Building Connections & Parkinson's: Overcoming Isolation
After a decade in Parkinson's advocacy, the most common hurdle reported by people with young-onset Parkinson's disease (YOPD) is not what you might think.
It happens to be isolation.1
People with Parkinson's (PwP) often report feeling lonely, abandoned, or mischaracterized around strangers and friends alike. I find this tragic and avoidable.
Below is a potential disclaimer to help alleviate this additional burden. If you've been searching for something to share with friends, family, co-workers, community members, partners, and acquaintances, this one's for you! Just change any identifying details and share!
A letter to share with others
Hi. My name is Heather.
I’m just like you, except I’m living with a movement disorder called young-onset Parkinson's disease (YOPD). You only need to know this if you intend to interact with me (virtually or in person).
This condition means my capabilities vary. Sometimes wildly.
Text, email, and messaging apps are increasingly difficult for someone who uses voice to text almost exclusively. I’m not as capable of communicating virtually as I am in person. If you cannot see my body language and my facial expressions and you cannot hear my voice, please avoid any “mindreading.” I can be weird, confusing, or even difficult in text formats. Please try not to make it mean something it doesn’t.
If we have met, and this is not obvious, then we may have interacted during a time when Parkinson's medications happen to be working. People with Parkinson’s generally end up on a heady cocktail of interesting meds to manage symptoms. Without them, I can lose the ability to do things. Like walk, or speak, or swallow.
Parkinson’s devastates your dopamine channels. Dopamine is a neurotransmitter that controls movement, and also things like pleasure, reward, and addiction. Healthier people have stable, predictable, reasonable dopamine production and uptake. We don’t. This means our moods and energy vary greatly, often from hour to hour. This is simply a medical fact. I ask you to please not take it personally. It really isn’t you; it’s me.
I’m the type who lives for meaningful connection with others, and when my condition prevents that it’s devastating for me. So if you’re my close friend and you judge then attack me for essentially having to navigate around symptoms I can’t totally control? That hurts. Have I offended or inconvenienced you? Please know I regret that. And please also direct any hostility toward the disease itself. That’s where it belongs. I still love and need my friends, especially when I'm struggling to navigate dynamic symptoms.
My disease is not my character. I’m still in here; I’m just a little more fragile and unpredictable. I’m open about it, and while it can admittedly be tedious to answer the same questions repeatedly, I greatly prefer your questions to random projections, assumptions, and judgments.
It's easy to learn more about Parkinson’s! Consider watching videos on YouTube, reading articles authored by PwP, or maybe join a webinar. It's a challenge living hour by hour in a planned world so frantically busy, and within a template that does not fit me (and in fairness, probably never did). I apologize if things get confusing as I am the one changing, but the terms of our relationship remain. The truth is I’m just tired...of explaining.
Can you imagine how scary it is to be under siege by your own brain? It’s disorienting.
I maintain a social media presence to help change the face of Parkinson’s. I’m interested in growth and sharing information. My primary intention is learning how to love and listen better even if that means public humiliation or attack by trolls, or for that matter people I trust. Constantly grieving the loss of my ability to function is only made more difficult when I feel anxious and alone.
We’re all interconnected, yet I sense pervasive loneliness among us. And who doesn't have limitations, dysfunctions, and disabilities? Sometimes they’re readily observable and sometimes they’re stealthy and confusing. We may all benefit from the reminder that there is a difference between capacity and willingness - as in Parkinson's is too much for some friends to even be near.
Compassion starts with ourselves, no matter what diagnosis we encounter. I like to imagine a well-informed and compassionate world where ableism and persecution don't exist. A PwP can dream!
Parkinson's is isolating and extremely difficult to navigate, even when support is fully engaged. Let's work together on communicating needs and expectations as clearly as possible. I hope this helps.
Do you or a loved one use smartphone apps to help with PD management?