What are the 4 Stages for PSP?

What are the 4 Stages for PSP?

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:

  1. 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.

  2. 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.

  3. 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.

  4. 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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122 comments

My friend seems to be at stage 3 and rapidly moving onto the next. At what stage do you ger the palliative team involved? She doesn’t want to live and feels a burden on her family. We are uk based and she was diagnosed about 2 years ago so the deterioration has been rapid.
Will a pain team come in to fo an initial assessment. Although she doesn’t have severe pain at the moment, she knows it will come and is a big fear for her. She does have ongoing pain from her numerous fractures that she’s haf.
She has falls neatly every day even though she has someone constantly around her. She still tries to do things she isn’t able to!
I’ve got do many questions but it seems there are no straight answers. I will b there to support right till the end but just want to know I’m doing all I can for her and her family. X

Emma

My mom was diagnosed with psp officially early this summer. She started falling about 2.5 years ago, but she was on opiotes from her cancer. She has since been cancer free and we have detoxed her. And has been clean for a year. Now that she’s been clean neurologist was finally able to get to the bottom of the balance problem. Doctor looked at her face and eyes one time and immediately knew what was wrong. After imaging it was confirmed. Fast forward 2.5 years from her first fall, and I believe she’s already in the advanced stages. She needs 24/7 care. Speech is so slow barely able to make a phone call because no one understands her. Eyes blinking a lot slower and because of that, it’s burning her eyes. So we use eye drops. Eye movement is extremely slow. She chokes on fluids all the time. She has recently vomited a few times and thank god we were there to see otherwise she would have aspirated as not being able to move herself in an upward position. She cannot stand, walk, sit down, use the bathroom unassisted. She has been gait freezing for the last few months where she just gets stuck and her legs can’t move. She is always tired, always restless, she’s up all night, constantly needing to use the bathroom. Recently has been wetting her diaper and can’t make it to the toilet in time. She still eats and stuff so that’s good. Her cognitive reasoning has gone out the window. Her MRI did show brain loss in her midline. It’s a very very sad disease. My mom was a CNA for years and years and even taught a CNA class. This all came out of nowhere. Unfortunately this is so rare and there’s no help for people who get this. No meds. No nothing. My mom just turned 66. I pray for anyone who has this and their families as well. My mom needs 24:7 care. And we all do it. All night, all day.

Jamie williams

My 85 year old dad has PSP. Wondering if anyone has any tips on how to manage loss of eye sight? Other than Prism glasses has anyone found anything else to help with vision improvement?

Lina J

My husband is in a care facility and in the last stages of PSP. Started where he was falling all the time. Didn’t want to meet up with friends . Choking on his food. We had been to neurologist they couldn’t tell me what was up with him . Thought it was dementia. Then he started to fall all the time ending in hospital. we’re he was diagnosed with psp. Told that he needed to go into care where he has been for nearly a year and is in the last stages . It has progressed so quickly from stumbling on one of our walks four years ago to this . He was a healthy , ate well , funny man it’s very hard as no one knows anything about this illness. What made the specialist diagnosis him was his eye movement. I will miss him

Diana haselden

My husband band has maybe 8 was left. Due to a bad heart, bad back and Drn that had cancer he was diagnosed with progressive three years ago.

He has choked. Gingerale really helps with his swallowing. Delaying the need for feeding tube.
Amnytriptoline for restless legs, helps with early forms of spasms in legs. 100mg at night
He started with seizures four months ago. I took a video. The first was 45 minutes. Keplax for epilepsy 250mg twice daily . He is not aware when he has them. Tonight he started with shivering and cramping at the same time. He doesn’t have long. However, his mind is still strong.

Ruth-Anne White

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