Parkinson's disease

Dopamine-producing cells dying, affecting movement, mood and much else. Medication timing is not a detail here, it is the treatment.

What it is

Around 153,000 people in the UK have Parkinson's. Cells in the brain that produce dopamine gradually die, and by the time symptoms appear a large proportion have already gone.

The visible symptoms are movement: tremor, stiffness, slowness. The ones that affect life most are frequently the invisible ones: constipation, sleep disturbance, pain, low mood, anxiety, and cognitive change.

There is one clinical fact worth putting above all others. Parkinson's medication must be given at the exact prescribed times, not at a ward's drug round times. Doses given even an hour late cause a person to freeze, become unable to move, speak or swallow, and sometimes not to recover that ground. This is what the Get It On Time campaign exists for, and hospitals still get it wrong.

Signs you might notice

Tremor at rest, classically in one hand, that reduces on movement.

Slowness of movement, and difficulty starting one. Small handwriting.

Rigidity, a stooped posture, reduced arm swing, a shuffling gait.

A reduced sense of smell, sometimes years earlier. Acting out dreams during sleep, also early.

Quiet, monotone speech. A reduced facial expression that is read as depression or disinterest.

Constipation, which is very common and often precedes the movement symptoms.

How it can affect day-to-day life

Freezing is the daily hazard: feet stuck to the floor, usually in doorways or turning, and it causes falls.

The masked face costs relationships. People assume disinterest or unhappiness in someone who feels neither.

On-off fluctuations mean function varies within the day, so a person genuinely can walk at eleven and not at three, and that gets misread as inconsistency.

Around half of people develop dementia at some stage, and hallucinations may be a side effect of the medication rather than the disease, which needs specialist judgement rather than an antipsychotic.

Supporting someone well

Get medication timing exactly right, every time, including in hospital. Take the person's own supply in, and challenge any ward that will not administer at the prescribed times. This is the single most important thing in this entry.

Never give haloperidol or similar antipsychotics without specialist advice. They block dopamine and can cause severe deterioration. Same warning as Lewy body dementia.

Use cues for freezing: a laser line, counting, stepping over an imaginary line, a rhythm. Physical prompts work where instructions do not.

Refer to physiotherapy and speech therapy early. LSVT programmes for voice and movement have good evidence and are usually offered late.

Treat constipation actively, because it also affects how well medication is absorbed.

Allow time. Rushing somebody with Parkinson's makes them slower.

Fiducia Guardian holds the medicines with their exact times and the whole care team, which is precisely the information a hospital does not have at midnight.

Where to get help

Ask for a Parkinson's specialist nurse. They are the most useful contact and not everybody has one.

Parkinson's UK run a free helpline on 0808 800 0303 and publish the Get It On Time resources for hospital admissions.

Ask about referral to physiotherapy, occupational therapy and speech and language therapy from diagnosis, not from crisis.