to produce dopamine. Sure, we can fold, but throwing the cards down in this game means we’re out. There is no next time.

Yeah… that sucks. Instead, we can play the hand we're dealt

When doing it solo isn't working

I went into the post office today. While taping up my package, I was unable to get the packing tape unstuck from the roll. Instead of getting anxious and frustrated with this task, I kindly asked the guy at the register for help. Adding "my Parkinson’s shakes" was all the explanation I needed. He obliged, and I thanked him. No harm, no foul, and I’m still sitting at the poker table.

Then again, unsticking tape from a roll independently is not equivalent to no longer being able to take the stairs.

Acknowledging you need help

To not do something because someone else has to do it means acknowledging we can’t do it. I can still unstick tape most times. That time, I chose not to in order to avoid frustration and expedite the process.

For some things - clipping fingernails and cutting the corn off my cob (no I’m not 6 – this is just a preference of mine) - it’s easy to say goodbye to the responsibility.

Nobody judges the meaning of life on fingernail clipper use, even if manual dexterity is measured by scissors. As for a sharp knife, I don’t want to gouge my hand or lose a finger, so I acknowledge some loss of fine motor skills.

On that note, I’m also not allowed to use a chainsaw. So it goes.

Making different choices

Last month, my faithful puppy Sparky rode with me to sell my ice ax and crampons to a friend. Prior to Parkinson’s, this equipment led me to frozen waterfalls at Rickett’s Glen, Glen Onoko, and Ithaca.

In late 2021, these items were simply a temptation to bet on getting a natural beauty card, while knowing that the serious injury card was still in play. Risk or reward?

Selling them wasn’t an act of paranoid fear, but instead, it represented conscious understanding of putting myself and others in danger if I got injured.

Thinking about what I gave up, I have pictures from other waterfall trips. What would I see differently this time? Sure, the ice formations might be more intense, but the dangerous outcomes could also multiply.

In the past, I’ve pushed through the ice, crotch-deep, at Ludlowville, to see the magnificent hoarfrost. That was when I knew a thing or 2 about a thing or 2. In the past, I made choices that could have left me a popsicle.

My changing abilities

For me, I realized winter waterfalls might not get better than that. No matter what happened along the way, I always made it out at 97.1 degrees. I might not be so lucky next time.

With or without Parkinson’s, perspectives change. You can’t take away experience. I have the pictures to prove it. Besides, I can enjoy my friend’s adventures online. He and his friend are awesome photographers.

I’m cool with that. I'm choosing to ante up when abilities decline.

Life now

In the old days, I hiked into some really amazing places. Now, life is about my dynamic duo: Heather and Sparky. Taking "Sparks" on that trip was about letting him walk in the woods for the first time, just like my wife did.

We drove to the top of the mountain and he walked the trail for 50 feet before declaring he wasn’t going any further. Butt to the ground, staring up at me with those eyes.

In another time, my fear of losing long-distance hiking was a problem. I would have pouted if anything turned me around early. Now, I don’t need a 10-mile journey between the trees to make sense of life. I’ve got 10 pounds of energy zooming back and forth across the floor when "Daddy is home" instead.

New plans

Originally, adding "Barky" to our family was about enjoying the hand Parkinson’s dealt us. Instead, I got some tongue-wagging mop-top and love to share.

Having a Plan B doesn’t mean I’m tipping my hat and calling Parkinson’s my daddy. This means I’m choosing life’s possibilities instead of dreaming I’ll regain the impossibilities.