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.
Robin
Best Practice in PSP
PSP Association (UK)
2012
Early stage:
May present via the fracture clinic, falls services, eye specialist or speech and language therapist. The early stage typically spans years 0-1.
- Ambulant.
- 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.
Mid stage:
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).
- Apathy.
- Dysphagia.
- High level of supervision required.
- Increasingly socially withdrawn.
Advanced stage:
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.
- Pain.
- Increasing periods of sleepiness.
- Incontinence.
- Severely withdrawn socially.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).