101 | Managing your teaspoons

Counting Your Spoons: Managing energy when you have Young Onset Parkinson’s

If you’ve been living with Parkinson’s for any length of time, you already know that fatigue is a whole different beast from just feeling tired. Fatigue is the most common non-motor symptom reported by people with Parkinson’s and significantly impacts someone, which may lead to early retirement, reduced work hours, financial distress, loneliness and poorer quality of life.

It doesn’t always hit after a big day. Sometimes it turns up without warning on a perfectly ordinary Tuesday morning. And unlike the kind of tiredness that a good sleep fixes, Parkinson’s fatigue can feel like it’s baked into your day before it even begins. And it’s hard to explain to people who don’t experience it. That’s where spoon theory comes in. 

What is spoon theory?

Spoon theory was created in 2003 by Christine Miserandino, an American writer living with lupus. She was trying to explain to a close friend, in real time, over coffee, what it actually felt like to live with a chronic illness. She grabbed a handful of spoons from the table and handed them to her friend. Each spoon, she explained, represented a unit of energy. Now imagine starting every day with only a limited number of them.

The friend had to make choices, getting out of bed cost a spoon, having a shower cost another, getting dressed cost one more. By the time breakfast was done, several spoons were already gone. Unlike someone without a chronic condition, once you run out, that’s it. You can borrow from tomorrow’s spoons, but you’ll pay for it.

The idea spread rapidly through chronic illness communities and has since been used in scientific and health articles. For people living with chronic conditions like young onset Parkinson’s or MS, it resonates because it explains something that medical language often misses: the invisible, daily costs of living with a body that doesn’t always cooperate.

People who use spoon theory to describe their lives often call themselves ‘spoonies.’ It’s become a shared language, in support groups, online forums, and even in conversations with clinicians, for talking about energy limits without having to justify or explain from scratch every time.

Why fatigue in Parkinson’s is different

Fatigue is one of the most common non-motor symptoms of Parkinson’s, and one of the least talked about. Research describes it as a ‘highly prevalent, complex, and multidimensional symptom, encompassing cognitive, emotional, and physical components, that often appears early in the disease course and worsens over time’.

Studies consistently show that between 36% and 66% of people with Parkinson’s experience significant fatigue, with some research suggesting rates as high as 81% across progression. In one large multi-centre study, fatigue affected 65.9% of participants and was among the most frequent complaints reported. And around one in three people Parkinson’s report fatigue as their most disabling symptom, even over and above motor symptoms like tremor or rigidity.

What makes Parkinson’s fatigue particularly tricky is that it doesn’t always track with how much you’ve done. It’s driven by changes in dopaminergic and other neurological pathways, not just physical activity. It can overlap with, but is distinct from sleepiness, depression, and apathy. And it can fluctuate significantly day to day, or even hour to hour, in ways that are hard to know.

For people with young onset Parkinson’s (YOP), diagnosed under the age of 50, this layer of complexity is especially significant. You may be managing a career, raising children, and maintaining social and family commitments that people diagnosed later in life may have already scaled back. 

What does counting spoons actually look like?

The spoon theory framework is most useful when you use it as a practical tool. Here’s how…

Step 1: Know your baseline

Your spoon count isn’t fixed. It changes based on sleep quality, medication timing, stress, pain levels, hydration, exercise and even the weather. Start by paying attention to the days when you feel you have more to work with versus the days when you’re already running low before 9am. Some people find it helpful to rate their energy as soon as they wake up, before they’ve done anything, just a number out of ten. 

Step 2: Assign a rough cost to common tasks

Not everything costs the same number of spoons. A quick email might cost half a spoon. An hour-long work meeting with lots of concentration might cost three or four. Cooking a full meal from scratch might cost two, but cooking while you’re also fielding questions from kids might cost four. The costs change depending on your symptoms on a given day and are different for each person.

Common daily task	Approximate spoon cost
Getting up and showering	1–2 spoons
Getting dressed (buttons, laces)	1–2 spoons
Preparing and eating breakfast	1 spoon
A 30-minute commute	1–2 spoons
A focused work task (1 hour)	2–3 spoons
A phone call with someone new	1–2 spoons
Grocery shopping	2–3 spoons
Cooking dinner	1–3 spoons
Social event (2 hours)	2–4 spoons
Exercise (moderate, 30 min)	1–3 spoons

Note: These are rough guides only. Your spoon costs will vary according to your symptoms. The point is to build awareness of where your energy goes and get more in tune with your spoons.

Step 3: Plan before you spend

Once you have a sense of your spoon count for the day, you can plan. This doesn’t mean doing less, it means doing things strategically. A few questions worth asking:

• • What absolutely needs to happen today, and what could shift to tomorrow?
  • Are there tasks I can simplify or batch together to reduce the total cost?
  • Have I built in rest, actual rest, not just stopping, between the heavy-cost tasks?
  • What are the consequences if I borrow from tomorrow’s spoons?
  • Is there anyone I can ask for help?

Step 4: Protect the spoons you have

Energy conservation isn’t about giving up. It’s about protecting your capacity to do the things that matter most. Sometimes that means saying no to something small, so you have enough left for something important. Sometimes it means sitting down while you cook or shower; or doing what requires more thinking work in the morning if that’s when you’re ‘on’ (medication is working best).

Practical energy management strategies

Research in occupational therapy has identified a core set of strategies that help people with chronic conditions manage fatigue. Here’s how they apply to daily life with Parkinson’s.

• Pace yourself & mean it: Pacing is the discipline of matching your activity level to your energy reserves over time, rather than pushing hard and crashing.
  • In practice, this often means stopping before you feel you need to. If you wait until you’re exhausted to rest, you’ve already overdrawn on your spoons.
  • Try the ‘three task’ rule for days when energy is low: identify the three things that genuinely need doing, do those, and consider everything else a bonus. On better days, you can do more, but having your ‘three-tasks’ rule protects you on the harder days.
• Build real rest into your day: There’s a difference between rest and distraction. Scrolling on your phone after a tiring task isn’t rest.
  • Rest means letting your brain and body actually recover, which might look like lying down, doing a short breathing exercise, or sitting quietly for ten to twenty minutes.
  • Research consistently shows that poor sleep worsens fatigue the following day for people with Parkinson’s, so protecting your rest, including your sleep overnight, is one of the highest-value things you can do.
• Simplify & modify tasks: This is where occupational therapy thinking is really useful. Ask yourself, is there a way to do this that costs fewer spoons?
  • Sit down to chop vegetables instead of standing at the bench or buy pre-chopped veg
  • Use a shower chair when showering, this can save a teaspoon
  • Lay out your clothes the night before so morning decisions are already made
  • Use a slow cooker or batch cooking/freezing meals to reduce daily meal preparation
  • Move frequently used items so you’re not constantly reaching or bending
  • Use voice-to-text instead of typing for longer messages.
• Manage cognitive load: Mental effort costs spoons, too. Concentration, decision-making, managing social interactions, and processing complex information all draw on the same reserves as physical activities. On high-demand cognitive days, protect physical spoons and give your brain a break.
  • Write things down so your brain doesn’t have to hold them
  • Use a whiteboard or phone notes for the day’s priorities
  • Reduce background noise and visual clutter when you need to focus
  • Label drawers and cupboards so you don’t have to think about where things are
  • Schedule important conversations for when your medication is working best.
• Plan around your medication timing: If you’re taking levodopa or other Parkinson’s medications, you’ll likely be aware that energy and motor function fluctuate across your ‘on’ and ‘off’ periods.
  • Where possible, schedule higher-demand tasks, including both physical and thinking/cognitive activities, during your ‘on’ windows.
  • Use ‘off’ periods for lower-demand activities, or to get some genuine rest.
• Talk about it: One of the most energy-draining things many people with chronic illness do is hiding their fatigue. Trying to appear fine when you’re not, keeping up appearances, or not asking for help all cost spoons. Spoon theory gives you a low-pressure way to tell people how you’re going. ‘I’m on about three spoons today’ can say in five words what would otherwise take an uncomfortable conversation.

This works with partners, family members, close friends, and colleagues you trust. It’s not about oversharing, it’s about communicating your daily capacity accurately so others can adjust your and others’ expectations accordingly.

Who in your care team can help?

Managing energy with Parkinson’s isn’t something you have to figure out alone. Several members of your care team have specific skills and training in this area.

Occupational Therapists (OT) are your most important ally for energy and fatigue management. Occupational therapists are trained specifically in energy conservation techniques and daily activity modification and there’s good evidence behind the work they do, including activity pacing, task analysis, environmental modification, and prioritisation.

What your OT can do for you:

• Conduct a home assessment to identify energy-saving and safety modifications
• Prescribe assistive technology that reduces physical effort
• Run strategies with you or refer you to structured energy management programs
• Help you plan your daily routine around your energy peaks and troughs
• Support you in adapting work tasks and your work environment.

You can access OT through NDIS (if eligible), My Aged Care / Support at Home Packages, private health insurance, or self-funded. Ask your neurologist or GP for a referral on your Chronic Disease Management Plan to get subsidised visits.

Fatigue in Parkinson’s can sometimes be improved with a medication review. Your neurologist, pharmacist or Parkinson’s Nurse can assess whether your current medication and diet schedule, including timing and dose, is contributing to your energy fluctuations, and whether any adjustments might help. They can also rule out other contributors to fatigue, such as sleep disorders (including REM sleep behaviour disorder, which is common in Parkinson’s), depression, or anaemia.

Don’t wait for your neurologist to ask, bring it up. Fatigue is underreported in clinic appointments because people often prioritise motor symptoms over non-motor complaints. It’s worth naming it directly.

This might seem counterintuitive, spending energy to manage energy, but regular, physical activity is one of the most consistently supported interventions for fatigue in Parkinson’s. A physiotherapist can design an exercise program that matches your current capacity, builds gradually, and protects you from overexertion.

Physios can also help with positioning, movement efficiency, and breathing techniques that reduce the physical cost of everyday tasks, all of which feeds directly into your spoon supply.

Fatigue in Parkinson’s frequently overlaps with anxiety, depression, and apathy, and the relationship goes both ways. When emotional and psychological load is high, your physical energy depletes faster. A psychologist can help you develop cognitive strategies for managing the emotional weight of chronic illness, which directly reduces the drain on your daily spoon supply.

Cognitive Behavioural Therapy (CBT) and Acceptance and Commitment Therapy (ACT) have both been used with good results in chronic illness fatigue management.

Your GP is your gateway to the rest of your care team. They can refer you to allied health services, create a Chronic Disease Management Plan (giving you up to five Medicare-subsidised allied health sessions per year), and monitor for other conditions that might be contributing to your fatigue. If you haven’t already talked to your GP specifically about fatigue, as distinct from other Parkinson’s symptoms, it’s worth booking an appointment for exactly that.

Get a social worker to help you navigate all the systems.

A word about ‘borrowing spoons from tomorrow’

Within the spoon theory world, there’s a concept called knife theory. This is the idea that when you run out of spoons and borrow from the next day, you’re essentially ‘grabbing a knife by the blade.’ You might get through today, but you pay for it tomorrow, and possibly the day after that.

This is worth taking seriously. One of the most common patterns in people with Parkinson’s is overexertion followed by extended recovery periods, sometimes called ‘boom and bust’. Pushing hard when you’re feeling good, then crashing and being unable to do basic tasks for days, is not a sign of bad willpower or poor self-discipline. It’s a physiological pattern driven by the nature of the condition.

Quick-start tools for tracking your spoons

You don’t need anything fancy. Some options:

• Paper planner or notebook:
  • Rate your energy on waking (1–10).
  • List your planned tasks and estimate their cost.
  • Reflect at the end of the day on what worked and what drained you more than expected.
  • Daily Spoon Tracker pdf for download
• Phone notes or apps:
  • A simple daily note with a morning energy rating and three priority tasks is enough to start.
  • YOPX app sleep & fatigue check ins.
  • Apps like MyMovesMatter, NowNext, Bearable, Symple, or even a basic habit tracker can help you spot patterns over time.
• A whiteboard on the fridge:
  • Visible and low-effort.
  • Write today’s spoon count in the morning.
  • Cross off tasks as you go.
  • It’s a visual reminder for the household of where you’re at and can reduce the need to explain yourself repeatedly.

You can also rate your fatigue in your YOPX app with the NDIS>Questionnaire & check-ins> Fatigue Severity Scale and export as a PDF to email to you or your care team in preparation for an appointment or medication review.

Helping people close to you understand

One of the most common frustrations for people with young onset Parkinson’s is the gap between how they look and how they feel. Spoon theory can bridge that gap, but sharing it takes a bit of preparation.

A few approaches that others have found helpful:

• Send the original Christine Miserandino article (here) before having the conversation; it does a lot of the heavy lifting
• Use it to explain specific situations: ‘I had a big morning, and I’m down to my last couple of spoons. I need to rest before dinner’
• Are they still not ‘getting it’? Invite your partner or a close family member to an OT or GP appointment, so your care team can also help explain the energy picture
• Be consistent, the more regularly you use the language, the more natural it becomes for everyone. 

Spoon theory won’t fix fatigue. But it can give you a clearer way to see it, talk about it, and make decisions about it, rather than just reacting to the bad days.

Count your spoons. Spend them wisely. And ask for help when you need it.

• Daily Spoon Tracker pdf for download
• Parkinson’s National Infoline: 1800 644 189 (your state Parkinson’s organisation)
• NDIS: 1800 800 110 or ndis.gov.au

References & further reading

Das, Shilpa. (2025). The Spoon Theory: A Journey into the World of Chronic Illness. https://www.researchgate.net/publication/391661264_The_Spoon_Theory_A_Journey_into_the_World_of_Chronic_Illness

Alves da Rocha Rodrigues, I. et al. (2025). Fatigue and neuropsychiatric symptoms in Parkinson’s disease: A narrative review. Frontiers in Neurology.

Elbers, R.G. et al. (2024). Exploring the layers of fatigue in Parkinson’s disease: A comprehensive analysis of its prevalence and contributing factors. PubMed Central.

Alizadeh, N., Packer, T.L., Sturkenboom, I., Eskes, G. & Warner, G. (2022). Managing fatigue in people with Parkinson’s disease: Protocol for a pilot randomised controlled trial. Canadian Journal of Occupational Therapy.

Welsby, E., Berrigan, S. & Laver, K. (2019). Effectiveness of occupational therapy intervention for people with Parkinson’s disease: Systematic review. Australian Occupational Therapy Journal, 66(6), 731–738.

Packer, T.L., Brink, N. & Sauriol, A. (1995). Managing Fatigue: A Six-Week Energy Conservation Course. Therapy Skill Builders.

Parkinson’s Australia (2024). Occupational Therapist. parkinsons.org.au/information-hub/occupational-therapist/

Miserandino, C. (2003). The Spoon Theory. But You Don’t Look Sick. butyoudontlooksick.com

Kluger, B.M. et al. (2016). Diagnostic criteria for fatigue associated with Parkinson’s disease. Movement Disorders.

National Infoline: 1800 644 189  |  parkinsons.org.au  |  youngonsetparkinsons.org.au