# Symptoms and phases of progressive supranuclear palsy
Progressive supranuclear palsy (PSP) progresses in phases with different symptoms. The disease is developing slowly, but gradually the problems are increasing. Below, we describe how the symptoms usually occur and what they mean in daily life.
Early phase
In the early phase, symptoms are often subtle and are easily overlooked or attributed to normal aging. However, the problems are growing steadily.
**Symptoms:**
- Unexpected falls or trips without an obvious cause, especially walking backwards
- Stiffness in the neck and back area, especially in the neck
- Slowing down of movements (bradykinesia)
- Difficulty focusing the eyes down (downgazeparesis), especially annoying when walking down stairs or seeing feet
- Mild loss of balance
- Change in gait (way of walking): short steps, feet wide apart
- Fatigue
- Subtle speech difficulties: voice becomes softer or monotonous
- Memory and concentration problems
- Mood changes, sometimes apathy (passivity) or resignation
In daily life, these symptoms can mean that someone walks more carefully, falls more often, and becomes more aware of their own movements. Driving can become more difficult due to eye problems. Social contacts may change because someone feels less energetic and withdraws.
**Duration and survival in this phase: **
The early phase lasts an average of 1 to 2 years. This varies widely between patients. There are no reliable data on survival specifically in this phase alone; the overall median survival after diagnosis is approximately 5 to 7 years (Schumacher *et al.*, 2020), but this is an average across all phases and individuals vary widely.
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Middle phase
In this phase, the symptoms become clearer and have more impact on the daily routine.
**Symptoms:**
- More severe imbalance and more frequent falls (sometimes forward or backward)
- Clearer eye movement difficulties: upgazeparesis (looking up) and lateral movements become stiffer; downgazeparesis worsens
- Rigidity in muscles is increasing, especially in the neck, spine and legs
- Delayed motor responses
- Clearer speech problems: voice becomes raw, less understandable, can sometimes come out early or difficult
- Sleep problems
- Increased mood problems: depression, anxiety, emotional outbursts for no apparent reason
- Cognitive decline: slower thinking, less focused action, difficulty with multiple tasks at the same time (executive functions)
- Stiffening facial expression
- Possible slowness in chewing and swallowing (dysphagia)
In daily life, this means that someone needs more and more help with walking, visiting the toilet and bathroom. Driving cars is usually no longer safe. It's getting harder to take care of yourself, and communicating takes more effort. Falls are a higher risk, with a risk of injury.
**Duration and survival in this phase: **
The middle phase usually lasts 2 to 3 years. Here, too, exact median survival rates for this phase alone are not reliably available; the overall median disease progression from diagnosis to severe disability has been estimated at approximately 5 to 10 years (Armstrong *et al.*, 2020), but varies widely between individuals.
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Late stage
In the late phase, symptoms have a major effect on independence and safety.
**Symptoms:**
- Severe loss of balance; frequent falls
- Eye movements are severely restricted or almost impossible in certain directions
- Strong muscle rigidity, especially in the neck and torso, which makes movement very difficult
- Significant slowness (bradykinesia)
- More severe dysphagia (difficulty swallowing): risk of choking, feeding through a tube may be necessary
- Speech is difficult to understand or almost impossible
- Significant cognitive decline: dementia with loss of memory, orientation and daily functioning
- Incontinence (involuntary urination or defecation)
- Insomnia or nightmares
- Persistent apathy or emotional changes
- Hallucinations may occur (seeing or hearing things that are not there)
- Possible neuroleptic sensitivity: certain medications for psychotic symptoms can cause severe side effects
In daily life, a person in this phase can no longer be alone. Full care is needed for personal hygiene, nutrition and mobility. Communication is very limited. Risk of falling is high and preventive measures are crucial. Hospital admissions become more frequent.
**Duration and survival in this phase: **
The late phase lasts on average 2 to 3 years until death. Median survival after diagnosis is approximately 5 to 7 years (Schumacher *et al.*, 2020), but some patients live shorter, others longer. The ultimate cause of death is often a complication such as severe pneumonia (due to aspiration), severe malnutrition, or more extensive neurological disease processes. However, it varies greatly from person to person.
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Special symptom clusters
Some symptoms can occur in different ways in different phases:
**Motor symptoms:**
The gait gradually changes from a normal, smooth gait to stiff, slow and short; many patients walk as a "pushed walker" (pushers). This begins early in the disease and worsens.
**Eye and gaze problems (supranuclear gaze palsy):**
This is one of the key features. First, downward gaze may become limited (difficulty looking down), then upward gaze (looking up). These symptoms develop gradually.
**Cognitive and behavioral changes:**
These develop along with motor symptoms, not always in the same order. Some people have mainly behavioral changes first (apathy, withdrawn), others have motor problems first.
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When to contact your doctor
Contact your doctor or call your general practitioner/specialist if:
- You fall increasingly often or feel unsafe in daily life
- You have sudden severe headaches
- You are swallowing and aspirating (food or drink goes the wrong way) — this is an emergency
- You have sudden strong changes in voice or can barely speak anymore
- You continue to eat or drink poorly for days on end
- You have fever combined with greatly increased muscle rigidity (may be a sign of a serious complication)
- You have become confused, sleepy or unusually passive
- You have strong emotional outbursts or behavioral changes that are difficult to understand
A slow increase in stiffness, falling or speech problems is part of the disease and deserves attention at an appointment, but is not always an emergency situation.
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_This information never replaces a doctor's judgment. Always discuss your situation with your own healthcare provider._