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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119 comments
My sister has PSP. Finally Dx in 2022. In Oct 2022 she was getting around with walker, eating and socializing OK. Prism glasses did not help. SHe loved books for the blind and got a GrandPad to play games and connect with family as ability to manage a phone became tooo difficult. Loss sooo many pairs of glasses and hearing aides. She is still alert but cannnot walk, feed self, talk is only few words and difficult to understand her. Sleeping more. Restless legs in bed and no abilty to control arm/hand movement. Just moved to hospice ans can no longer swallow pureed or thickened liquids. Such a sad disease robs them of all enjoyment of life. She still smiles at everyone. Just praying now for easy and uneventful last days.
In Dec 2023, I had a call that my sister, in New Zealand, had fallen and broken her arm/wrist. I flew over and within a week she was diagnosed with Supra Nuclear Palsy.
New Zealand is a national health country, which comes with challenges and long waits to get info and appointments.
She is now in a full time care facility for about 3 months, as she was falling daily which became too difficult for her husband to manage. About a month ago she became unable to walk and is now solely dependent on a her wheelchair. Although her mind is still good as she is the champion trivia player at her facility!
She will be 80 this year and it’s hard knowing her struggles and for me to accept the powerless inevitably of the wretched, so fast, decline.
Her birthday is in July and I plan to fly over to just spend time with her.. and see her…
I pray for a cure as soon as possible.
Jane
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
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.
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?