Secrets, Fears, and Vulnerabilities with Parkinson's: Part 2

In late winter / early spring of 2018, after consecutive bouts of respiratory distress that brought on physicians’ concerns of aspiration pneumonia, I quietly reached a point of “no more new diagnosis” in my Parkinson’s life.

Nevertheless, Mr. Parkinson’s chose not to listen to my stubbornness. There’s a simple reason: He’s a scumbag.

Anyway, the thing about Mr. (or Ms.) Parkinson’s making moves is that he (or she) is very deliberate in how the game is played. Everything is done by design, and then BLAM! What once was nothing arrives in WWE style and it hits the fan. Because of that, there is always a degree of fear in me about what will come next.

As with Pink Floyd’s The Wall, there is a feeling that Mr. Parkinson’s is once again telling me that “One of My Turns” is coming on. “Don’t look so frightened, this is just a passing phase, one of my bad days,” he seems to be singing while trashing the premises.

Unfortunately, this isn’t Bob Geldof acting out. This is my life.

A fear unlike any other

In the beginning, when I was diagnosed with Parkinson’s, I didn’t know what it was. When I did find out what it was that night, I had my first bout of real, deep-down mortality fear. As someone with a lifetime of anxiety and the experience that it teaches, I have learned to try to differentiate between what is a real fear and what is my mind obsessing over an obstacle that I can just walk away from.

But this fear was something different.

Nevertheless, I coped with it the best I could. “I will not let you take me down!” I naively stated in my proudest warrior voice.

Lyme disease and long needles

Then came the Lyme disease diagnosis and the spinal tap that came with it. As with root canals and the dentist who didn’t use enough Novocain for my first one at age 17, I was in fear of the pain this would cause me.

Then, I took the needle and didn’t know it was in there until I was done with the procedure. That’s kind of the same thing I feel about root canals with enough Novocain, now. “Get me set up and ready to go. Drill away!” No more fear of anything, but the bills.

Pneumonia and my lungs

By the time pneumonia hit, I was unaware of how brutal an opponent pneumonia was until I went through the difficult breathing (at just under 90 percent O2 saturation, which is nothing compared to some even lower COPD levels). It shook me to the core that they were worried that I would get food in my lungs while eating. In this, the thing I needed to do to live, was the process that could very well kill me. Isn’t that some serious mortality fear?

Add to that the coffin-like CAT scan to detect it, and it felt like being shoved into a morgue waiting for my results on that return trip.

Navigating a world of phobias

What’s more, I learned there are a lot of things in life to fear… if I let them. I could fear walking around with a hearing aid due to my Parkinson’s (and loud rock music) induced hearing loss. Additionally, my fear of sleep apnea and asthma diagnoses could make me dread going back to be diagnosed for these things.

After the terrible experience I had with the mask coming off constantly in those early months of 2018, I saw my REM sleep behavior as a barrier to using the machine. I would fall asleep without a problem, but I would take the mask off in my sleep without knowing. The doctor I went to refused to believe this explanation (or so I believed), so I moved on from her.

However, I will add that stopping the device was more about the excuse to move on from what I feared: another diagnosis and another device/medication in my life.

Facing my fear and breathing easier

I confronted this fear again after bouts with bronchitis every allergy season. I couldn’t take that extreme 2-day stay(sick)cation, so I went to get tested for respiratory functioning. Immediately, the woman who was my PA asked to do sleep testing.

“Not right now,” I said, brushing it off to a nonplussed look.

A little while later, she asked again with arm-twist treatment and the definitive knowledge that her docs could do A, B, and C. I immediately agreed as I just love a person who can take charge of a situation and make magic happen. Really. She became A-OK in that instant. I've sung her praises to other doctors she works with, too.

In the end, that fear was for nothing as this sleep study encountered no sleep apnea. The other tests found some asthma, but nothing severe. I now have inhalers. As a result, I push on to the better days with a more relaxed breathing pattern.

I worry about losing myself

Still, there’s more things to be afraid of since I fear psychological tests to determine what I can’t do mentally. The initial and the final process of that was horrible, and I dread going back to it in the future.

As a person who spent a lifetime “geeking out” on knowledge and being creative, I fear the mistake that triggers the moment that the Body Snatchers invade and I’m no longer me. Even as a PD advocate who knows how good deep brain stimulation can be and how much safer it is, as evidenced by my neurologist’s description of this 4th Industrial Revolution technology being simple computer processes, I still worry about “what if.” Maybe I don’t worry as much as I did, but that’s only because I trust him.

But I still worry.

All the while, I think about the point that my brain messages hit the “bridge out” signs due to dopamine problems and then get rerouted for longer journeys (or “out of commission” commands). I know I’m slower and more lethargic, but my mind feels sharp… at least I think it does.

The Pasture looms

Nevertheless, I still fear the Pasture that I don’t want to get put out in when Parkinson’s makes its move and takes too much of my brain function. I have things to accomplish first, even if Parkinson’s doesn’t care. I feel the same about dystonia’s inconsistent visits to my right foot while it twists my left foot around, curling my toes as it does. The physical loss is coming, but I don’t know when it’s Parkinson’s move.

Right now doesn’t hurt, except my fingers as I type through the rust, but it’s there, and worse is coming. It wants my dreams and abilities. It makes me ask, “What happens first? The Great Gallery/Petroglyphs trip and/or the United Kingdom/Ireland return trip, or the Pasture?”

Don’t get me wrong. I don’t fear the imaginary timelines unless they feel real. And the longer my luck holds out, the more I question what I might be seeing and what I can’t hide from others, whether it’s really there or just their unfounded worries pushed off on me. That said, time moves and things happen. It's the nature of the beast I choose not to think about until I do.

Being brave together

Just like you, we, your Parkie writers have lots of secrets to share. We’re as vulnerable as anyone out there. It’s important to share our fears so you know that we’re real, and we’re down in it, too. It’s all about finding a way and sharing/learning strategies to be brave.

Read part one of this series where Dan talks about the secrets we share and the secrets we keep.