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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136 comments
My mother was diagnosed in January of 2025 but had all kinds of symptoms prior to that. It was her physical therapist who was astute enough to notice signs and sent her to be tested for Parkinson’s. We were not prepared for PSP. She is in stage two with some symptoms of stage three. She is still eating like a horse so I am making all of the delicious stuff she loves to eat. Being a social worker, I spent a year internship in Hospice Care and have put my mom on services early. The neurologist didn’t hesitate. My mother and I don’t want to see this thing to the end, so we have discontinued treatment. She will have time to get to know her care team, (Physician, nurse, social worker, chaplain and home care aide), and their sole purpose is to make sure she has a comfortable and peaceful passing.
I began my career working as a social worker in a nursing home and I remember seeing these patients and thinking, “I don’t want anyone to have this illness, especially anyone I love.” Here we are.
I appreciate reading everyone’s thoughts and stories. I am not looking forward to this. Right now, she has some cognition challenges, conversation is difficult, she uses a walker, lacks safety awareness, is incontinent of bladder and bowel and requires assistance with bathing, dressing and cleaning her private areas. She struggles with times of extreme anxiety, has OCD and is highly impulsive. She is becoming a little mean spirited with others and this is not like her. I miss her so much.
We must find a cause and a cure!
My mother has been suffering from PSP since 2021. We have been to numerous neurologists for opinions but we have got the same answer and diagnosis. It’s heartbreaking to see her slowly slip away from us. She’s now almost bed ridden, mentally active but apathetic and hardly able to eat. The doctors have said that may be a few months down the line a feeding tube may be required. She always used to be vibrant, active and full of positivity. I miss the old her. Reading so many comments here from people who have had a loved one suffer from the disease has made me feel like I’m not alone. Nevertheless it’s still a rare disease and very few people actually understand how to look after a patient suffering from PSP.
I just recently lost my husband of 42yrs after a couragous battle with PSP. He was thought to have Parkisons up until about 3yrs ago. PSP a horrible disease. I cared for him at home and watched as this disease take him peice by peice. First it affected his balance,then his ability to walk,bathe,talk,feed himself or even be able to open his mouth to eat. All while his mind stayed intact. It was heartbreaking. He loss almost 100lbs. A man who was always strong,smart,caring was as weak as a kitten. My heart is broken. God bless all who have this diagnosis and prayers for strength for thier families and thier caregivers. 🙏 for a cure. 🩵
My husband was diagnosed in 2020 he is in a wheelchair can’t move on his own needs help with everything got a hoist wet room he can’t talk it’s absolutely horrible seeing him so helpless
My mam has PSP …this has to be one of the cruelest thing ever ! Mam was very active , always helped people , we know something was wrong but believe it or not our mam never ever ailed anything and the last time she was at the doctor or even a hospital was 48 years ago when she had me ! Mam started to lose her hair in 2019 , maybe this was the first signs who knows coz personally from my view nobody seems to know very much about PSP …then changes started to happen very rapidly to mam , my dad cared for her 24/7 for the last 3/4 years , with carers going in 2 times a day ! Mam started to need respite more often …this give my dad time to rest , my mam is now in care 24 / 7 , she can’t walk , do anything for herself, it’s actually a heart wrenching thing to watch a person , my mam dying in her own body and is still fully aware or what is going on around her , there is no treatment, no meds , no nothing ,..I was actually brave enough to ask my mam consultant what would be the next step after the left side went (as the right side was already dead ) in the most nicest way , he just gave me a look in which I knew what was to come …. This has been a heartbreaking time for our family , the decline within my mam has been in real …the life span is up 2 6 years , in which we are going into year 6 now !! All we can do is just pray and take every day as it comes for all it’s very heartbreaking, you wouldn’t watch a animal suffer like this , so why watch a human … My Mam like this !!