Progressive supranuclear palsy (PSP): falls, eye movements and swallowing

The NHS describes PSP as a rare neurological condition that can cause problems with balance, movement, vision, speech and swallowing, caused by increasing numbers of brain cells becoming damaged. It explains that tau, a protein that occurs naturally in the brain, is not broken down properly and forms harmful clumps in brain cells; the amount and location vary between people, so the range of symptoms is wide.

PSPA, the UK charity for PSP and corticobasal degeneration, says PSP is a very individual condition and every case is unique; not all symptoms will be relevant to every person. The charity says it works for the 10,000 people living with PSP or corticobasal degeneration in the UK.

The NHS lists problems with balance and mobility including frequent falls, behaviour changes such as irritability or apathy, muscle stiffness, inability to control eye and eyelid movement (difficulty focusing on objects or looking up or down), slow, quiet or slurred speech, difficulty swallowing, and slowness of thought with some memory problems. PSPA describes frequent falls often backwards, very slow movements and stiff muscles.

The balance problems and falls are the reason PSP matters in a geriatric setting: an older person with repeated unexplained falls, especially backwards, and difficulty looking down on stairs or at the plate, may be assessed for PSP as well as for more common causes such as medicines, low blood pressure or Parkinson's disease. Symptoms usually get worse over time, and the NHS says at first they can resemble other conditions, making early diagnosis hard.

PSPA says visual problems cannot be corrected by glasses and include double vision, tunnel vision, blurred or misty vision, slow jerky eye movements and difficulty looking down. It describes three main types of speech problem: a strained or harsh voice with slow, slurred speech; speech becoming so quiet it is hard to hear, and very fast, sometimes croaky or breathy; and slurred speech with struggles on longer words. The NHS says botulinum toxin injections or special glasses may help with eye problems, and speech and language therapy helps speech and swallowing.

Practical consequences include difficulty reading, trips and falls from not seeing steps, and frustration at being misunderstood; clear lighting, face-to-face conversation and extra time all help families.

PSPA says eating, drinking and swallowing difficulties are common and can occur fairly soon after diagnosis. Coughing when eating or drinking indicates food or drink has gone down the wrong way into the airway, and if this happens regularly it can lead to chest infections or pneumonia. It explains that a reduced swallow reflex can cause saliva to build up in the mouth, while some medicines can dry the mouth.

The NHS says feeding tubes may be used to manage dysphagia and avoid malnutrition or dehydration. Our guide on aspiration pneumonia explains the warning signs of swallowing problems and the role of a speech and language therapist, who can assess swallowing and advise on food and drink consistency.

The NHS says the diagnosis is based on the pattern of symptoms, with doctors trying to rule out other conditions such as Parkinson's disease; because there are so many possible symptoms it can take a while to reach a definite diagnosis. A brain scan may be used to look for other causes, along with tests of memory, concentration and ability to understand language. The diagnosis must be made or confirmed by a consultant with expertise in PSP, usually a neurologist.

PSPA notes that fatigue is common in PSP, an overwhelming feeling of tiredness, lack of energy and exhaustion, and that pain can be a direct result of PSP or other conditions. These symptoms are worth mentioning at appointments.

The NHS says there is currently no cure for PSP and no treatment that can stop its progression, though research is continuing. Treatment focuses on relieving symptoms so the person has the best possible quality of life, delivered by a team of health and social care professionals and tailored to the individual. It may include medication to improve stiffness and other symptoms, physiotherapy for movement and balance, speech and language therapy, occupational therapy for daily activities, botulinum toxin injections or special glasses for eye problems, and feeding tubes if needed.

For older adults, home safety assessment, walking aids chosen by a physiotherapist, bed and chair height, and a clear plan for what to do after a fall are practical priorities.

The NHS says good care and assistance can help someone with PSP to be more independent and enjoy a better quality of life, but there will come a point when the person is at risk of serious complications, so it is a good idea to talk to the care team about what the person would like to happen at that stage. It also says clinical teams pass information about people with PSP to the National Congenital Anomaly and Rare Disease Registration Service to help scientists, and that you can opt out of the register at any time.

PSPA operates a helpline, support networks, a carers' wellbeing hub, befriending and information on living with PSP. Families and carers are often under considerable strain, and asking for a carer's assessment from social services is a reasonable step.