Parkinson's disease: an animated, cited guide

This page needs JavaScript for its animations. The outline and key answers are below, and every claim in the full version carries a numbered citation.

Not medical advice. Parkinson's Companion is an educational synthesis of published literature. It does not replace a clinician.

What is in it

What Parkinson's is Parkinsonism versus Parkinson's disease, who it affects, the numbers.
The dopamine pathway Substantia nigra to striatum, the go and brake loops, and what losing dopamine does.
Alpha-synuclein and Lewy bodies From a small synaptic protein to a Lewy body, and how it may spread.
How it spreads: Braak stages Six stages from the brainstem to the cortex, and the body-first debate.
Genes and inheritance LRRK2, GBA1, SNCA and parkin, founder populations, and what a test means.
Before the tremor Dream enactment, smell, constipation and the prodromal criteria.
Stages and symptoms Hoehn and Yahr, motor and non-motor symptoms, and how fast it moves.
Diagnosis and the MDS criteria The clinical criteria as a calculator, DaT scans and synuclein tests.
The differential Essential tremor, drug-induced parkinsonism, MSA, PSP and Lewy body dementia.
Levodopa and carbidopa From the pill to the striatum, step by step.
Levodopa over time Wearing-off, dyskinesia, the narrowing window and what smooths it.
The other medicines Agonists, MAO-B and COMT inhibitors, amantadine and the order of use.
Deep-brain stimulation Targets, the stimulation field, the beta rhythm and what the trials found.
Beyond movement Mood, hallucinations, dementia, sleep and blood pressure.
Risk and protection Pesticides, solvents, head injury, smoking, coffee and exercise.
Living with Parkinson's Exercise, therapy, falls, speech, work, caregiving and the end of life.
Nursing care Medicines on time, drugs to avoid, swallowing, assessment, documentation.
Toward a cure Synuclein antibodies, GLP-1 drugs, LRRK2 and GBA1, cells and genes.
History and people From James Parkinson's 1817 essay to the synuclein test.
Flashcards and mnemonics Flip cards by topic.
Quiz Questions with explanations.
Glossary Every term, searchable.
Sources Every reference behind the guide.

Part 4 · Living, caring, preventing

Nursing care

What guidelines and studies say about nursing a person with Parkinson's: the assessment scales and how they are scored, giving time-critical medicines on time, the drugs that can make Parkinson's worse, nil by mouth and surgery, safety, devices, teaching and documentation. Written for nursing students; every claim links to its source.

ScopeThis module reports what guidelines, drug labels and published studies say. It is not a care plan and not advice, and it does not replace local protocols, your scope of practice or the prescriber. Doses and rules are quoted as published. Nothing should be changed without a clinician, and Parkinson's medicines must never be stopped suddenly.

The late dose clock

In hospital, levodopa has to be given at the person's own times, not the ward's. Choose how the drug round goes and which standard to measure it against, then press play to run one day. The clock and the ribbon show how the person's movement changes as each dose lands on time, late, or not at all.

Drug round Window

Time of day

Schematic. The schedule, ward rounds and response curve are invented to show the idea. Levodopa is drawn taking about 20 to 30 minutes to act. ¹¹⁴ The time windows and the study figures in the notes come from the sources.

Nursing care by topic

MDS-UPDRS: four parts, one 0 to 4 scale

The Movement Disorder Society revision of the Unified Parkinson's Disease Rating Scale has 65 items in four parts, against 55 in the original. It was validated in 877 patients at 39 sites (Cronbach's alpha 0.79 to 0.93 across parts; rho 0.96 against the old UPDRS), and its factor structure supports reporting a sum for each part rather than one total. ¹²⁸ Pick a part to see its items.

Every item uses the same anchors: 0 normal, 1 slight, 2 mild, 3 moderate, 4 severe. The maximum scores and the 0 to 260 total are derived by arithmetic from the item counts; the official form does not print them. ²²⁴

Part III change: is it clinically important?

Teaching tool, not a clinical record

Earlier Part III score

Later Part III score

In 728 paired visits from 260 patients, anchored to the clinician's global impression, the minimal clinically important difference for Part III was −3.25 points for improvement and +4.63 points for worsening. The thresholds are not symmetrical. ¹⁵² The form records whether the person is ON or OFF and how many minutes have passed since the last levodopa dose, so a change can be read against the motor state at each visit. ²²⁴

Hoehn and Yahr staging

Stage wording as printed on the MDS-UPDRS form. ^146,224

MDS critique The MDS Task Force lists weaknesses: the scale mixes impairment with disability, it is not linear, it leans heavily on postural instability, and it says nothing about non-motor problems. Reliability and validity are best supported for stages 2 to 4. The "modified" scale with half-stages is widely used but had no clinimetric data. The Task Force recommends keeping the original five-point scale, reporting medians and ranges, and analysing change with nonparametric methods. ¹²⁷

Lying and standing blood pressure

The consensus definition of orthostatic hypotension is a sustained fall in systolic pressure of at least 20 mmHg, or in diastolic pressure of at least 10 mmHg, within 3 minutes of standing or of head-up tilt to at least 60 degrees. The recommended method is to lie supine for at least 5 minutes, then stand for 3 minutes, measuring just before standing and at 1 and 3 minutes; sitting for 5 minutes then standing is an acceptable alternative. ¹²³ Enter readings or load an example to see how the definition applies.

Teaching tool, not a clinical record. Examples are invented.

SystolicDiastolicHeart rate Supine, after ≥5 min Standing, 1 min Standing, 3 min

Taking a rate-limiting drug, such as a beta-blocker

The 30/15 criterion

In people with supine hypertension (supine systolic 150 mmHg or more, or diastolic 90 or more), a fall of 30 mmHg systolic or 15 mmHg diastolic "may be a more appropriate criterion", because the size of the fall depends on the starting pressure. It is a threshold for supine hypertension, not a marker of a neurogenic cause. ¹²³

Heart rate

A heart-rate rise of less than 15 bpm when orthostatic hypotension occurs suggests a neurogenic cause; non-neurogenic OH typically shows a rise of more than 15 bpm within 3 minutes. The heart-rate criteria apply only when blood pressure actually falls and no rate-limiting drug is present. ¹²³

Severity and next steps

The panel grades severity from grade 1 (infrequent symptoms, unrestricted standing, a 20 to 30 mmHg systolic fall) to grade 4 (standing time under 1 minute, a fall of more than 30 mmHg or incapacitation). ¹²³ When OH develops, NICE recommends reviewing antihypertensives including diuretics, dopaminergics, anticholinergics and antidepressants. ²⁴¹ In a meta-analysis of 25 studies, pooled prevalence in Parkinson's was 30.1%. ³⁶⁰

Two cut-offs to try: MoCA and Timed Up and Go

MoCA score Timed Up and Go, seconds

MoCA in 114 people with Parkinson's and 47 controls: below 26 of 30 detected PD mild cognitive impairment with 90% sensitivity and 75% specificity; below 21 detected PD dementia with 81% sensitivity and 95% specificity. It performed better than the MMSE. ⁷⁶ Timed Up and Go in 2,097 patients at 16 centres: the model classified 74% to 75% correctly as fallers or non-fallers, with a proposed cut-off of 11.5 seconds. ²⁴⁶

The other scales at a glance

Tool	What it covers	Structure and scoring	Key figure
PDQ-39	Health-related quality of life, one-month recall	39 self-report items in 8 scales: mobility, activities of daily living, emotional well-being, stigma, social support, cognitions, communication, bodily discomfort. Summary index 0 to 100, higher is worse. ^263,283	In EARLYSTIM the index improved 7.8 points with neurostimulation and worsened 0.2 with medical therapy, a sense of what a large change looks like. ³²⁴
PDQ-8	Short form of the PDQ-39	8 items, one from each scale, summed to one overall figure. ²⁶³	Published by Jenkinson and colleagues in 1997. ²⁶³
NMSQuest	Screening for non-motor symptoms	30 self-completed items. A screen, not a graded scale: no overall disability score. ⁵⁶	People with PD reported a median of 9 non-motor symptoms against 5.5 in controls; many had never told a professional. ⁵⁶
NMSS	Rating non-motor burden	30 rated items in 9 domains: cardiovascular, sleep and fatigue, mood and cognition, perceptual problems, attention and memory, gastrointestinal, urinary, sexual function, miscellany. Per-item scoring rules were not verified for this guide. ⁵⁷	Mean 56.5 ± 40.7 (range 0 to 243) in 242 patients; only one reported no non-motor symptoms. ⁵⁷
QUIP / QUIP-S	Impulse-control and related disorders	Three sections: four impulse-control disorders (gambling, sex, buying, eating); punding, hobbyism and walkabout; compulsive medication use. A positive screen leads to a full clinical interview. ³⁷⁰	Sensitivity 96% (QUIP) and 94% (QUIP-S) for any disorder. ³⁷⁰
SDQ	Swallowing	15 yes/no items; cut-off score 11. ²⁰⁷	80.5% sensitivity, 81.3% specificity against clinical and endoscopic (FEES) evaluation in 57 patients. Of 24 who denied problems, 12 would have been referred on the SDQ alone. ²⁰⁷
MDT-PD	Swallowing, early disease	26 items (alpha 0.91). ³³⁵	Dysphagia detected with 90% sensitivity and 86% specificity; aspiration risk with 82% and 71%. 73% of 82 validation patients had dysphagia. ³³⁵
PDSS	Night-time sleep problems	15-item visual analogue scale, developed in 143 patients and 137 controls. ⁵⁵	The paper notes sleep problems may affect up to 96% of people with PD. ⁵⁵
Epworth unverified scoring	Daytime sleepiness	How likely to doze in 8 everyday situations. The per-item 0 to 3 scale, the 0 to 24 total and the normal cut-off are widely reproduced but unverified against the primary paper. ¹⁶⁵	The total separated healthy controls from people with sleep apnoea, narcolepsy and idiopathic hypersomnia. ¹⁶⁵
Home diary	Motor fluctuations at home	Each half-hour marked asleep, OFF, ON, ON with non-troublesome or ON with troublesome dyskinesia (see Teaching). ¹³⁶	83% of 302 patients completed six diary days without errors. ¹³⁶

Two standards for "on time"

NICE quality statement 4: adults with Parkinson's in hospital or a care home take levodopa within 30 minutes of their individually prescribed time. ²⁴² The Parkinson's Foundation's US hospital summary says "within ±15 minutes of at-home schedule". ²⁸⁴ Parkinson's UK asks hospitals to report any dose more than 30 minutes late as an adverse event. ²⁹⁸ Slide the time the dose is given.

Given

How often doses are late: the UK audit

UK Parkinson's Audit figures as summarised by Parkinson's UK. ²⁹⁸

Get It On Time, 2023

The system around the dose

Among those affected, 40% said the delay had a negative or significantly negative effect. Missed doses are cited as adding an average of 4 days to a stay; in 2021/22 the mean emergency Parkinson's admission in England lasted 10.2 days, and about a third of people with Parkinson's in England are admitted each year. ²⁹⁸

Freedom of Information returns (May 2023): one in four English trusts does not let people take their own medication; only 52% require ward staff to train on time-critical medicines; 81% have e-prescribing, but only 58% use it to report on-time administration and only 37% can alert staff to time-critical medicines; 47% of trusts with an A&E have no system for on-time Parkinson's medication there. ²⁹⁸

Exam hook58% not on time every time in 2022; report more than 30 minutes late as an adverse event. ²⁹⁸

What the outcome studies found

Study	Setting	What was found
Gerlach 2012	Dutch survey, 684 people; 18% had been in hospital in the past year	Of those admitted, 21% had worse motor symptoms, 33% at least one complication and 26% received incorrect anti-parkinsonian medication. Incorrect medication was linked to deterioration (OR 5.8, 95% CI 2.5 to 13.7), as were infections (OR 6.7). ¹²²
Hou 2012	US veterans, 89 patients, 3,873 doses timed by barcode	675 incorrect administrations: 322 omitted, 300 late by 30 minutes or more, 53 early by 30 minutes or more. Contraindicated drugs were prescribed for 19 patients. Correct administration was lower in the first 2 days (74.6% vs 82.8%) and higher with a neurology consult (85.5% vs 76.5%). ¹⁵⁴
Martinez-Ramirez 2015	339 encounters, 212 patients	Delayed or missed doses: mean stay 8.2 vs 3.6 days. Contraindicated dopamine blockers given in 23% (71/339), with longer stays (7.5 vs 5.9 days). ²¹⁸
Lance 2021	New Zealand, single site, before and after	Staff education, sticker alerts and pharmacist priority review cut medication errors from 22.5% to 9.3% (P < 0.001). Complications (45% to 38%) and mean stay (13 to 8 days) fell, not significantly. At baseline one death was directly attributed to a medication error. ¹⁸³

Observational All of these are surveys, audits or before-and-after studies. The research for this guide found no randomised trial of on-time dosing, so the link between late doses and harm is an association. ^122,154,183

Never stopped suddenly

Guideline

NICE 1.3.2 and 1.3.3

Antiparkinsonian medicines should not be withdrawn abruptly, or allowed to fail suddenly through poor absorption (for example gastroenteritis or abdominal surgery), because of the risk of acute akinesia or neuroleptic malignant syndrome. NICE advises against "drug holidays" for the same reason. ²⁴¹

Parkinsonism-hyperpyrexia syndrome

It looks like neuroleptic malignant syndrome: rigidity, fever and reduced consciousness, sometimes with autonomic instability and a raised CK. Complications include acute renal failure, aspiration pneumonia, DVT and PE, and DIC. Reported mortality is up to 4%, and about another third are left with permanent sequelae. ²⁴⁰

Exam hookAbrupt withdrawal: rigidity + fever + reduced consciousness + raised CK. ²⁴⁰

The levodopa label

The carbidopa-levodopa label describes sporadic cases of an NMS-like syndrome after dose reduction or withdrawal and advises close observation when levodopa is cut abruptly, "especially if the patient is receiving neuroleptics". ¹⁰²

What to observe when doses are missed

Tremor against the person's baseline
Temperature, respiratory rate, blood pressure
Cognition, with the 4AT
Swallowing
Creatine kinase

Parkinson's UK also names dopamine agonist withdrawal syndrome as a risk alongside NMS-like syndrome. ³⁰⁰ In one series, 5 of 26 agonist tapers (19%) produced it, all in people with earlier agonist-related impulse-control disorders. ³⁰¹

Giving the dose

Crushing

Extended-release carbidopa-levodopa tablets "should not be chewed or crushed"; a whole or half tablet is swallowed intact. ¹⁰² Parkinson's UK: never crush or split modified-release products (CR, MR, XL, PR); break other tablets only if scored; give tablets one at a time on a teaspoon with soft food or thickened fluid. ³⁰⁰

Protein and iron

The label says a high-protein diet may delay levodopa absorption and reduce uptake, and iron salts, including those in multivitamins, can chelate levodopa and carbidopa. ¹⁰² In 9 patients with fluctuations, meals cut peak plasma levodopa by 29% and delayed absorption by 34 minutes. ²⁴⁸

Self-administration

NICE: medicines at the appropriate times, "which in some cases may mean allowing self-medication", adjusted only by, or after discussion with, a Parkinson's specialist. ²⁴¹ In a Parkinson's UK survey, 48% of people admitted wanted to manage and take their own medication. ²⁹⁸

Formulations are not interchangeable

The Parkinson's Foundation notes that different strengths and formulations of the same drug are often not interchangeable, and that people may need to bring their own supply when a drug is not on the formulary. ²⁸⁴

Contraindicated-drug checker

Many of the drugs to avoid block dopamine receptors; the levodopa label, for example, warns that metoclopramide's dopamine-blocking properties may worsen disease control. ¹⁰² Others interact with an MAO-B inhibitor or with apomorphine. Pick a drug to see what each source says. The sources do not always agree, and where they differ, the checker shows both.

The person uses apomorphine

Sources disagree The Parkinson's Foundation lists ondansetron and the other 5HT3 antagonists in its "safe" column. The apomorphine (APOKYN) label contraindicates 5HT3 antagonists (ondansetron, granisetron, dolasetron, palonosetron, alosetron) because of "profound hypotension and loss of consciousness" when apomorphine was given with ondansetron. The conflict matters for people using apomorphine. ^101,284 Parkinson's UK says cyclizine and ondansetron can be used after surgery but may cause confusion and altered consciousness. ³⁰⁰

If psychosis needs a drug

NICE: do not offer olanzapine; consider quetiapine for people without cognitive impairment; offer clozapine if standard treatment fails, with registration with a patient monitoring service; both at lower doses than in other indications. Other antipsychotics (phenothiazines, butyrophenones) can worsen motor features. ²⁴¹

If nausea needs a drug

Parkinson's UK: consider domperidone (oral or rectal) if there are no contraindications, but avoid it in cardiac disease, where it slightly raises the risk of arrhythmia and sudden cardiac death. ³⁰⁰ The Parkinson's Foundation lists prochlorperazine, metoclopramide, promethazine and droperidol to avoid. ²⁸⁴

If confusion needs a drug

Parkinson's UK: screen with the 4AT, look for and treat causes such as infection, dehydration and constipation, and consider a benzodiazepine rather than an antipsychotic if one is needed. ³⁰⁰ The Parkinson's Foundation warns that benzodiazepines, muscle relaxants, bladder-control drugs and other sleep or pain drugs may cause confusion, hallucinations and falls. ²⁸⁴

How often it happens

Contraindicated dopamine blockers were given in 23% of 339 hospital encounters, and those patients stayed longer. ²¹⁸ In US veterans, contraindicated drugs were prescribed for 19 of 89 patients. ¹⁵⁴

Exam hookAvoid haloperidol, metoclopramide and prochlorperazine. ^284,300

Safety risks in numbers

Falls, aspiration, delirium, orthostatic hypotension and impulse-control disorders are the safety problems the sources return to most. Each panel uses its own units, so compare within a panel, not across.

Falls ¹¹ · delirium ¹²¹ · aspiration pneumonia ³⁸¹ · swallowing ¹⁶⁷ · orthostatic hypotension ³⁶⁰ · impulse-control disorders ⁶⁸

Falls

Across 22 prospective studies, 60.5% (range 35% to 90%) reported at least one fall and 39% recurrent falls; recurrent fallers averaged 20.8 falls a year. Associated factors: previous falls, freezing of gait, dopamine agonist use, higher levodopa dose, cognitive impairment and fear of falling. ¹¹

In an RCT of 231 people, home exercise for balance, strength and freezing did not reduce falls overall (IRR 0.73, 95% CI 0.45 to 1.17); falls fell in milder disease (IRR 0.31) and tended to rise in more severe disease (IRR 1.61, not significant). ⁵¹

Aspiration and swallowing

In a Korean national cohort, aspiration pneumonia occurred at 3.01 against 0.59 per 1,000 person-years (HR 4.21); after a first episode, mortality was 23.9% at 1 month and 65.2% at 1 year, similar to controls. ³⁸¹ Swallowing problems were reported by 35% when asked but found in 82% on testing. ¹⁶⁷ NICE offers speech and language therapy for swallowing or saliva problems, including expiratory muscle strength training. ²⁴¹

The Parkinson's Foundation calls aspiration pneumonia "the leading cause of death" in Parkinson's; that claim is unverified against cause-of-death data. ²⁸⁴ In the CamPaIGN cohort, pneumonia was the most common cause of death. ³⁷⁸

Delirium

Delirium (DSM-5) was diagnosed in 66.9% of 121 hospitalised people with Parkinson's, against 38.7% of 199 older controls. In Parkinson's it was linked to higher 12-month mortality (HR 3.3), institutionalisation (OR 10.7) and dementia (OR 6.1). ¹²¹ Parkinson's UK lists what to watch for in acute admissions: delirium, chest infection (especially aspiration pneumonia), urinary infection, postural hypotension and falls, constipation, and NMS-like syndrome. ³⁰⁰

Orthostatic hypotension

Pooled prevalence 30.1% (95% CI 22.9% to 38.4%), with large heterogeneity. ³⁶⁰ Parkinson's UK asks for blood pressure lying and sitting, then standing. ³⁰⁰ The measuring method and the 20/10 and 30/15 criteria are in the Assessment tab.

Impulse-control disorders

In 411 people with disease of 5 years or less, the 5-year cumulative incidence was 46.1%: 51.5% in people who had ever taken a dopamine agonist and 12.4% in those who never had; disorders gradually resolved after agonists were stopped. ⁶⁸ In 3,090 patients, 13.6% had one (17.1% on an agonist vs 6.9%). ³⁷¹ With a problematic disorder, NICE says to seek specialist advice and reduce any agonist gradually, watching for withdrawal. ²⁴¹

When doses slip

The Parkinson's Foundation lists the consequences of delayed medication as falls, skin breakdown, incontinence, eating difficulties, emotional distress and inaccurate assessment of discharge needs, and recommends mobilising as soon as it is medically safe, with physiotherapy and occupational therapy input. ²⁸⁴

Myths and what the sources say

The home diary

The Hauser diary records each half-hour as asleep, OFF, ON, ON with non-troublesome dyskinesia, or ON with troublesome dyskinesia. People generally count OFF time and troublesome dyskinesia as "bad time". ¹³⁶ Pick an example day.

Fictional example days. In 302 patients, reliability rose with more days (alpha 0.868 at 3 days, 0.946 at 6), but 76% of missing or duplicate entries came after day 3. ¹³⁶

What the guidelines say to teach

When treatment starts

NICE 1.3.8: give oral and written information on impulse-control disorders (higher risk with agonists), excessive sleepiness and sudden-onset sleep with agonists, and psychotic symptoms, and record that this was discussed. ²⁴¹ Adults on dopaminergic therapy are told about impulse-control disorder risk when they start and at least once a year. ²⁴²

Impulse-control signs

When an agonist starts, NICE 1.4.3 asks for information on the increased risk (including that affected people may hide it), the types of disorder, who to contact, and the possibility that the agonist will be reduced or stopped; 1.4.4 asks for it to be discussed at reviews, especially when therapy changes. ²⁴¹

Driving and sleep

People who drive tell the DVLA and their insurer at diagnosis (NICE 1.1.7). People with daytime sleepiness or sudden-onset sleep are advised not to drive and to tell the DVLA (1.5.1). ²⁴¹

Before a hospital stay

Write down the exact times doses are due so the home schedule can be followed; know that strengths and formulations are often not interchangeable; bring one's own supply if a drug is not on the formulary. ²⁸⁴

Standing up safely

Consensus non-drug measures for neurogenic orthostatic hypotension include about 2 L of water a day, about 500 mL drunk within 5 minutes (raising systolic pressure by about 30 mmHg for up to an hour), extra salt if appropriate, raising the head of the bed by 15 to 23 cm (not with pillows) and 30 to 40 mmHg compression garments. ¹²³

Constipation

The 2019 MDS review rates probiotics and prebiotic fibre "efficacious" and macrogol "likely efficacious", and says fibre and fluid measures should always be recommended. ³²⁹ How fast oral levodopa acts depends on protein intake, gastric emptying and constipation. ¹¹⁴

Moving and falls

NICE 1.7.2 and 1.7.3: consider early referral to a physiotherapist experienced in Parkinson's, and offer Parkinson's-specific physiotherapy for balance or motor problems. ²⁴¹ Previous falls, freezing and fear of falling are among the factors linked to recurrent falls. ¹¹

The Parkinson's disease nurse specialist

NICE says people with Parkinson's should have regular access to clinical monitoring and medicine adjustment, a continuing point of contact (including home visits when appropriate) and reliable information, "which may be provided by a Parkinson's disease nurse specialist". ²⁴¹ Quality statement 1: adults with Parkinson's have a point of contact with specialist services. ²⁴² Two randomised trials have tested the role.

Jarman 2002 ¹⁶² · Connor 2019 ⁶⁴

Mixed trial results

Better wellbeing and process, not motor outcomes

In 1,859 patients from 438 English practices over 2 years, community nurse specialists did not change mortality (HR 0.91, 95% CI 0.73 to 1.13), the stand-up test, the dot-in-square test, the PDQ-39 or EuroQol, but self-rated global health was better (difference −0.23, 95% CI −0.40 to −0.06). Costs rose by about £2,658 per person over 2 years, £266 less in the nurse group, not a significant difference. ¹⁶²

In 328 US veterans, nurse-led chronic care management raised adherence to 18 quality-of-care indicators to 0.77 against 0.58; of 8 patient-centred secondary outcomes, only a depression screen improved. ⁶⁴

In plain wordsSpecialist nurses made care more reliable and people felt better in themselves, but the trials did not show better movement or longer life.