Occupational Therapy for Parkinson's Disease: Medication Treats the Body, Occupational Therapy Rebuilds Daily Life

Q: Does occupational therapy really work for people with Parkinson's disease? How does it differ from physiotherapy?

Clinical evidence supports it. In the large Dutch OTiP randomised controlled trial, 191 patients received 10 weeks of individualised home occupational therapy, and their self-perceived performance in daily activities (COPM) improved significantly more than that of the control group (adjusted mean difference 1.2 points, p<0.0001). Physiotherapy mostly looks at gait, balance and fitness. Occupational therapy focuses on whether the patient can carry out meaningful daily activities independently at home (such as dressing, eating, writing, cooking and using the toilet), using cueing strategies, activity redesign, assistive devices and home modification to reach those goals. The two complement each other, and the NICE guideline also recommends referral to both.

Q: What can be done straight away when walking suddenly “freezes” (freezing of gait)?

The patient can use external cues to get around the blocked mechanism for starting a movement. For hearing, a metronome, counting “1-2-1-2” aloud or rhythmic music can be used. For vision, the patient can imagine stepping over a line or an obstacle on the floor, or coloured tape can be stuck on the floor. A meta-analysis of 50 studies with 1,892 people confirmed that rhythmic auditory cueing improves walking speed and stride length, and recommended setting the beat at ±10% of the usual stepping rate. A technique for the moment of freezing is to stop and stand steady first, shift the weight onto one foot, count to three, and then take a big step. These strategies are best designed individually by an occupational therapist or physiotherapist, based on the actual trigger spots in the home (such as doorways, turns and narrow passages).

Q: Handwriting gets smaller and smaller (micrographia). Can it be improved?

Yes. Research shows that simply adding a parallel horizontal line on the paper as a visual cue significantly increases the length of what people with Parkinson's disease write (from about 17.8 cm to 23.4 cm, p=0.008). Adding vertical lines to make a grid brings no extra benefit, so ordinary lined paper is enough. Other research has found that visual cueing and writing feedback training both widen the size of the writing, and that the effect extends to words that were not practised. The result is better when this is combined with a thick pen barrel, a slower pen stroke and a constant reminder to “write big”.

Q: Should people with Parkinson's disease do more exercise to prevent falls?

It depends on the stage of the condition. A randomised controlled trial by Canning and colleagues (231 people, 6 months of home exercise) found that exercise did not significantly reduce falls overall. In the group with milder disease, however, the number of falls fell clearly (incidence rate ratio 0.31, p<0.001), whereas patients with more severe disease showed a trend towards more falls. In other words, exercise benefits body, mind and quality of life, but for patients in the middle and later stages exercise alone is not enough to prevent falls, and it must be combined with home modification, cueing strategies and an environmental safety assessment. A therapist should design the programme for the individual, and exercising blindly should be avoided.

Q: Is constant tiredness, or feeling drained after a little housework, a sign of “not trying hard enough”?

No. Fatigue is one of the three most disabling symptoms rated by patients with Parkinson's disease themselves, and it is not a matter of lack of willpower. Occupational therapy provides energy conservation strategies, including simplifying tasks, planning ahead and setting priorities, adapting the environment, doing activities seated, and working with the “on/off” fluctuation in medication effect. More tiring activities such as bathing and cooking are scheduled for the “on” period when the medication works best. The six-week energy conservation programme “Managing Fatigue” in occupational therapy was designed for this purpose.

Q: Why is occupational therapy at home especially important for Parkinson's disease?

Compensation strategies in Parkinson's disease depend heavily on the actual environment the patient is in. The key to the OTiP trial's success was that the intervention took place at home, in the patient's real living space. The RESCUE trial also showed that the effect of cueing training fades within a few weeks after training stops. The strategies therefore have to be built into the routes the patient actually uses at home, and carried out continuously by the patient and carers, and not practised once in a clinic. A home visit lets the therapist assess freezing triggers, fall risks and daily routes directly in the home and adjust on the spot, so that what is trained is carried through into daily life.

Parkinson's disease is a chronic neurodegenerative condition caused by the loss of dopamine-producing cells in the brain. Medication can replace dopamine and control tremor and stiffness, but it cannot directly solve the more immediate problems of daily life: whether the patient can bathe independently today, do up buttons, or sign their own name. This is the core territory of occupational therapy, and neither exercise nor medication alone covers it. This article takes the view that the success of an intervention in Parkinson's disease should not be judged only by the degree of tremor or the UPDRS score. It should depend more on whether the patient can carry out meaningful activities independently at home. The sections below go through four evidence-based strategies in turn: external cueing, training for small handwriting, redesigning daily activities together with energy conservation, and fall prevention.

The roles of medication and occupational therapy in Parkinson's disease

The loss of dopamine cells in Parkinson's disease cannot be reversed. However, the large OTiP randomised controlled trial showed that 10 weeks of home occupational therapy, training the activities the person considers meaningful, clearly improved the patient's own sense of how well they carried out daily activities (COPM adjusted mean difference 1.2 points, 95% CI 0.8–1.6, p<0.0001), with no related adverse events during that time (Sturkenboom et al., 2014). The UK NICE guideline for adults with Parkinson's disease also recommends that patients who have difficulty with daily activities or function should be referred for occupational therapy (NICE, 2017).

Parkinson's disease in Hong Kong

Parkinson's disease is a common neurodegenerative condition, second in prevalence only to dementia, and its incidence rises with age. As Hong Kong's population ages rapidly, the number of affected families will keep growing, and it is all the more urgent to intervene early with daily function as the clinical goal.

Dopamine

The neurotransmitter that degenerates

Medication can replace this substance, but it cannot reverse the degeneration of the cells

+1.2 points

Improvement in patient-rated daily activity performance with home occupational therapy

COPM, 95% CI 0.8–1.6, p<0.0001 (Sturkenboom et al., 2014)

10 weeks

Course of individualised home therapy in the OTiP trial

Activities meaningful to the individual patient were used as the training goals (Sturkenboom et al., 2014)

How the four main motor symptoms affect daily life

The four core motor symptoms of Parkinson's disease all end up showing in different details of daily life. To deal with the problem effectively, it must first be clear which daily activity each symptom is getting in the way of.

Resting tremor

The hands shake involuntarily when relaxed and at rest, with a movement between the thumb and fingers like “rolling a pill”
It affects eating (a shaking hand spills food from a spoon), pouring water, writing and fastening small buttons

Muscle stiffness (rigidity)

The muscles of the limbs and body stay tense, and movement feels as if it catches in steps, like a cogwheel
It affects larger movements such as turning, putting arms into sleeves, and getting up from a chair

Slowness of movement (bradykinesia)

Movements become slow and smaller, and everyday tasks take much longer
It affects fine and continuous movements such as showering, doing up buttons and writing (the writing gets smaller and smaller)

Postural instability

The body leans forward and balance reactions weaken, so the person loses balance and falls easily
It affects showering while standing, changing position, and moving around the home safely

How the four motor symptoms map onto daily difficulties

Turning a medical symptom into a real daily situation is what sets the specific goals of occupational therapy. The links between the two are listed below.

Tremor → eating and writingA shaking hand makes it hard to hold a spoon and a pen steady. Weighted cutlery, non-slip mats and writing techniques can help.

Stiffness → dressing and transfersTense muscles make it hard to put arms into sleeves and to get out of bed. The patient can wear loose clothes, dress while seated, and have handrails fitted beside the bed or on the wall.

Slowness → bathing and fine movementsSlower and smaller movements make showering and doing up buttons take a long time. This can be improved by simplifying the steps, deliberately making movements bigger, and using assistive tools.

Postural instability → moving around and safetyWeaker balance raises the risk of falls. The risk can be lowered through home modification, cueing techniques and an environmental assessment.

Using the ability to do daily activities as the measure of recovery

The success of an intervention in Parkinson's disease should be judged not only by tremor or the UPDRS score, but by whether the patient can independently carry out meaningful activities such as dressing, eating, writing and using the toilet at home.

The central claim of this article

This view of recovery is supported by a large clinical trial. The main outcome measure used in the OTiP trial was the patient's own rating of whether they can do the everyday things that matter to them, and not just scores on movement tests in a laboratory.

Results of the large OTiP randomised controlled trial

Summary of the OTiP trial (Sturkenboom et al., 2014)

Design: a multicentre randomised controlled trial in 10 hospitals in the Netherlands, with the assessors not knowing which group a patient belonged to (assessor blinding)
Participants: 191 patients with Parkinson's disease who had difficulty with daily activities
Treatment: 10 weeks of individualised home occupational therapy, training the daily activities the patient considered meaningful
Result: after 3 months, the patients' own rating of daily activity performance (COPM) had improved clearly, with an adjusted mean difference between groups of 1.2 points (95% CI 0.8–1.6, p<0.0001), and no related adverse events occurred
Guideline: the UK NICE guideline recommends referring patients who have difficulty with daily activities for occupational therapy (NICE, 2017)

The RESCUE trial: why cueing strategies must keep being used at home

If effective training stays in the clinic and the patient cannot apply it at home, the training is of little use. The RESCUE trial illustrates this key problem.

The RESCUE single-blind randomised crossover trial (153 patients at Hoehn and Yahr stages II–IV) found that after 3 weeks of home rhythmic cueing training, patients' posture and gait scores (PG score +4.2%, p=0.005), walking speed, stride length and timed balance improved straight away. In patients with freezing of gait, the severity of freezing also fell by 5.5% (p=0.007). However, these gains faded clearly 6 weeks after training stopped (Nieuwboer et al., 2007). This shows that cueing cannot rest on a single practice session. A therapist needs to design it so that it can be built into the home environment for the long term, and the patient and carers can keep using it every day.

Strategy 1: the principle and use of external cueing

People with Parkinson's disease have difficulty starting movements (as in freezing of gait and small handwriting) because the mechanism in the basal ganglia that regulates internal rhythm and movement size no longer works properly. External cueing uses an outside signal to “borrow” cortical pathways in the brain that are still intact. It bypasses the damaged internal pacemaker and restores the proper rhythm and size of movement straight away.

The internal pacemaker is faultyDamage to the basal ganglia makes it hard for the patient to start a movement on their own and to keep movements rhythmic and large enough, for example in continuous walking.

External cues “borrow” another routeVisual or auditory signals can bypass the damaged neural pathway and straight away improve walking speed, stride length and the size of handwriting (Ghai et al., 2018; Nieuwboer et al., 2007).

They must be used continuouslyThe RESCUE trial showed that the effect fades 6 weeks after training stops, so these cueing methods must be built into daily life and used over the long term (Nieuwboer et al., 2007).

How visual and auditory cues are used

Auditory cues

Method: a metronome, rhythmic music, or counting “1-2-1-2” aloud
Evidence: a meta-analysis (50 studies, 1,892 people) confirmed that rhythmic auditory cueing improves walking speed and stride length (Ghai et al., 2018)
Suggested dose: set the beat at ±10% of the patient's preferred stepping rate, for 20–45 minutes a day on at least 3–5 days a week (Ghai et al., 2018)
Suitable for: slow walking, short steps, freezing of gait

Visual cues

Method: coloured tape on the floor, or imagining stepping over a line or obstacle on the ground
Evidence: home rhythmic cueing training immediately improved gait scores and stride length (Nieuwboer et al., 2007)
Use for handwriting: a single horizontal line on the paper is enough to enlarge the writing (see Strategy 2)
Suitable for: difficulty starting to walk at fixed trigger points (doorways, turns, narrow passages)

Steps to take when freezing of gait occurs

1
Stop and stand steady
When the feet suddenly “stick”, do not force the body forward. Stop first and stand steadily on both feet, to avoid losing balance and falling because the body is leaning forward.
2
Give yourself an external signal
Say “1-2-3” silently or aloud, or imagine stepping over a line or obstacle on the floor, and use this outside rhythm to start the steps again (Nieuwboer et al., 2007).
3
Shift the weight onto one foot and take a big step
First shift the body weight onto one foot, then consciously take a “big step”, and avoid taking small, shuffling steps.

Strategy 2: using horizontal lines to improve small handwriting (micrographia)

Research data on horizontal-line visual cues (Bryant et al., 2010; Nackaerts et al., 2017)

With a parallel horizontal line added to the paper as a visual cue, the length of what patients wrote rose from 17.83±3.93 cm without a line to 23.36±5.82 cm (p=0.008)
With grid lines the length also rose, to 22.65±4.04 cm (p=0.003). This means that adding vertical lines to make a grid brings no extra benefit, and ordinary lined paper is enough
Both short-term writing trainings, with visual cueing or with intelligent feedback, can enlarge the writing, and the effect extends to words that were not practised (Nackaerts et al., 2017)

Key points for practising writing at home

Use lined paper—A single parallel horizontal line is already an effective visual cue that clearly enlarges the writing, and there is no need to buy grid paper specially (Bryant et al., 2010).
Build the habit of writing big—When writing, deliberately make each character bigger than usual, to counter the tendency for writing to get smaller and smaller. The effect is better when cues and feedback are combined (Nackaerts et al., 2017).
Use a thick pen barrel and slow down—A thicker pen barrel means the hand does not have to grip the pen so hard, and writing more slowly makes it easier to keep the writing large.
Move from short sentences to signatures—Fit writing practice into daily life, for example by practising signatures and writing shopping lists, so that writing big carries over into real life.

Strategy 3: adjusting daily activities and the “make movements bigger” principle (the LSVT BIG idea)

Slowness of movement leads patients to make movements smaller and smaller, so the core of compensation is to consciously make movements bigger. LSVT BIG is an exercise programme built on this idea of amplitude, and occupational therapy brings the same principle into the redesign of daily activities.

Make movements biggerDuring daily activities, deliberately make movements on the large side, such as taking big steps and reaching out widely, to offset the tendency of Parkinson's disease to shrink movements.

Evidence for LSVT BIGA randomised study of 42 people showed that after LSVT-BIG training the UPDRS-III motor score improved by -6.6 at week 16 (p<0.001), and the patients themselves also found it very helpful. This shows that training built on larger movement amplitude is effective (Ebersbach et al., 2014).

Redesign the activity, not drill itThe principle of larger movements is applied within daily routines such as dressing, eating and cooking, so that what is trained directly helps with self-care.

Dealing with dressing, bathing, cooking and taking medication

Common daily difficulties

Dressing: difficulty with buttons, slow movements
Bathing: unsteady standing, slow movements
Cooking: difficulty cutting, unsteady pouring
Medication: difficulty opening bottle caps, forgetting to take medicine
Eating: tremor spills the food from the spoon

Occupational therapy strategies

Dressing: Velcro fastenings, zip pulls, dressing while seated
Bathing: shower chair, handrails, long-handled bath brush
Cooking: electric appliances, non-slip mats, lightweight utensils
Medication: easy-open bottles, pill organisers, timed reminders
Eating: weighted cutlery, thicker handles, non-slip placemats, plate guards

Strategy 4: saving energy and making use of the “on” period of medication

Fatigue is one of the three symptoms that patients with Parkinson's disease say affect daily life the most, and it does not mean the patient is not trying hard enough. Occupational therapy has a six-week energy conservation programme called “Managing Fatigue” (a pilot randomised controlled trial with 54 participants, delivered by video). It teaches patients how to simplify the steps of an activity, analyse tasks, adapt the environment, tell others how tired they are, and plan ahead and set priorities. This is the concrete way occupational therapy helps patients manage their energy (Alizadeh et al., 2022).

How to spread energy and fit activities to medication timing

Schedule activities for the medication “on” period—Do the more tiring activities, such as showering, cooking and going out, in the “on” period when the medication works best, and avoid struggling through them in the “off” period when it wears off (Alizadeh et al., 2022).
Simplify tasks—Leave out unnecessary complicated steps and use labour-saving tools, so that daily tasks become easier to manage (Alizadeh et al., 2022).
Plan ahead and set priorities—Spread the most tiring tasks of the day over different times, to avoid using up energy through back-to-back activity, and deal with the most important things first (Alizadeh et al., 2022).
Do activities seated—Anything that can be done sitting down, such as preparing ingredients and dressing, is done seated. This saves the energy used in standing and also lowers the risk of falls (Alizadeh et al., 2022).

Strategy 5: preventing falls and the role of exercise

Effect of exercise on fall prevention at different stages of the disease (Canning et al., 2015)

Design: a randomised controlled trial of 231 people with Parkinson's disease, who exercised at home 3 times a week for 40–60 minutes each time, for 6 months in total
Overall result: home exercise did not clearly lower the overall fall rate
Milder disease: patients with milder disease had clearly fewer falls (incidence rate ratio 0.31, 95% CI 0.15–0.62, p<0.001)
More severe disease: patients with more severe disease showed a trend towards more falls
Other benefits: the exercise group still did clearly better than the control group in physical activity performance, fear of falling, mood and quality of life

Exercise does benefit body and mind, but for patients in the middle and later stages exercise alone is not enough to prevent falls, and it must be combined with home modification, cueing strategies and an environmental safety assessment.

Checklist of home fall risks and how to improve them

Home fall risk check and suggested improvements

Remove rugs, clutter on the floor and loose cables, and keep walking routes clear
Fit handrails in corridors and bathrooms, and improve the lighting indoors
Put non-slip mats in the bathroom and use a shower chair, to lower the risk of falling while showering standing up
Fit a handrail beside the bed, to help the patient get in and out of bed safely
Wear well-fitting, non-slip shoes, and avoid walking around in slippers
Put visual cue tape in places that often trigger freezing of gait (such as doorways and corners)
Do not ask patients in the middle or later stages to prevent falls by training to walk faster

Non-motor symptoms: dealing with cognition, mood and fatigue

Parkinson's disease is not a condition that affects only motor function. Occupational therapy takes a whole-person view and includes non-motor symptoms such as cognition, mood and fatigue, so that treatment improves overall quality of life and not just a single movement.

Cognitive changesWhen executive function declines and the patient finds it hard to deal with several things at once, tasks can be broken down into steps so that the patient concentrates on one thing at a time, with external cues and memory aids to help.

Managing moodWhen there is depression, anxiety or less social contact, the patient can be helped to keep doing meaningful activities and be encouraged to take part in social life. This is the whole-person approach promoted in the NICE guideline (NICE, 2017).

FatigueFatigue is a common symptom that patients say affects daily life the most, and it can be managed with energy-saving techniques and by adjusting daily routines (Alizadeh et al., 2022).

What home occupational therapy does for people with Parkinson's disease

Key points

Parkinson's disease cannot be reversed, but 10 weeks of individualised home occupational therapy can clearly improve the patient's own rating of daily activity performance (COPM +1.2 points, p<0.0001). The NICE guideline also recommends referring patients who need it for occupational therapy (Sturkenboom et al., 2014; NICE, 2017).
An important measure of progress in recovery is not only the degree of hand tremor or the UPDRS score, but whether the patient can independently do daily activities at home such as dressing, eating, writing and going to the toilet.
External cues (such as an auditory beat, a line on the paper or tape on the floor) can borrow intact neural pathways to bypass the damaged internal rhythm system and immediately improve gait and the size of handwriting. The effect fades after they stop being used, so they must be built into the home environment and used continuously (Ghai et al., 2018; Nieuwboer et al., 2007).
For small handwriting, adding a single horizontal line on the paper as a visual cue is enough to enlarge the writing clearly. Learning to save energy and arranging the day around the medication “on” period also keeps up daily activity better than struggling through (Bryant et al., 2010; Alizadeh et al., 2022).
Exercise for fall prevention clearly works only for patients with milder disease. Patients in the middle and later stages must have home modification and an environmental safety assessment as well, and should not simply be given exercise training (Canning et al., 2015).
How well assistive and compensation methods work depends heavily on the actual living environment. The training carries over into daily life only when the therapist visits the patient's home, assesses directly which spots tend to trigger freezing of gait, where the fall risks are and what routes the patient normally takes, and adjusts on the spot (Sturkenboom et al., 2014; Nieuwboer et al., 2007).

Frequently asked questions

Does occupational therapy really work for people with Parkinson's disease? How does it differ from physiotherapy?

Clinical evidence supports it. In the large Dutch OTiP randomised controlled trial, 191 patients received 10 weeks of individualised home occupational therapy, and their self-perceived performance in daily activities (COPM) improved significantly more than that of the control group (adjusted mean difference 1.2 points, p<0.0001). Physiotherapy mostly looks at gait, balance and fitness. Occupational therapy focuses on whether the patient can carry out meaningful daily activities independently at home (such as dressing, eating, writing, cooking and using the toilet), using cueing strategies, activity redesign, assistive devices and home modification to reach those goals. The two complement each other, and the NICE guideline also recommends referral to both.

What can be done straight away when walking suddenly “freezes” (freezing of gait)?

The patient can use external cues to get around the blocked mechanism for starting a movement. For hearing, a metronome, counting “1-2-1-2” aloud or rhythmic music can be used. For vision, the patient can imagine stepping over a line or an obstacle on the floor, or coloured tape can be stuck on the floor. A meta-analysis of 50 studies with 1,892 people confirmed that rhythmic auditory cueing improves walking speed and stride length, and recommended setting the beat at ±10% of the usual stepping rate. A technique for the moment of freezing is to stop and stand steady first, shift the weight onto one foot, count to three, and then take a big step. These strategies are best designed individually by an occupational therapist or physiotherapist, based on the actual trigger spots in the home (such as doorways, turns and narrow passages).

Handwriting gets smaller and smaller (micrographia). Can it be improved?

Yes. Research shows that simply adding a parallel horizontal line on the paper as a visual cue significantly increases the length of what people with Parkinson's disease write (from about 17.8 cm to 23.4 cm, p=0.008). Adding vertical lines to make a grid brings no extra benefit, so ordinary lined paper is enough. Other research has found that visual cueing and writing feedback training both widen the size of the writing, and that the effect extends to words that were not practised. The result is better when this is combined with a thick pen barrel, a slower pen stroke and a constant reminder to “write big”.

Should people with Parkinson's disease do more exercise to prevent falls?

It depends on the stage of the condition. A randomised controlled trial by Canning and colleagues (231 people, 6 months of home exercise) found that exercise did not significantly reduce falls overall. In the group with milder disease, however, the number of falls fell clearly (incidence rate ratio 0.31, p<0.001), whereas patients with more severe disease showed a trend towards more falls. In other words, exercise benefits body, mind and quality of life, but for patients in the middle and later stages exercise alone is not enough to prevent falls, and it must be combined with home modification, cueing strategies and an environmental safety assessment. A therapist should design the programme for the individual, and exercising blindly should be avoided.

Is constant tiredness, or feeling drained after a little housework, a sign of “not trying hard enough”?

No. Fatigue is one of the three most disabling symptoms rated by patients with Parkinson's disease themselves, and it is not a matter of lack of willpower. Occupational therapy provides energy conservation strategies, including simplifying tasks, planning ahead and setting priorities, adapting the environment, doing activities seated, and working with the “on/off” fluctuation in medication effect. More tiring activities such as bathing and cooking are scheduled for the “on” period when the medication works best. The six-week energy conservation programme “Managing Fatigue” in occupational therapy was designed for this purpose.

Why is occupational therapy at home especially important for Parkinson's disease?

Compensation strategies in Parkinson's disease depend heavily on the actual environment the patient is in. The key to the OTiP trial's success was that the intervention took place at home, in the patient's real living space. The RESCUE trial also showed that the effect of cueing training fades within a few weeks after training stops. The strategies therefore have to be built into the routes the patient actually uses at home, and carried out continuously by the patient and carers, and not practised once in a clinic. A home visit lets the therapist assess freezing triggers, fall risks and daily routes directly in the home and adjust on the spot, so that what is trained is carried through into daily life.

Caring for a person with Parkinson's disease often takes a team of different professions. Besides occupational therapy, patients and families can read more about physiotherapy for Parkinson's disease and how it provides gait and balance training. If the patient has difficulty with speech or communication, see speech and language therapy. For daily cognitive and functional maintenance, cognitive training support can be added, with the care team giving continuing help in daily life.