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:
-
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.
-
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.
-
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.
-
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).
Discover the Benefits of Vielight Red Light Therapy for Atypical Parkinsonism
109 comments
My husband has PSP and I’m wondering if any of you have seen such patients become agitated during the night, sometimes thrashing, pulling and rearranging the blankets and pillows, sometimes talking in his sleep, reaching out, mentioning names from his childhood. We’re using Lorazepan before bedtime. Sometimes it works to give him three or four hours of undisturbed sleep. Sometimes not at all. Does anyone have experience with a different medication that seems to be effective?
My hubby has been diagnosed with PSP . He is in a care facility as his condition has deteriorated very quickly. Just wonder how long he has as there isn’t any joy in his life . He’s being fed baby food as he chokes . He doesn’t have any quality of life. I go and see him every day and try to take him out but that is getting more difficult. Life is cruel. Diana xx I’ve been married to David for 52 years known him since I was 17. It’s not fare xx
Son 61 diagnosed 3 yrs ago. Isn’t there someway to get rid of the protein? He about ready for wheelchair, but his mind is still sharp! Terrible disease
My dad got diagnosed with PSP at a very early age of 50 and since then it’s like the disease grew 20x faster. Early symptoms were in 2020 and by 2021 doctors confirmed it to be stage 1 psp. We went for a checkup last week and now they’ve confirmed him to have reached stage 3 and about to reach stage 4 soon. He has started coughing due to food and water entering his windpipe and while it’s dreadful to watch my dad like this, we’re grateful that his reflexes are still working. We don’t know for sure when they’ll stop but doctors have told us to be prepared for the worst at all times.. he was such an energetic person and now he’s always sleeping or tired and does involuntary movements, needs assistance at all times.. it’s only a painful journey to the end now..
After a six plus year battle with psp, my 78 year old mother passed away this week from psp.
We spent years caring for her and seeking Help. Thus if anyone needs help or has questions about symptoms feel free to reach out. My mom experienced all symptoms listed in the literature and ultimetely Died from aspirations due to swallowing.