Part 2: Is it Me or is it PD?

Almost every online list of PD symptoms mentions personality changes in Parkinson’s. Decreased extroversion, a distaste for social engagement, increased stubbornness, and increased impulsiveness are all good examples. Google “social engagement” with “Parkinson’s” and you’ll get a number of studies demonstrating the relationship between PD and reduced social engagement, sometimes due to motor difficulties but more often related to perceived personality changes. Google “Stubbornness” with “Parkinson’s.” You’ll find numerous caregiver complaints. Try “impulse disorders” with “Parkinson’s” and you’ll find lots of reports of impulsive behaviors.

I’ve seen some pretty obvious neurological personality changes (NPCs) in action—or rather inaction—when my mother gradually retreated into alcoholic dementia. So I know that NPC’s are a “thing.” She had been a social butterfly but now she turned down invitations, rejected activities that required her to leave her chair, and lost interest in everyone but herself and the next drink.

But I’ve also seen PD doctors and caregivers nod wisely as they conflate behavioral change with personality change and blame it all on PD. And I’ve wondered if some of the changes I’ve made over the last five to ten years, changes that I construe as “progress,” might be diagnosed negatively as PD-related personality changes by a provider or a caregiver.

What do I think of as “progress”? It’s simple: I had been a person who could always persuade herself to say yes to others’ needs, mostly through an over-developed sense of responsibility. Guilt was my driver. But a few years before my diagnosis, I demoted Guilt to the passenger seat and stopped doing (many) unrewarding activities. Over time and with care, I’ve begun to evaluate my “have-tos,” “musts,” and “shoulds,” asking myself which activities can be eliminated in favor of a more rewarding life. My true values include family, close friends, doing good work, reading, writing, learning, and cultivating healthy habits. Why wasn’t I doing more of this?

Gradually, I realized that I had to learn to say “no, thanks” to activities that wear me out and use me up, including in no particular order, meetings without agendas or action items, large dinner parties, events that require stressful commutes, and a special no to almost everything involving big groups and alcohol (more on that later). The advent of zoom during covid meant more opportunities to say no: I learned that more than about 3 hours a day on zoom was too much. That it was okay to turn my camera off sometimes. That I could space zoom meetings out to avoid an overload. Meanwhile, it’s “yes” to small, family gatherings and close friends; yes to work assignments where I know I can make a difference; yes to learning a foreign language (Italian!); yes to independent travel to interesting places; yes to writing workshops; yes to coaching writers; yes to close friends and family; yes to one-on-one chats.

Instead of wearing myself out with obligations, I’ve created time and space for what’s important to me. And since my diagnosis, I’ve become even more committed to this “time management” strategy. PD has helped me learn to care deeply about my own life and my own needs and wants.

But if you’re a caregiver—or a neurologist—you might read the latest research pubs or checklists from PD websites, then “diagnose” me as a PD patient who no longer has the social skills to manage complex interactions. Maybe you’ll say I fit the profile of those who take dopamine agonists and have become more self-centered as a result. (You might not notice that these changes started years before I started taking medications.) If I’ve disappointed you because I turned down that extra task at work, or don’t want to go out to dinner because I need to work out, you might complain about PD “stubbornness.” If I’m less sensitive to your needs, you may think I’ve lost some of my perceptive abilities. These are outsiders’ perspectives.

But what does it feel like from the inside?

From deep inside, these new behaviors feel absolutely right to me. What others see as increased introversion, stubbornness, selfishness, or a refusal to engage, I see as respect for my authentic self after a life of people-pleasing. I don’t drink anymore so all of those “going out” activities involving alcohol wear me out. I’ve always disliked small talk—that rules out many large social events. And spending a lot of money to go to a conference I’ve lost interest in? That might be the right choice for some but not for me. I go after what makes me happy and gives my life purpose.

My time of active living is limited, both by age and by PD. And I want to spend that time working, living, and learning, all activities associated, by the way, with slowing the progression of my disorder.

So let others say what they will, these “personality” changes are crucial to making the most of my life. My goal is to use my remaining time wisely, to avoid what saps my energy and instead seek what’s interesting, beautiful, and rewarding. I guess I’ve finally learned, in Mary Oliver’s words, to protect my “one wild and precious life.”

And if that’s a personality change, I’ll take it. Amor fati!