The Hardest Part Can Be Starting: Parkinson’s and That First Step

You know you need to get up.

You want to get up.

You are perfectly capable of getting up.

But for some reason, you are still sitting there.

Or perhaps you’re standing at the bottom of the stairs.

You know where you’re going.

Yet beginning feels disproportionately difficult.

Maybe the washing needs putting away, you need to get dressed, make lunch, go outside or start getting ready for an appointment.

Once you’re doing it, you may be fine.

It is that first movement — that transition from not doing to doing — that can sometimes feel like the biggest hurdle.

For people living with Parkinson’s, this can be a very real part of everyday life.

And from the outside, it can be easily misunderstood.

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“Don’t Watch Me!” — Why Parkinson’s Can Make Things Harder When Someone Is Waiting

You know how to do it.

You have done it hundreds — perhaps thousands — of times before.

Then somebody stands there watching you.

And suddenly it becomes much harder.

You are trying to put your PIN into a card machine while people wait behind you.

Your fingers don’t seem to cooperate.

You are fastening a button while your partner stands ready to help.

The button suddenly feels impossible.

You are signing your name while somebody watches from the other side of the counter.

Your handwriting becomes worse.

You are trying to get out of a chair while everybody else is already standing.

Now your body seems even less willing to move.

For some people living with Parkinson’s, there can be an enormous difference between doing something in their own time and doing exactly the same thing while somebody is watching, waiting or urging them to hurry.

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Why Interruptions Can Be So Frustrating With Parkinson’s

“Where Was I?”

You’re halfway through making a cup of tea when somebody asks you a question.

You answer them.

Then you look back at the kitchen worktop.

And for a moment you think:

“What was I doing?”

Or perhaps you’re telling somebody a story.

They interrupt with a quick comment.

You respond.

Then comes the dreaded:

“I’ve completely forgotten what I was going to say.”

Everybody experiences this occasionally.

But for some people living with Parkinson’s, interruptions can be particularly disruptive.

It isn’t necessarily that the person has forgotten how to make tea, finish getting dressed or complete whatever task they were doing.

The difficulty can be getting back to the point where they were interrupted.

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Parkinson’s and Queues: Why Waiting in Line Can Be Harder Than It Looks

Standing in a queue sounds simple.

You wait.

The person in front moves.

You move forward.

You stop again.

Then you repeat the process until it’s your turn.

For many people, that happens without thought.

But Parkinson’s can turn that seemingly ordinary sequence into something surprisingly difficult.

A supermarket checkout.

Airport security.

A pharmacy.

A bank.

A café counter.

A ticket desk.

Even waiting to enter a busy event.

All of them can involve prolonged standing, repeated stopping and starting, limited space, people close behind you and the expectation that you will move immediately when the queue moves.

For somebody living with Parkinson’s, that combination can be challenging.

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Please Stop Talking About Dopamine Like It’s Just a Buzz

For people living with Parkinson’s, dopamine isn’t a wellness trend, a social-media hack or shorthand for having a good time. It is part of the biology behind something as fundamental as being able to move.

There are certain words that suddenly seem to appear everywhere.

At the moment, one of them is dopamine.

Scroll through social media and you’ll encounter phrases like:

  • “Get your dopamine hit.”
  • “This gives me a dopamine rush.”
  • “I’m doing a dopamine detox.”
  • “Stop chasing cheap dopamine.”
  • “Here’s how to reset your dopamine.”

The word has become shorthand for almost anything pleasurable, exciting or habit-forming.

A notification.

Chocolate.

Shopping.

Gaming.

Scrolling through social media.

Winning something.

Buying something.

Even somebody enjoying their morning coffee can apparently be described as “chasing dopamine”.

For many people, it’s harmless internet language.

But if Parkinson’s is part of your life, hearing dopamine discussed this way can sound very different.

Because dopamine isn’t simply the chemical responsible for making somebody feel good.

And for somebody with Parkinson’s, its loss has consequences considerably more serious than whether they can resist checking their phone.

Dopamine Isn’t Just the “Pleasure Chemical”

Popular explanations of neuroscience have a habit of turning complicated biology into catchy labels.

Serotonin becomes the “happiness chemical”.

Cortisol becomes the “stress hormone”.

Dopamine becomes the “pleasure chemical”.

The problem is that biology rarely fits neatly into a social-media caption.

Dopamine is a neurotransmitter — a chemical messenger used by the nervous system — with several important functions.

It is involved in motivation, learning and reward processing.

But it is also critically involved in movement.

That last part matters enormously when we’re talking about Parkinson’s.

What Dopamine Means in Parkinson’s

Deep within the brain is an area called the substantia nigra.

It contains neurons that produce dopamine and communicate with brain circuits involved in controlling movement.

In Parkinson’s, these dopamine-producing neurons progressively deteriorate.

As dopamine signalling in the relevant movement circuits becomes impaired, the brain finds it increasingly difficult to regulate movement normally.

That contributes to some of the characteristic movement problems associated with Parkinson’s.

  • Movements can become slower.
  • Muscles can become rigid.
  • Starting a movement can become difficult.
  • Automatic movements can change.
  • Walking can become more complicated.

This isn’t somebody failing to generate enough excitement.

It isn’t something that can be corrected by avoiding Instagram for the weekend.

It is neurodegenerative disease.

This Isn’t the Same as an Adrenaline Rush

This may be where some of the everyday language becomes particularly misleading.

We’re accustomed to talking about an adrenaline rush.

And that description makes intuitive sense.

Something frightening or exciting happens.

Your body’s fight-or-flight response activates.

Your heart races.

You feel alert.

The immediate event passes and that acute physiological response subsides.

So when people started talking about a “dopamine rush” or “dopamine hit”, dopamine began acquiring a similar cultural meaning.

A quick blast of something that feels good.

But dopamine’s biology is considerably more complicated.

There can indeed be rapid changes in dopamine signalling associated with learning, motivation and reward prediction.

There are also more sustained aspects of dopamine signalling, and different dopamine pathways perform different functions.

So the problem isn’t that dopamine has nothing whatsoever to do with rewarding experiences.

It does.

The problem is pretending that’s all dopamine is.
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