The Hidden Cost of Connection: What I’m Seeing After the World Parkinson Congress
By Richie Pikunis
As I’ve been watching TikTok videos, Facebook posts, and personal reflections from people who attended the World Parkinson Congress, I’ve noticed an overriding theme showing up again and again.
It isn’t research.
It isn’t new treatments.
It isn’t the latest scientific breakthrough.
It’s loneliness.
Or maybe more accurately, it’s what happens when loneliness suddenly disappears for a few days.
Video after video tells a similar story.
People talk about feeling understood.
Feeling seen.
Feeling like they didn’t have to explain themselves.
Feeling validated.
Feeling connected.
Some describe it as coming home.
Others describe it as finally finding their people.
And honestly, I get it.
Because understanding Parkinson’s and escaping loneliness are two very different things.
Most people living with Parkinson’s have people who care about them. They have spouses, children, friends, coworkers, doctors, and support networks.
Yet many still carry a level of isolation that’s hard to explain unless you’ve lived it.
Parkinson’s is weird that way.
You can be surrounded by people and still feel completely alone.
Not because people don’t care.
Because they can’t fully understand what it’s like to negotiate with your own body every day.
To wonder whether you’ll be “on” or “off.”
To calculate medication timing before every outing.
To worry about symptoms nobody else can see.
To spend years adapting to a brain that keeps changing the rules.
For a few days at the World Parkinson Congress, many people got a break from that.
They were surrounded by people who already understood.
No explanations.
No awkwardness.
No pretending.
Just recognition.
And I think something else happened, too.
Many people borrowed energy from tomorrow.
One of the things people don’t always understand about Parkinson’s is that the crash often doesn’t happen during the activity.
It happens afterwards.
You can get through a conference. A vacation. A family gathering. A wedding. A day in the city. Several days at an international congress.
You smile.
You socialise.
You reconnect.
You walk farther than usual.
You talk more than usual.
You stay awake longer than usual.
You absorb thousands of conversations, faces, emotions, presentations, decisions, sounds, lights, schedules, and expectations.
You do all the things.
Then the bill comes due.
For some people, it arrives that evening.
For others, it’s the next day.
Sometimes it lasts several days.
The body suddenly feels like someone pulled the plug out of the wall.
Movement gets harder.
Walking feels heavier.
Thinking slows down.
Words become harder to find.
Concentration disappears.
Motivation evaporates.
Everything feels more difficult.
And emotionally, the crash can be just as intense.
Some people become anxious.
Some become emotional.
Some become irritable.
Some just feel completely drained.
It’s not simply fatigue.
It’s neurological exhaustion.
The Parkinson’s brain has been working overtime.
What many healthy people don’t realise is that activities they perform automatically often require conscious effort for people with Parkinson’s.
Navigating airports.
Following conversations in noisy restaurants.
Walking through crowded convention centres.
Meeting new people.
Adjusting to changing schedules.
Managing medications.
Every one of those things costs energy.
A lot of energy.
Think of it like driving a car with a much smaller fuel tank than everyone else.
You can absolutely make the trip.
You can even look great doing it.
But when the tank gets low, it gets low fast.
I’ve often described it as borrowing energy from tomorrow.
Most of us do it occasionally.
The problem is that Parkinson’s collects the debt with interest.
And that’s part of what I think we’re seeing right now.
Not just people reflecting on what they learned.
People are recovering from what they experienced.
The emotional high of finally feeling understood.
The physical cost of squeezing every possible moment out of a rare opportunity.
The relief of belonging.
The exhaustion that follows.
Ironically, those two things may be connected.
Because when people spend years feeling isolated, and then suddenly find themselves surrounded by hundreds or thousands of people who genuinely understand their reality, they don’t want to miss a minute of it.
They stay up later.
Talk longer.
Push harder.
Attend one more session.
Have one more conversation.
Make one more memory.
And honestly?
I don’t blame them.
Sometimes, the connection is worth the crash.
Not because the crash is pleasant.
But because being understood is one of the most powerful medicines many of us ever receive.
No prescription required.
Just people who get it.
And judging from what I’ve been seeing online this week, a lot of people came home physically exhausted but emotionally refilled.
That’s a trade many of us would gladly make again.
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Reprinted with Richie’s permission. If you enjoy Richie’s writing, humour, commentary, and the occasionally unhinged neurological observations that come out of his brain, please join his Facebook page so you continue receiving his content directly.
The Parkinson’s Australia National Conference is coming from 16 to 18 May 2027 at the ICC in Sydney. It is an opportunity to get together with the Parkinson’s community to learn, share, network and leave empowered to take action against the condition. You can find out more information here and buy your tickets now.
FROM RICHIE:
To better manage my work, protect original content, and stop chasing posts across dozens of groups I don’t manage, I’m going to gradually stop uploading regularly into outside Facebook groups. Social media has become a weird game of reposts, screenshots, disappearing algorithms, and content getting detached from the actual creator. Honestly, it’s exhausting.
You can continue following my work directly on Facebook or join my blog at voiceunshaken.com where I’ll continue posting essays, commentary, humour, advocacy, and the kind of Parkinson’s reality people usually whisper about instead of saying out loud.
