It has been said there are four stages, but because there is so little research they are a guideline only.
Many people experience some stage four symptoms at stage one or overlap stages. Some never experience certain symptoms and then others can experience ones not listed. The impact it has on each individual varies dramatically.
Progressive Supranuclear Palsy (PSP) is a rare neurodegenerative disorder that affects movement, balance, vision, speech, and cognitive function. The disease progresses slowly over time, and its symptoms typically become more severe as the disease advances. While not everyone with PSP experiences the same symptoms or progression, there are generally four recognized stages of PSP:
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Early stage: In the early stage of PSP, individuals may experience symptoms such as difficulty with balance and coordination, changes in gait, and problems with eye movement. These symptoms may be subtle and easily dismissed as normal aging or a different condition.
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Mid-stage: In the mid-stage of PSP, symptoms become more pronounced and can include falls, speech and swallowing difficulties, and cognitive impairment such as problems with memory and executive function. Depression and apathy are also common.
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Advanced stage: In the advanced stage of PSP, individuals may become wheelchair-bound and require assistance with daily activities such as eating, dressing, and bathing. Symptoms such as rigidity, spasticity, and involuntary movements become more severe.
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End-of-life stage: In the end-of-life stage of PSP, individuals may be bedridden and require around-the-clock care. They may have difficulty swallowing, become more susceptible to infections, and experience other complications related to the progression of the disease.
It's important to note that not everyone with PSP will experience all of these stages, and the progression of the disease can vary widely from person to person. Additionally, some individuals may experience rapid progression, while others may experience a slower course of the disease.
Here is the four stages below in more detail;
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 socializing.
> Changes in mood and behavior, 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 behavior).
> 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).
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128 comments
My dad was diagnosed with PSP in February 2023 but for years we new something just wasnt right. He became angry, then dizzy which we all thought was vertigo then he found it difficult to walk and look after himself.
His brother passed away wth PSP some years ago and for years the drs said it doesnt run in the family.
Dad is now in permanent care and can no longer feed himself.
PSP is a horrible disease. We will look after you dad until the day it sets you free. xxxx
My husband was diagnosised with Parkinson’s 7 years ago and Psp 4 years ago he can no longer walk or feed himself he must wear a diaper I take care of everything.He wakes me up all night long to turn him or change him.I don’t know how much longer I can do this.
I have psp and I don’t like one bit. I came to this website to find out about my eyes . I think I should be happy to be here. This is a terrible disease and I would not wish it on my worst enemy
My mother died at age 84 from the effects of PSP. Like others, for several years the doctor treated her for Parkinson’s and COPD. She had no tremors, but had falls, masked face, couldn’t walk, etc. At the end, she was still very aware, but could not speak, could not blink, and breathing was difficult. She lost the ability to feed herself, as well. She choked on everything including sips on f water. It was very hard to see a strong, independent woman just being locked inside her own body. God finally took her home in October of 2015.
My husband had PSP. When he had difficulty swallowing, his doctor perscribed Donepezil 10 mg. This medication was like a light turning on for his brain and his swallowing improved for several years. When his swallowing became worse, I read a PSP article on the NIH website stating that patients responded well to up to 20 mg of Donepezil. After bringing this to his doctors attention, she increased his dosage to 20 mg. Again, my husband responded like there was a light turning on in his brain and his speech therapist was amazed at the improvement in his swallowing.