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
Hi, thanks for all your testimony, i write you from France , i was looking more informations maybe from us. This disease its same every where. Injust, quick. I feel i say good bye everyday to one part on my father. . 5years already in this New life he was 60 years old, now he is walk with big difficult and chair . 2 days before he Felt on his mouth (open 12 point sew) and yesterday he was crying, i necer saw him cry .. cause difficultés to breath and swallow…. what make me pain is that even he knows that he can feel and broke his body he need to stand up many times because of anguish crise , he take xanax but i feel is not enought. Do you have advice ? To see my strong father feel totaly afraid and anguish with hard heartbeating make me so sad… i just want for him confortable “life” . Hugo to all , life is short but still beautiful
My mom was diagnosed with PSP four years ago when she was 74 years old. Now she is in an assisted living center and is wheelchair bound. My dad spends most of his time visiting her, and my sisters, my daughter, and I, each have an evening we spend with her during the week. She has difficulty eating and usually needs us to feed her. She watches tv ALL day. She may ask us about our lives but when we start responding, even if we’re mid-sentence, she’ll say, “Turn my show on.” I know she doesn’t mean to hurt our feelings but it’s still tough. She says she just wants to die. She has no will to live. She’s 5 feet 8 inches and is down to 112 lbs. This is SO hard to watch her go through. Who understands this?
My mom is in the hospital because her blood pressure was so low she would bottom out. A neurologist came into see her today because she was a Godsend. I’m not happy knowing my mother has PSP, but now I have some solid understanding of what she has been going through for a few years now. The last year has shown several changes of a spiraling mobility decline. I could see she had dementia but I felt like some how hers was different. She is 85 and so many doctors (etc) feel like she isn’t feasible to help since her life is short. I’m so beyond thankful today someone truly cared enough to do a great job today. It’s not what we want but now I don’t have to feel like there should’ve been something else I could’ve done to help. Now I can try to be prepared in every way except possibly emotionally.
Hi. My mother is suffering from PSP since last 15 months. The disease spreads too quickly to even notice! Initially she refused to take medicines and it agrevated the symptoms. Yesterday she was able to walk and today, she can’t even get out of bed. It has happened too quickly and I wonder what’s to come up next?! I am terrified for my mother. I stay in different city so it’s even hard not to meet her on regular basis. The trouble she faces daily is very painful. I believe she is transitioning from 2nd stage to 3Rd. To those who read this, or to the universe, I need strength to take proper care of her.
My wife has the disease, she has had it for more than 5 years now and is in the advanced stage. She walks with the help of a walker, hasn’t been able to talk since November of 2020. After falling and breaking her hip in February, she had a feeding tube installed that stopped the rapid weight loss she was in. Between her retired sister and myself, we have to care for her around the clock as there are alot of things she just can’t do by herself. We take it day by day and I pray for a miracle as the Doctor at Northwestern University Hospital has told us there is nothing more that can be done except keep her comfortable.