Progressive supranuclear palsy (PSP)
Progressive supranuclear palsy is a rare condition in which nerve cells gradually die in the brainstem and in the deep structures of the brain.
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Medicines commonly prescribed for Progressive supranuclear palsy (PSP)
For informational purposes only. Always consult a doctor before using any medicine.
Dosage form: TABLET, 20 mgActive substance: memantineManufacturer: Krka D.D. Novo MestoPrescription requiredDosage form: TABLET, 10 mgActive substance: memantineManufacturer: Tecnimede España Industria Farmaceutica S.A.Prescription requiredDosage form: TABLET, 20 mgActive substance: memantineManufacturer: Mabo Farma S.A.Prescription required
Progressive supranuclear palsy is a rare condition in which nerve cells gradually die in the brainstem and in the deep structures of the brain. It usually begins after the age of sixty, and for the first year or two it resembles Parkinson's disease so closely that Parkinson's is the diagnosis most people are given first. The differences are real and visible once you know where to look, and a great deal follows from them — not least how seriously to take falls, which in PSP start early and cause more injuries than anything else about the illness. Reports often use the abbreviation PSP, and it means the same thing.
What sets PSP apart from Parkinson's disease
Four features separate the two diagnoses more reliably than anything else.
- Falls in the first year, usually backwards. Balance goes suddenly on level ground and the person is down before they can grab anything. In Parkinson's disease instability arrives late, generally after five years or more; repeated early falls argue strongly against it.
- The gaze stops going down. At first the eyes are simply slower to move up and down between objects; later, looking downwards becomes steadily more restricted. The person misses the step, misses the plate with the spoon, loses the line when reading, and turns the head instead of the eyes.
- Swallowing and speech suffer early. Choking on food and a quiet, slurred voice appear within the first few years. In Parkinson's disease those belong to the advanced stages.
- Levodopa barely helps. In Parkinson's disease it produces a clear and lasting improvement. In PSP the effect is weak and short-lived, a year or two, and in some people there is none at all.
Smaller details fill in the picture: infrequent blinking and a permanently startled expression, a neck held straight or tipped back rather than the stooped posture, no tremor at rest, early apathy or, conversely, a loss of restraint. No single feature makes the diagnosis — the neurologist assembles the whole picture.
What is happening in the brain
A protein called tau builds up inside nerve cells. Everyone has it and it is normally renewed continuously, but in PSP that renewal fails and tau clumps into insoluble deposits inside the cell. Cells carrying the deposits die. Most of them lie in the brainstem, where eye movement and balance are controlled, and in the deep nuclei and frontal lobes — hence the stiffness, the slowness and the changes in character.
Where the deposits are heaviest decides the face the illness wears. The classic form starts with falls and eye problems. Another form is almost indistinguishable from Parkinson's for years, responds to levodopa and progresses more gently. There is a form dominated by speech difficulty and one with freezing of gait. That is why two people with the same diagnosis may describe quite different problems.
Why tau starts behaving badly is still unknown. Genetic variants that raise the risk have been found, but the condition is almost never inherited: for the children and siblings of someone with PSP the risk stays close to that of anybody else.
How it usually starts
The onset is blurred, and two or three years commonly pass before the diagnosis is made. What gets noticed first is not the change in the eyes but the unsteadiness.
- sudden loss of balance, tripping and falling on level ground;
- stiffness, particularly in the neck, and slowness of movement;
- a quiet, flat, indistinct voice;
- tiredness that rest does not shift;
- apathy and loss of interest in everything, or the opposite — irritability and impulsive decisions;
- difficulty with anything that needs several steps planned in sequence;
- blurred or double vision, sore eyes from infrequent blinking, discomfort in bright light;
- difficulty looking down without tilting the head.
Behaviour deserves a separate word. Families describe it as "he has become indifferent" or "she has stopped thinking about consequences" and put it down to age or depression. It is part of the illness rather than the personality, and the doctor needs to hear about it.
How it changes over time
The pace differs enormously between people, but the direction is the same. Walking becomes less and less reliable and at some point a wheelchair is needed. The restriction of downward gaze deepens and gets in the way of eating, reading and seeing the floor. The eyelids begin to behave independently: they droop, they twitch, and sometimes they will not open on command even though the muscle is intact.
Later come swallowing difficulties, first with liquids and then with solid food. Speech slows until only those closest can follow it. Thinking becomes slower and attention and memory suffer, although not everyone develops severe dementia. Constipation, getting up at night to pass urine, difficulty passing it, neck and back pain from constant muscle tension, and broken sleep are all common.
The outlook is hard to talk about, but it should be said honestly: the illness shortens life, the average is counted in six to nine years from the first symptoms, and the end most often comes through pneumonia caused by food entering the airway. That is exactly why swallowing and falls are taken seriously and taken early — they are the part that can genuinely be influenced.
Falls: the main source of injury
Broken hips, head injuries, a broken face — in PSP almost all of it comes from falls, and they happen more often than in other conditions with similar symptoms. Three causes come together and each one worsens the others: balance itself is impaired; the gaze does not go down, so the obstacle underfoot goes unseen; and the frontal lobes stop applying the brakes, so the person stands up and sets off without working out whether they will stay upright.
What genuinely lowers the risk:
- balance and safe standing-up work with a physiotherapist, started early rather than once the falls have become a run;
- a heavy, stable four-wheeled walking frame: a stick or a light frame does little for someone who falls backwards, and can get in the way;
- clearing away anything that catches the feet — loose rugs, cables, cluttered corridors — plus good light in the hallway and a lamp beside the bed;
- grab rails in the bathroom and by the toilet, a shower stool, non-slip shoes with a fixed heel;
- going through every medicine with a doctor for the ones causing drowsiness or a drop in blood pressure on standing;
- checking vitamin D and treating osteoporosis if it is there: the falls will not stop, but there will be fewer fractures.
When help is needed urgently
Call an ambulance (112 in Spain, Italy, Portugal, Poland and Ukraine) if:
- the person is choking and cannot speak, cough or draw breath;
- after choking on food they become breathless, blue around the lips, or confused;
- after a fall they have lost consciousness, are vomiting or fitting, cannot get up, or complain of hip pain;
- the deterioration came on suddenly, over minutes: the face has dropped on one side, an arm has gone, speech has been lost. In PSP everything changes gradually; an abrupt change means something else, most often a stroke.
See a doctor the same day if:
- a fever, a new cough or a change in breathing appears, especially in the days after an episode of choking on food: that is how aspiration pneumonia begins;
- the person has stopped eating and drinking, is passing noticeably less urine, and the tongue and skin are dry;
- they cannot pass urine although the bladder is full;
- after a bang on the head, over the following days and weeks the headache, drowsiness or confusion increases, or weakness appears down one side. In older people, and especially on blood-thinning medication, blood collects slowly under the coverings of the brain and the deterioration arrives late.
How the diagnosis is confirmed
There is no test or scan that says "this is PSP". The neurologist makes the diagnosis from the whole picture: how it began, in what order the problems appeared, and what the examination shows — above all eye movement, posture and balance. That is why the first appointment has to be face to face, and it helps if someone close describes the falls and the changes in behaviour from the outside.
An MRI scan is done mainly to rule other things out: a tumour, the aftermath of strokes, fluid collecting in the ventricles. In time it also shows the thinning of the midbrain typical of PSP, whose outline on the side view is likened to a hummingbird. The sign supports the diagnosis, but early on it may be absent.
A trial of levodopa is common — at an adequate dose and for enough weeks. It is not a wasted step: a clear and sustained improvement argues for Parkinson's, a poor and brief response for PSP. Neuropsychological testing of memory, planning and language comprehension fills in the rest. The diagnosis may be refined over time, and that is normal: it is built on how the illness behaves next.
What helps in living with it
There is as yet no treatment that halts PSP. But help started early changes both safety and daily life considerably, and it works as a team.
- Medicines. Levodopa is tried in everyone: in some people it eases the stiffness for a while. Antidepressants help with the depression and apathy that are common here. Treatments for constipation, insomnia and bladder problems are chosen separately. Names and doses do not belong on a page like this: the regimen is the doctor's to set.
- Rehabilitation. Balance work, stretches for the neck and back, choosing a walking frame and footwear, and going through the home for dangerous spots.
- Speech and language therapy. Techniques that keep speech intelligible, communication aids for later, and above all assessment of swallowing with a safe consistency chosen for food and drink. The referral belongs at the first choking episodes, not when swallowing has already become impossible.
- Eating. Thickeners for drinks, altered food textures, an unhurried pace and sitting upright. In severe swallowing difficulty, feeding through a tube into the stomach is discussed — better talked through in advance than in hospital with a pneumonia under way.
- Eyes. Artificial tears for dryness, dark glasses for light sensitivity, botulinum toxin injections for eyelid spasm, and prism glasses, which for some people make looking down easier.
- Palliative care. Not only for the last weeks: its job is to relieve pain and distressing symptoms and to support the person and the family at any stage.
Online consultation
An online appointment does not replace a face-to-face neurological examination: eye movements and balance have to be watched in the room. It does deal well with everything else, and in this illness there is a great deal of everything else.
It is worth booking one to go over doubts about a diagnosis already made, when Parkinson's treatment is not working; to work out which specialist to see next and with what; to review the medicines, some of which add to drowsiness and falls; and to understand what to do about swallowing and about safety at home. Often it is not the ill person who joins the call but the person caring for them, which is both normal and useful.
Have ready a full list of medicines with doses, any letters and reports you hold, and a short timeline: when it began, what came first, when the first fall happened. Record a video of the person getting up from a chair and walking down the hallway — a clip like that shows a great deal.
This material is for information only and does not replace medical advice.
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