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Alexithymia, the Parkinson’s Get Out of Jail Free Card

Monday May 16, 2016

Parkinson’s disease, ever the over-achiever, brings with it a host of symptoms. You’d think that gait disorder, freezing, tremor, micrographia, dyskinesia, depression, dystonia, hallucinations, apathy, drooling, loss of ability to talk, REM sleep disturbance and constipation, just to name a few, would be enough. But the list just keeps growing. The latest addition: alexithymia.

When I came across this word in a recent post from Viartis, it took me at least a minute to even figure out how to pronounce it, let alone understand it. This, according to to the Merriam-Webster Medical Dictionary, is what alexithmia means: “inability to identify and express or describe one's feelings. People with alexithymia typically display a lack of imaginative thought, have difficulty distinguishing between emotions and bodily sensations, and engage in logical externally oriented thought.” Furthermore, adds MentalHelp.net “Those suffering from Alexithymia have difficulty recognizing and understanding the emotions of others.” Scientific American is more blunt but less precise, terming it “emotional blindness.”

Whatever it is, according to Viartis, 20-50% of people with PD suffer from it. It’s hard to think of an inability to feel, or express those feelings, as “suffering." But numbness is classified medically with pain, and it’s easy to see how emotional numbness can lead to emotional pain. An inability to imagine what another person is feeling is to walk blindfolded through a minefield. And in the case of a person with PD, the stress on the people on whom you depend is already heightened. Not being able to express what you are feeling cuts off the main avenue we have for successfully dealing with emotional fallout. So this is, beyond question, bad.

But deep in my wicked heart, a little voice whispers this isn’t a problem, it’s an opportunity. It’s like the realization that, a decade or more before a person is currently diagnosable through their motor symptoms, Parkinson’s Disease has been chipping away at them in subtle but slowly significant ways. Once aware of this, not only could you blame your current problems on PD, you could blame your past problems on Parkinson’s too! Didn’t get into Harvard? Blame PD. Weren’t captain of your high school basketball team? Parkinson’s fault. You have the emotional range of Star Trek’s Mr. Spock? It’s not you, it’s the disease. Obligation lifted, sickness is a universal Get-Out-of-Jail-Free card, right?

Blog Illo 28

I wish it were. But it’s not. This is just one more area, like speaking clearly and audibly, where those of us with Parkinson’s have to work harder than others to approximate normal. Just like we have to remind ourselves to speak up, we must remind ourselves that we need to spend extra effort to communicate our emotions, our love, our anxiety, our joy, our disappointment. Why work so hard at this? These are among the fundamentals of human exchange. Neglect them in yourself and they will become difficult to recognize and reciprocate in others. It just has to be done. It’s similar to the moment when I realized while working on physical therapy at home, that I could dial back a few reps- cheat- and nobody was watching, nothing to stop me. Except, oh, right. Parkinson’s is watching, the disease will know. And it will heartlessly exact retribution if you cheat. So you knuckle down and do the work. Because if you don’t, instead of getting out of jail free, you’ll end up rotting away in solitary confinement.

What’s that? You feel this is outrageous, unfair? That’s a good start.

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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