Hiker climbing a mountain representing various levels of pain associated with Parkinsons

Degrees of Parkinson's Pain

"What is pain like for you?" people often ask me in many different ways. For instance, someone will wonder, "Do your Parkinson’s tremors hurt?"

They're annoying, but not painful. Sometimes my left knuckles will hurt from the dystonia in my “claw,” but the tremors are just my "normal." I guess you could say that I shake because I have Parkinson’s. I shake right through my meds, though at a much-reduced rate. Thank you, Amantadine.

My personal pain

For me, the worst physical pains that I have experienced so far is the dystonia in my left foot, sciatica, and aspiration pneumonia.

Surprisingly, I was able to do a roughly four-mile hike to the top of McAfee Knob on the Appalachian Trail and feel less pain in my foot than I do sitting here typing. Even coming down from the 1,800 foot gain is less taxing on my foot when I’m wearing boots than the barefoot 90° pull down of my toes. The whole top of my foot, the toes especially will hurt from this. Go figure.

As for sciatica, this is a horrible shooting pain that leaves me unable to walk for a day or so, and unable to walk comfortably for a week at a time. The best way to describe it is a serious pain that goes from the lower back to the hips legs. Essentially, I feel like I’ve been body slammed from the top of a steel cage at Wrestlemania.

When I got pneumonia and couldn’t breathe right, as if something was sitting on my chest, well, that was really bad. It was equally bad with my Parkinson’s hot flashes rising to burning up levels alternating with being freezing cold. Two three-day stints in the hospital weren’t fun at all. Physically, nothing I’ve had with Parkinson’s hurts quite like that.

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Everything else pretty much just is. Non-blinking eyes, voice changes, bradykinesia, constipation, rigid arms, and the general "weird" gait I walk with doesn’t touch those feelings. That said, I’m early in the PD game (before falling and freezing), so I don’t know what the middle and later stages are like on a personal level.

Rating pain

To express pain, we have to establish levels of hurt. We have to set up a rubric of where things will score points. For instance, a root canal with minimal anesthesia is a ten.

I look at "one," not as the most perfect day ever (it can’t be that day without ice cream, by the way), but rather as feeling nothing. We’ll call it “clockwatching time.” Just like in seventh grade math class, sometimes life is drudgery. It’s what Dr. Seuss spoke of as the “Waiting Place,” when he talked about what happens when we’re not going places (in Oh! The Places You’ll Go).

My rigid knuckles are between a zero and a one. Sciatica at its worst, for me, was a six and a half. The way my back generally hurts is a two to three, unless I’m trying to create sympathy for a massage. Then it’s a seven (massage is "not a luxury")! Seriously, I would put my walking in sneakers that give my toes too much play at a five. My toes right now are a two and a half. Pneumonia was an eight before the breathing treatment. The burning up to freezing cold stuff was a nine.

Other types of pain

If we’re going to be able to learn to deal with pain, we have to understand pain is sometimes mental or emotional.

It’s obvious that a ten for pain should be like that moment in 1984 when Winston Smith faced all of his darkest fears. Like in that book, nothing in particular has to happen to us. We just have to worry it will. His rats never come. It’s just the fear that something is waiting on the other side of the door to get us.

Parkinson's can be like that for us. We can see it and feel that pain in our loved ones. To me, seeing their pain is the closest I've been to ten.

For many of us, the first time we process that Parkinson’s 1) will progress, 2) can’t be cured (yet), and 3) it comes with some pretty nasty fighting partners that can mess us up is our first real experience with pain. That dark moment stinks something rotten. What's toughest is that it's the first of many trials.

However, we readjust because we see other people’s strength and we recognize our own. That’s what our battle is all about. We know more unpredictable pain is coming, so we get tough.

We ignore the pain as long as we can because life is precious, even in our dark nights of the soul.

Mental suffering

Going back for my second CAT scan, when I knew what aspiration pneumonia was, I wondered if not being able to swallow food was going to be my killer. I couldn’t go without eating. If I wasn’t swallowing correctly, I was in danger. That was a low feeling, but like many people in tougher situations than me, I did what I needed to do at the time. I rode out the healing process and the results that I didn’t have swallowing issues. Nevertheless, every time I think about if this will come back, it’s a seven again. That time in the tunnel would have been a nine.

Sometimes, shaking the pain is just recognizing others have it worse and toughing it out. That's Dr. Seuss, too.

Nevertheless, sometimes we get trapped in a funk where a long string of sevens without end increases the pain. Like many of you, I've been there. It's horrible. That's why we have to celebrate each other's successes, no matter how big or small. We have to try to make tomorrow the best day ever (with ice cream at the end). There must be a hope for a cure or halt to the progress of this condition, but we can't be upset if it's not here yet. We have to live out loud, dream big, and smile wide, no matter what we can or can’t do. Living well is the best revenge. We can exercise, be around positive people, be inspired by quotes, or see beautiful scenery, but we need to be us as long as possible.

True pain

I know what a score of ten is, but I never experienced it. It’s the look on the face of someone who watches Parkinson’s end (a person who just watched her husband die, helpless to fight it). This moment of respect and solidarity is for her. I only wish someone could do something to stop any more fifty-three year marriages from ending that way.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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