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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109 comments

Wife after 2 years symptoms finally diagnosed and has now marked various psychosis confusions …repetitious speech, obsessive compulsive three time repetitions of a phrase… quite mad behavior to be around ! … She echos back copy of your speech to you , has impulsve rocketing up from bed or chair with a declaration to act on something only to stop and and then not follow through… when engaged with any suggested activities has total apathy to any interests and lately is taking to stay in the bed day and night … I’m only caretaker fulltime … not having swollowing issues but some slips off edge of bed and several backward falls this past year … needs help with self care , eating and dressing etc…God Bless you all on this comment thread … I have great empathy and compassion for I know what you must be carrying in service to your loved one …

Timothy Richard Andrews

My dear Mother is currently in Hospital stage 4, PSP, 4 days ago the Nursing Staff could not wake Mum, she is still with us, sleeps all the time on morphine and pain killers for temperature. They have taken away all food, only given water which is square sponge on stick to place in the mouth. Mum lost the ability to speak, broke her wrist, ribs and fracture her hip. No Nursing facilities have wanted to take care of Mum due to 24 hours care, pretty sad. Mum went through througing her bed sheets on the floor and wanting to wear undies instead of pull ups. Become aggressive sometimes through frustration of not being able to communicate. My heart goes out to all Families who are experiencing this. Losing battle with no help

Donna Gannon

My dear Mother is currently in Hospital stage 4, PSP, 4 days ago the Nursing Staff could not wake Mum, she is still with us, sleeps all the time on morphine and pain killers for temperature. They have taken away all food, only given water which is square sponge on stick to place in the mouth. Mum lost the ability to speak, broke her wrist, ribs and fracture her hip. No Nursing facilities have wanted to take care of Mum due to 24 hours care, pretty sad. Mum went through througing her bed sheets on the floor and wanting to wear undies instead of pull ups. Become aggressive sometimes through frustration of not being able to communicate. My heart goes out to all Families who are experiencing this. Losing battle with no help

Donna Gannon

My husband has psp+. No treatment, no cure. He has been fighting this disease for about 4 years now. He’s chair bound, won’t sleep in the bed, said it hurts his body. Chokes on food and fluids, he’s total care and I’m doing it alone. I don’t know where to turn to for help. He is 71 and I’m 63. Both retired. Any information on getting help would be greatly appreciated.

Laurie Garnere

My husband, he just turned 68, was finally diagnosed in 2021 with PSP after watching him act so out of character for a few years. Withdrawn, not much communication, a distant look in his eyes. He was the guy that worked 12 hours a day 7 days a week, and now he’s reduced to a wheelchair. He’s had numerous falls. December of 2019 he fell down the basement stairs and fractured the first two vertebrae in his neck. No loss of feeling from the fall. In the summer of 2022 he fell against a dresser and fractured 10 ribs and 4 transverse processes in his back and as a result has 7 rib plates in his back. 10 stitches to the back of his head, too many bruised to count – there are new ones every day it seems. I am his caregiver and have employed home hospice to assist me with bathing and the like. They are wonderful people and I recommend them if you are a caregiver for a loved one, they will ease your burden. We are in a support group through Cure PSP, helps us to not feel so alone.

Susan

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