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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122 comments
Please feel free to connect. I do not know if u have PSP but it’s possible.
My husband will get his PET scan in oct. . I want it all to be over.it feels like I am constantly grieving. I feel like giving up I feel we are cursed I have chronic Fatique syndrome fibromyalgia plus bipolar with severe depression. Nights are hard he refuses to be catherized as basically he pee every 15 mi. So at night he needs to pee he has pads on but wants to pee so he uses those Lysol wipe large containers empty of course. I think he can’t see to use urinal. So I have to wake up 3x at least night to empty them How is this a rare disease when so many here have it I have phoned nursing agencies here in Canada the federal gov says a NA or HCW has to have 5 hrs of uninterrupted sleep. When was the last time he had 5 hrs sleep oh and a separate bedroom. My husband has severe abdominal pain it is like he is in labour you can see his stomach move like he has a baby in there. I have decided I am giving meds that I feel he needs not what drs have said yes or no. I have muscle relaxant if he has horrible pain that he screams. Emerg told me to give tylonal he is a strong mam and never cried in his life even if had heart attack So I also give Ativan as he needs something to tide him over for muscle relax to work. All these meds I fought dr for as dr reluctant as might become an addict at 70. Does anyone have these abdomen spasms. Here very hard to find family dr so I have to keep him. Misdiagnosed since 2 yr of pandemic as Parkinson’s Noticed wierd problems with eyes went to eye dr saline drops eyes Then decided to be referred to university movement disorder clinic Rude dr did the PSA eye test in 5 seconds and said he has PSP and gave lecture on constipation Went back to first neurologist getting a pet scan in oct I give him it vit E magnesium Found these recommended on internet Ck therapeutic dose. for cramps spasms VitE and , magnesium as muscle relaxant in am and pm. Constipation is a major problem. His bowel routine is stool softener 2 caps in am then you mix laxaday in 8 Oz water. You have to get to know his bowels to know like Alice what is too much diarrhea and too little too much. Give fiber in bfk have to judge as too much caused abdominals spasms. Use Raisin Bran. Oatmeal cut up prunes
Start slow Ck swallowing. Bed routine. Goal in bed 830 to watch tv. As I get meds ready as has dry cough at night I give 5 to 10 ml dry cough syrup Ck with his pharmacist if interacts with his meds if not will hack cough all night and have no sleep. As chest tight and breathing raspy give ventolin inhaler also give night parkinsons meds. Magnesium and 2 tylonal extra strength redenteric coated Now this is our med routine. Which can change. am not a dr. Or medical professional I also massage muscle cream on his calves under knees and sometimes wrap with elastic bandage but if gets up at night no as May trip I massage his neck back of head shoulders right down to hips and coccyx. He likes the creams over the counte that are medium warm I also use ice cold roll on called breeze ? Found in medical supply store it cuts the pain in his abdomen and if he had Charlie horse. Cramp in calf. I try to get him up to stretch his calf if not I try to do it in bed or try to massage calf. I also give melatonin under the tongue for sleep 6 mg. One. 3 mg.Watch that he gets water to dissolve it then one other 3 mg total 6 mg. Ask pharmacist he sleeps on his side with a pillow between knees He is at point he is using walker but we have to get WC help fr prov gov poor I watched Carrie rice video on her father and the dr gave the the news flat out esp G tube can still aspirate on saliva The university of Florida seems to have better ideas on PSP some hope there sorry Dr ? I was in despair today and i accidentally found your stories. The BIG thing is the Talk about what he wants I want adult child want helper don’t want Have gone to dr to do the provincial goals of care but this has to be done again as dr did not do what we want and I want my adult child there too. Will have to get my psychologist to contact dr.to advocate remember I am mentally ill Please. All I wrote about meds etc I use is our plan I am not telling you what To do To give My husband can cry inappropriate Has inappropriate behaviour. Can watch inappropriate TV. Can be belligerent At one point I was told he had frontal dementia but this also can be PSP. He goes to physio who tries to help w speech too. Everyone has suggestions but no one gives you money 💰 for all these therapies Regarding eyes I am going to try to prism glasses fr provincial health.or med supply It will allow him to look down to eat and to do circle word but I don’t know. If he can do circle word I found finding trained help fr agencies very frustrating as it is 25 $ hr Canadian and you end up checking everything they do anyway or they cancel last minute. I am going to put an ade in local paper to see if any nursing ade or mature women would work one night a week or every 2 nd wk 8 hrs so I can have uninterrupted sleep. I also have no shame and ask old friends for money so I can get more help or buy more depends. I hope all this helps
I am a caregiver for my good friend in Stage 3 of PSP. She is 78. Her eyes run like a faucet has been turned on. Besides eye lubricants has anyone tried any type of eye drops that help dry up some amount of fluid that comes out? Thank you.
My husband has PSP he just turned 65 such an energetic man hard worker a jack of all trades. Now all I see is a man that needs tremendous help showering eating brushing his teeth etc etc. He has trouble walking he uses a walker he is loosing vision which makes it difficult for him to sit and watch tv. He’s a big fan of baseball these days all he does is listen to the games. I’m his care giver but I’m up there in age (67) I’m a diabetic and work part time. My husband needs more help due to his poor eye sight he has several accidents getting to the bathroom. Thank you to those that shared stories of a loved one dealing with this horrible decease.
Hi all. My father was diagnosed with psp in 2019. His condition has rapidly deteriorated. He is in a public hospital right now for over a month. He was taken there because he started vomiting blood and they found that he had gastric ulcer. While at home he was on a wheelchair able to eat food but had difficulty with water. He cant speak anymore. In hospital the doctor decided to do a gastrostomy (feeding tube in stomach) becasue they claimed he will choke if fed by mouth. After 3 weeks of been fed exclusive by drip feed they decided to feed him through the feeding tube. They fed him for two days and then they concluded that his stomach can’t digest the food. They said they will try again today more slowly and less portion. But they said there is a very large amount of liquid in his lungs and he will need to be transferred to another hospital. We are disappointed because he was “well” one month ago, at least he was at home, eating and enjoying the family. Is it the end of him? Or all this liquid in his lungs is due to his condition of lying on a bed in a hospital for over a month with no food and a very bad psychological condition?