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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118 comments

My husband band has maybe 8 was left. Due to a bad heart, bad back and Drn that had cancer he was diagnosed with progressive three years ago.

He has choked. Gingerale really helps with his swallowing. Delaying the need for feeding tube.
Amnytriptoline for restless legs, helps with early forms of spasms in legs. 100mg at night
He started with seizures four months ago. I took a video. The first was 45 minutes. Keplax for epilepsy 250mg twice daily . He is not aware when he has them. Tonight he started with shivering and cramping at the same time. He doesn’t have long. However, his mind is still strong.

Ruth-Anne White

We are trying to get a diagnosis for my dad. It looks like this is what he has. He has been falling a lot now and the eye movement is the biggest signs for us, inlcuding is very slow movement. It is painful to see someone who worked his entire life and to retire in this manner. Me and my mom has been doing our best to care for him. Like everyone else on here, it’s been really stressful as I have a demanding job. I want to care for hin as much as I can, as much as he lets me, but time always gets in the way. He has medicare but most programs that I know are so expensive and I can’t handle it.. He doesn’t have medicaid, I wish he has..

Anyway, I am writing this comment as I know I am not alone and there are people who has some information of what kind of help I can reach out to.. so thank you all in advance..

Sheena

Î’m french living in Cambodia,. I got PSP in last January. For now I try to make physical exercises everyday but it is more and more difficult but I want to help my adoptive son to help me

Eric VIEUX DE MORZADEC

My long time partner is now 74. 3 yrs ago, was initially diagnosed with Diffused Lewy Body by his Nuerogologist. After roughly 12 month or more, and sigficant changes to his symptoms, it was confirmed he had Supra Neuclear Palsy.
It has now been 3 yrs since. He has had several falls, 1 of which he spent 4 weeks in hospital recovering. He is showing all the signs of stage 3 symptoms. His speech has deteriorated, he has a walking aid in the house and wheelchair outside the house. He has attended one on one lengthy speech therapy and group speech therapy. I am his primary carer, and caring for him at home. We currently have a health provider to help with his physio, speech, occupational therapy. It has been monumentally stressful for my daughter and myself. Not only mentally, but physically as well. In saying that, we want him to stay in his home environment as long as we can, after all it is his home.
In conclusion. I am aware this condition is relatively rare. There is a lot information on the net about it, but wish the family and carers of their loved ones who have this terrible brain condition could have access to an organisation who specifically specialise in this comdion to get
the help they need.
Sue

Sue

I am so sorry to hear about everyone struggling with this monster of a disease. I said a prayer for each one of you. Always remember self care is the Best care that You Can Give Anyone.Ask for help from your family, friends, church members. If you have insurance most of them will pay for someone to come in and help you

Cassandra Wright

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