I think having a PSP disease roadmap, even if it is rough, can be useful.
The idea and the bulk of the information that I show below I have found in the documents of the association "CurePSP".
My proposal is that the caregivers of the "PSP chat" of HealthUnlocked can contribute to improve this first version.
Note.- All PSP patients seem to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.
Hug and thank you.
Stages of PSP and standards of care_v1_2018-01-07
(Mainly based on CurePSP information)
Early Stage (Including diagnosis)
- Walking but falls occasionally.
- Difficulty reading due to gaze palsy.
- Mild vocal changes such as quietening of voice or difficulty in vocalization.
- Changes in mood.
- Reduced social interaction.
- Walking with aids.
- Limited eye movements making eating and walking more difficult
- High risk of falls.
- Speech difficult to understand.
- Change in handwriting to very small and messy.
- More impulsive behaviours.
- Marked apathy.
- At risk of choking.
- Requires a high level of supervision.
- Lack of response to PD medications.
- Vertical Gaze Palsy.
- Backwards Falls
(years 3 – 6)
- Highly reduced mobility
- Severe muscle stiffness
- Requiring a wheelchair.
- Severe communication difficulties including lack of expression.
- High risk of aspiration and pneumonia.
- Pain and periods of sleeplessness
- Functional incontinence.
- Severe social withdrawal.
End of life Care
(last 6-8 weeks)
-Severe impairments and disabilities.
-Rapid and marked deterioration in condition.
-This stage is usually triggered when a decisión not to treat is made, in accordance with the individual´s wishes.
-“Not to treat” could include inability to eat and drink in absence or refusal of a PEG or RIG, infections that would require hospitalisation, etc.. Decisions made in light of advance directives, preferred priorities of care and in best interest.