Parkinson's disease

Get help straight away if

These are uncommon, but they need same-day care — go to an emergency department, do not wait for an appointment.

• Medication stopped suddenly, or several doses missed, with marked stiffness, fever or confusionGo to an emergency department. Parkinson's medication should not be stopped abruptly.

Contact us promptly if

Not an emergency, but worth being seen sooner rather than waiting it out.

• New or repeated falls
• A clear worsening over days rather than monthsA sudden change usually has a cause on top of the Parkinson's — often an infection, dehydration or a new medication — and that cause is treatable.
• Seeing things that are not there, or new confusion
• Feeling faint or blacking out on standing up

What usually happens

Parkinson's is not only a tremor. Around a quarter of people never have a prominent one, and slowness, small handwriting, a quieter voice, reduced arm swing and loss of facial expression are often what family notice first.

The parts that are not about movement frequently matter more day to day — constipation, disturbed sleep, acting out dreams, loss of smell, low blood pressure on standing, low mood and anxiety. Several of these begin years before the movement symptoms, and all of them are treatable, so they are worth raising even though they sound unrelated.

Timing of medication matters more than in almost any other condition. Doses taken late lose their effect, and this becomes more noticeable as time goes on — which is why hospital admissions, where drug rounds run on the ward's schedule, are a common reason people deteriorate.

Never stop the medication suddenly. Abrupt withdrawal can cause a severe reaction, and this needs saying out loud to anyone admitting you to hospital.

Exercise is one of the few things shown to affect how the condition progresses rather than only how you feel. Vigorous, regular and continued is what the evidence supports.

At your appointment

Care shared with neurology, with a great deal managed here — constipation, blood pressure, sleep, mood, and the practical adjustments that come up between appointments.

We will ask about the non-movement symptoms specifically, because most people do not volunteer them.

We will check blood pressure sitting and standing, since a drop on standing is common, causes falls, and is treatable.

If you are admitted to hospital, we will make sure your medication times are documented, because that is where they most often go wrong.

Worth asking

• —What should I do if a dose is late, or if I am admitted to hospital?
• —Could my constipation, sleep or blood pressure be part of this?
• —What kind of exercise should I be doing?
• —What would be a reason to contact you sooner?