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

Living with Parkinson's

For the person living with Parkinson's and for the people beside them: what guidelines and trials say about exercise, therapy, falls, work, driving, pregnancy, hospital stays, caregiving and the end of life. In a survey across six countries, stage and medication explained only 17.3% of the variation in quality of life; depression was the strongest single predictor. ¹³³

Daily life, domain by domain

Figures from the trials and surveys named in the panel.

Guidelines and reviews

What the guidelines say

Trials and studies

What the research found

Freezing of gait and cueing

In freezing of gait the feet seem glued to the floor, often after steps grow shorter and faster. External cues, a rhythm to step to or lines to step over, are used to get walking going again; the RESCUE trial tested home training with rhythmic cues. ²⁴³ Choose a cue and play.

Cue

Time

Schematic: stride lengths and timing are illustrative, not measurements. The trial evidence is for home-based rhythmic cueing training.

What drives caregiver strain

Studies asked what makes caring harder. Pick a study to see which factors it linked to caregiver burden, or, in the third, to moving into a nursing home.

Study

Links show associations reported in each study, not proven causes.

Palliative care: what the trial found

Palliative care is care focused on quality of life and symptoms, alongside usual treatment, at any stage. One randomised trial tested an outpatient team approach for people with Parkinson's and related disorders. ¹⁷⁴

Time point

Effect drawn with its 95% confidence interval; the trial reported no effect size for caregiver burden here, only that it did not differ (P = .06).

Planning ahead and the end of life

Guideline

Talking about the future

NICE recommends offering discussions about prognosis and advance care planning, including advance decisions to refuse treatment, do-not-resuscitate decisions and lasting power of attorney, and considering referral to palliative care at any stage. ²⁴¹

Consensus

Palliative care in neurology

A European consensus for progressive neurological disease recommends early integration of palliative care, a multidisciplinary team, symptom management, end-of-life care and carer support, mostly at evidence level C; symptom management is level B. ²⁵⁶

Cohort

How people die with Parkinson's

In an incident cohort, 55% had died by 10 years. Death certificates listed Parkinson's as a substantial contributor in only 20%, and pneumonia was the commonest cause of death. ³⁷⁸ Swallowing problems are under-reported: 35% when asked, 82% on testing. ¹⁶⁷

Cohort

Twenty years on

In the Sydney cohort, 74% had died by 20 years. Among survivors, 83% had dementia, 87% had falls and 48% lived in nursing homes; only one person lived independently. ¹⁴² See Stages and symptoms and Beyond movement.

Survey

Non-motor symptoms weigh more

In 411 patients the Non-Motor Symptoms Scale tracked quality of life more closely than the motor score (correlation 0.70 against 0.58), and was its best predictor. ²¹⁵ In 1,072 patients, 98.6% reported at least one non-motor symptom. ²⁵

In hospital

Medicines on time

Parkinson's medicines should not be stopped abruptly, because of the risk of acute akinesia or neuroleptic malignant syndrome, and should be given at the right times in hospital, which may mean allowing self-medication. ²⁴¹ See Nursing care.