Last month, a terrific article was published on progressive supranuclear palsy (PSP) in a nursing journal. The article shares a list of symptoms in the four stages of PSP from the PSP Association, based in the UK. The four stages are:
- Early stage
- Mid stage
- Advanced stage
- End of life stage
The symptoms are copied below. I’m sure you can overlook the British spellings.
Best Practice in PSP
PSP Association (UK)
May present via the fracture clinic, falls services, eye specialist or speech and language therapist. The early stage typically spans years 0-1.
- Occasional falls.
- Unsteadiness and poor balance.
- Possible visual problems affecting ability to read.
- Voice changes, for example reduced volume.
- Mood changes.
- Reduced socialising.
- Changes in mood and behaviour, including apathy and anxiety.
Many people reach this stage before diagnosis. Consider discussing advance care planning and advance decisions to refuse treatment. Consider referral to palliative care services. The mid stage typically spans years 2-3.
- Ambulant with aids.
- High risk of falls and injury.
- Visual problems affecting self-care abilities, for example eating and walking as unable to move eyes to see.
- Speech increasingly unintelligible.
- Inability to initiate conversation.
- Impulsivity (risky or impulsive behaviour).
- High level of supervision required.
- Increasingly socially withdrawn.
Patients should be on GP palliative care register and have access to specialist palliative care.
The advanced stage typically spans years 3-6.
- Mobility significantly compromised, probably chair bound requiring a wheelchair for mobility.
- Significant visual problems.
- Significant muscle stiffness.
- Significant communication problems, but probably still able to understand.
- High risk of aspiration and pneumonia as a result of dysphagia.
- Increasing periods of sleepiness.
- Severely withdrawn socially.
- Dependent for most or all aspects of care.
End of life stage:
This stage is difficult to detect, but may be indicated by reduced levels of consciousness, inability to eat or drink, acute infection, a fall or major fracture, and rapid and significant weight loss. The end of life stage typically spans 6-8 weeks.
- Severe impairments and disabilities.
- Rapid and marked deterioration in condition.
- Decisions with regard to treatment interventions may be required, considering an individual’s previously expressed wishes (advance decisions to refuse treatment).