What are the 4 Stages for PSP?

What are the 4 Stages for PSP?

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:

  1. 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.

  2. 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.

  3. 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.

  4. 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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131 comments

My husband has psp+. No treatment, no cure. He has been fighting this disease for about 4 years now. He’s chair bound, won’t sleep in the bed, said it hurts his body. Chokes on food and fluids, he’s total care and I’m doing it alone. I don’t know where to turn to for help. He is 71 and I’m 63. Both retired. Any information on getting help would be greatly appreciated.

Laurie Garnere

My husband, he just turned 68, was finally diagnosed in 2021 with PSP after watching him act so out of character for a few years. Withdrawn, not much communication, a distant look in his eyes. He was the guy that worked 12 hours a day 7 days a week, and now he’s reduced to a wheelchair. He’s had numerous falls. December of 2019 he fell down the basement stairs and fractured the first two vertebrae in his neck. No loss of feeling from the fall. In the summer of 2022 he fell against a dresser and fractured 10 ribs and 4 transverse processes in his back and as a result has 7 rib plates in his back. 10 stitches to the back of his head, too many bruised to count – there are new ones every day it seems. I am his caregiver and have employed home hospice to assist me with bathing and the like. They are wonderful people and I recommend them if you are a caregiver for a loved one, they will ease your burden. We are in a support group through Cure PSP, helps us to not feel so alone.

Susan

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?

Letty

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

Diana

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

Jan cabral

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