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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107 comments

If any of you have a loved one with PSP and it is still early stage, try to contact Dr.Wills at Boston – Mass General. She was the one who finally diagnosed my father when he was about 78 – he is 80 now and not doing well. However Dr Wills has clinical trials that your loved one may be able to participate in if they are not too far advanced. If they are far advanced, I still recommend Dr. Wills, she was absolutely wonderful and compassionate with my dad and so knowledgeable about PSP.

Mary Bunn

My wife was diagnosed 2 years ago with PSP and is currently in stage 3. I took early retirement to become her full time caregiver and I can tell you that this is the most difficult thing I’ve ever had to do. I have homecare hospice that helps along with family. She was diagnosed at Cleveland Clinic, and I would advise to go somewhere that has dealt with this disease.

Donald Rush

my wife has psp she was finally diagnosed 2 years ago not sure what stage she is in . she is wheel chair bound,severe speech problems,no balance,very irritable,confused,and very little patience.I have a caregiver for 5 hrs a day 5 days a week,the rest is on me.Can anyone help me understand where we are at with this. And what is ahead

thomas k mullis

My dad is 80 y/o and he is at entering his last stage of PSP when he was diagnosed in 2016/2017.
Drifting in and out of sleep.
He lost alot of weigh and is very weak now. He can’t communicate and swallow well. When he is slightly alert, we will try to test memory or ask him how he is feeling. We can only try very hard to wait for his reply through lip reading or right hand signal of OK or not OK. I asked him what was he thinking last week, he said “fear” with a sudden burst of tears. It breaks my heart to see him going through this. Nevertheless, as caregiver we must be strong to be with them. I am thankful that have a good helper to take care of him. We have home nursing support which ease us from admitting him in and out of hospital.

Audrey

My 58 year old son has been followed by neurologist, thinking either frontal live dementia or PSP

From what i am reading seems more like PSP, his voice is quiet, balance off etc

He is on levadopa but dont see improvement

Cindy Labish

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