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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107 comments
Wondering if anyone here was without a diagnosis for a period of time and sought out functional medicine that lead to this diagnosis? If so how long did that take?
If you were diagnosed by another type of Dr. .. what kind?
My husband is 73yrs of age with what the Dr calls psp.he started with a fall in 2018 and now he is of total care.His body is very rigid and cannot fold his joints..The Grace of God and prayers keep us going..Life is spiritual and a mistry..you are not alone..we look unto the hills where our help comes from. Take heart as we endure..
My husband is 73yrs of age with what the Dr calls psp.he started with a fall in 2018 and now he is of total care.His body is very rigid and cannot fold his joints..The Grace of God and prayers keep us going..Life is spiritual and a mistry..you are not alone..we look unto the hills where our help comes from. Take heart as we endure..
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?