Mr Chan is 68 and was diagnosed with Parkinson’s disease three years ago. He often tells the therapist with a sigh, “I haven’t done much, so why am I so tired that I don’t want to take another step?” His son chips in: “Dad sleeps whenever he has a free moment. Is he just not active enough?” This misunderstanding has been played out in almost every family with Parkinson’s disease. Through Mr Chan’s actual routine in one day, the sections below examine the nature of this fatigue, when it strikes and how to live with it.
7 am: sharing out energy after getting up
Mr Chan usually wakes at seven in the morning, but his body usually does not move freely until about half an hour after he takes the first dose of the day. That half hour is when his body is stiffest and most likely to fall for the whole day. In medical terms this is the “off” period, a gap when the effect of the last dose has worn off and the next has not yet taken effect. He once rushed to get up for the toilet, stood unsteadily at the bedside and nearly fell.
The therapist therefore helped him change the steps for getting up. There is no hurry, and it is done in three steps: first sit steadily on the edge of the bed to get his bearings, hold the bedside rail that has been fitted with both hands, then stand up slowly. Along the corridor from the bedroom to the bathroom, and inside the toilet, extra points of support were added, including wall handrails, non-slip mats and a stable low cabinet placed close by that does not move. These changes are not major building work. They were arranged by the home-visiting occupational therapist, who went to his home and followed the route he actually walks every day.
Before going further into the routine, the myth in his son’s remark about not being active enough must be cleared up. Fatigue in Parkinson’s disease is not psychological, and it is not the same as slowness of movement or simple daytime drowsiness. It is a persistent, lingering feeling of exhausted energy that comes from an imbalance of the brain’s chemical messengers (such as dopamine and noradrenaline). A systematic review and meta-analysis combining 44 studies and 7,427 people estimated that about half of people with Parkinson’s disease are affected by fatigue, making it one of the most common non-motor symptoms and one of those that most affect daily function (Siciliano et al., 2018).
Once Mr Chan stopped blaming himself for being tired after doing a little, he had the energy to learn how to share out his strength, instead of pushing on every time until he was exhausted before stopping. Understanding that fatigue comes from the body’s energy really being used up faster is already the first step in dealing with it.
9 to 11 am: using the medication “on” period
After breakfast, once the medicine is working, Mr Chan enters the time when his body is most relaxed and his movement smoothest, the “on” period. These two hours are the most valuable capital he has in the day, so the therapist deliberately arranged the tasks that use the most energy and need the steadiest movement into this time. Bathing, going out to buy vegetables and any housework that needs standing and walking are all done together then.
Bathing itself uses a great deal of energy and carries a very high risk of falling. Mr Chan now showers sitting down, using a shower chair together with a long-handled bath brush and a wall handrail, which greatly reduces the time spent standing and bending. The rule of sitting wherever possible extends to the daily details outside the bathroom. He cuts vegetables, stirs ingredients and folds clothes all sitting at the table, and the things he uses most are kept at heights he can reach without bending or stretching.
Why does the timing have to be worked out so precisely? Catching Mr Chan’s “on” period relies on objective records and not on feeling alone. The therapist asked him to fill in a simple fatigue and medication diary for several days in a row, recording which time of day his energy was lowest, whether he happened to be in the “off” period when he felt tired, and how long he needed to rest after specific activities (such as bathing, going out and cooking) before his energy came back. After a few days even he could see the pattern: nine to eleven in the morning was his best time. Once that time was found, all the later arrangements of his routine had a real basis.
Afternoon: resting before the energy runs out
Mr Chan used to have a habit. When he felt well in the morning, he would get everything done in one go, with the shopping, the cooking and the mopping all finished at once. By three or four in the afternoon he would be limp and drained, and could do nothing for the whole rest of the day. This is a typical case of using up all the energy in one go.
The core strategy of occupational therapy for fatigue is called energy management or energy conservation. The point is not to do nothing and lie in bed all day, but to use limited energy well and get more meaningful things done. The therapist and Mr Chan boiled his day down to four habits. This is the only list worth noting in the whole article, because it is the pattern Mr Chan follows every day:
- Do the most important thing first—Every morning Mr Chan now asks himself which one thing he most wants to finish today. Once he has chosen, he saves the precious “on” period for that one thing. Other things that can be let go, such as heavy housework and carrying heavy loads, are left to the family or the caregiver, and he does not need to do everything himself.
- Spread out the tiring tasks and do not crowd them into one day—Mopping, washing clothes and big cleaning jobs are no longer finished on the same day but spread over different days of the week. Even on the same day, rest is arranged between two tiring activities, and he does not push on until his strength is drained before stopping.
- Work a little, rest a little, and rest before getting tired—A job that takes a long time is broken into several short stretches, with a rest sitting down arranged between them beforehand. The aim is to have energy left over afterwards, and not to work until exhausted every time. Rest is part of the plan and is not giving up halfway.
- If it can be done sitting, do it sitting—Showering, preparing food and folding clothes are all done sitting down. This cuts out unnecessary standing, bending and walking back and forth, saves effort and also lowers the risk of falling. Before starting a task, he also puts the tools he needs within reach all at once, so that he does not have to walk back for them halfway through.
In the afternoon, when the medication effect has faded or when his body really feels tired, Mr Chan switches to quiet, low-energy activities: reading the newspaper, listening to the radio, talking to relatives and friends on the phone, or simply sitting to rest. These activities do not depend on steady limb movement and are best done during the off period.
The scientific evidence for energy management
The four habits Mr Chan follows were not ideas the therapist made up on the spot. They come from a structured occupational therapy programme, Packer’s “Managing Fatigue” energy conservation course, which teaches strategies such as simplifying tasks, activity analysis, adapting the environment and setting priorities. We must, however, state the research evidence honestly, because managing the patient’s expectations matters as much as the treatment method itself.
The most weighty basic evidence for this course in fact comes from multiple sclerosis and not Parkinson’s disease. A randomised controlled trial of 169 people showed that the six-week course significantly reduced the effect of fatigue on life and raised patients’ self-efficacy and vitality (Mathiowetz et al., 2005). Applying the course to people with Parkinson’s disease is still at an early stage and is currently explored mainly in pilot randomised controlled trials (Alizadeh et al., 2022). As for exercise, a meta-analysis combining eight trials found that exercise does help to ease Parkinson’s fatigue, but the size of the benefit is small (standardised mean difference about −0.37, 95% confidence interval −0.69 to −0.05; Folkerts et al., 2023). The choice of medication is also limited. An evidence-based medicine review by the International Parkinson and Movement Disorder Society (MDS) states that no single drug has yet shown a consistent benefit for Parkinson’s fatigue (Seppi et al., 2019), so all decisions about medication must be left to the neurologist.
The aim of energy management is to help patients use their strength more wisely and raise their quality of life, but it is not a way of curing fatigue. High-quality evidence specific to Parkinson’s disease is still accumulating. The therapist therefore tries things with the patient and adjusts the approach according to the actual response, and does not promise a fixed figure for the effect.
Arranging mealtimes
Mr Chan once asked, “Does eating meat and eggs weaken the effect of my medicine?” The claim does have a medical basis, but it by no means means cutting out protein on one’s own. The principle is that the protein in food, once broken down, releases amino acids, which compete with levodopa for the same transport channel in the gut and across the blood-brain barrier and so may weaken absorption of the drug (Rusch et al., 2023). This is why the medical profession has a diet strategy called protein redistribution, which takes most of the day’s protein at dinner and keeps the daytime relatively low in protein, to improve the response to levodopa during the day. The idea was laid down in a classic clinical study long ago (Pincus & Barry, 1987).
Note, however, that this diet currently has no agreed standard and no high-quality evidence behind it, and cutting out protein carelessly can lead to weight loss and malnutrition. Mr Chan therefore did not cut down on meat by himself. He discussed it with the neurologist and a dietitian, who designed a menu around his medication schedule. The occupational therapist’s job is to plan the daily routine and not to rule on diet. Where details of medication and protein intake are involved, we arrange a referral, and a separate page on protein and levodopa timing explains this in more depth.
Driving safety after dusk
Mr Chan used to love driving, and after the diagnosis the thing he found hardest to give up was his car. This part bears directly on life and safety and must be explained clearly. Levodopa and dopamine agonist medicines can cause excessive daytime sleepiness, and a few patients even fall asleep suddenly without warning. A questionnaire survey of 638 people in Canada found that about 3.8% of drivers with Parkinson’s disease had fallen asleep while driving (0.7% of them with completely sudden sleep onset without warning; Hobson et al., 2002).
If there is daytime sleepiness, or the person has fallen asleep without noticing, international guidelines advise not to drive and to report the health condition to the doctor in charge and to the Transport Department.
The guideline on Parkinson’s disease in adults from the UK National Institute for Health and Care Excellence (NICE) (NG71) states clearly that any patient with daytime sleepiness or sudden sleep onset should be told not to drive and must inform the relevant licensing authority (in Hong Kong, the Transport Department) (NICE, 2017). The Hong Kong Transport Department has an established mechanism for assessing driving ability. After talking it over with his doctor, Mr Chan decided to put down his car keys for the time being. The decision was not easy, but he understood what was at stake. Please remember that the occupational therapist only gives safety prompts and referral, and whether a patient is fit to drive must be decided by the doctor and the Transport Department.
In closing: seeing Parkinson’s fatigue correctly
Return to Mr Chan’s son and his first misunderstanding. After several months of spending time with his father and making adjustments, the son’s view has changed completely: “Dad isn’t slacking. His body really only has this much power.” This shift in understanding may matter more than buying any piece of equipment. Fatigue is not caused by a lack of effort. It comes from the disease itself. Only when the patient stops blaming himself and the family stop thinking he is avoiding effort is there room for both sides to share out limited energy sensibly.
The trickiest thing about fatigue and fluctuating medication effect is that they happen in real daily situations, in the bathroom, kitchen and corridor of the home. The value of home-visiting occupational therapy is that the therapist goes straight into the patient’s own living environment. The therapist assesses on the spot which daily activities use the most energy, which corner is most likely to cause a fall and which time of day the patient is most alert, and then builds the 4P energy conservation principles and the medication routine into the patient’s real route through the home. These details cannot be measured in a clinic. For other support for people with Parkinson’s disease in daily self-care, see the pages on small handwriting and writing and support for caregivers, or go back to the overview of occupational therapy for Parkinson’s disease.