dad new to PSP need advice?: Hi everyone my... - PSP Association

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dad new to PSP need advice?


Hi everyone my dad was diagnosed Jan 2012 i think he may have had the illness possibly 2/3 years prior to diagnosis. At present he displays the following symptoms:

outbursts of anger/swearing



slow walking


chocking only if he rushes food

inhability to look up & down

easily distracted

easily forgets

sleep patern affected

he was diagnosed yesterday with fluid on the lungs the gp is running further tests on his heart, i was wondering what stage he could be at in the illness?

37 Replies


WELCOME to the site

the illnesss progresses at v different rates i tink i am sill a stage 2

i am still upright after beign dzd in dec2010

and hope tha ti hav ethe slow version fo the PSP

but i probably ad the illness5 years previously

My balance is mos t affected an d i am sitll fallign 4/5 itimes daily

but i am good

lol Jill


oh my goodness Jill sweetie please don't get hurt. I wish I could be there to catch you when you fall. And I didn't know there WAS a slow version of psp. I think Daddy has had it since 2006. His first sign was double vision. He's unable to get out of bed now, except a few hours each day when we move him with the thing-a-ma-jig, the hammock on wheels, can't ever remember what it's called. You're in my prayers Jill


I just realized your post was from 6 years ago. Lord have mercy.

Hi Jill,

lovely to hear from you sorry to hear you have the illness can i ask how many stages are there? by the sound of it i think my dad is between stage 1 & 2. is fluid on the lungs common with this illness?

jillannf6 in reply to kades

Check with the PSP website

It lists all the stages

Lol jill


kades in reply to jillannf6

Hi jill yes i've been on that dosen't specify though thanx anyway xx


Sorry to hear about your dad. My mum has PSP.

The worry with PSP is that fluid on the lungs could be aspiration pneumonia from swallowing down the wrong way. I don't think fluid on the lungs as such is always/only related to PSP. Hope you get to the bottom of it.

This site sets out the stages quite well but people progress at different rates with different things. My mum could still walk until recently but has not spoken for years whereas I have heard of someone who is bed bound but can still talk perfectly well. And not everything happens to everybody.

All the best



kades in reply to CateT

Hi cate, the doc seems to think its more of a heart related conditon as if it was aspirational it would have coughing, chest infections etc and he dosent have that thk god xx

My brother was diagnosed 2 weeks ago. I believe he had it for a long time and just misdiagnosed with a bunch of other things.

All the symptoms are familiar in his case except the anger. Maybe he is just frustrated with being ill. I know I would get mad and swear if this was happening to me.

Sadly, I am unfamiliar with early and middle stages. We only found out in last stage. From what I have read everyone is affected differently. I know that is not the answer you might be looking for. You want solid facts. I wanted them also. I can deal with facts, even if they are scary. Fluid on the lugs seems a common factor when breathing is an issue.

Hope this was not too depressing or helped.


kades in reply to jprall

hi j. sorry to hear about your brother how long has he had it for then xx

jprall in reply to kades

Well, that is unknown. We took him ton hospital because of severe weight loss and he died less than 3 weeks later. We will never now how long he had it. Thank you for your kind thoughts. Hoping you are well


goldcap in reply to jprall

My significant other has extreme outbursts of anger. This preceded his diagnosis by 5 years. (He was previously misdiagnosed with Parkinsons. I spoke with several caregivers and doctors at a PSP conference and all of them seemed to think it was not a common symptom. You are the first person I have heard mention this.

hi J

i knwo where you r coming from

it is a tgerribel illnesss but ha s ot eb dealt with by each person and familyh as best they can

try and ge t a good movement disorders consultant for yur brohter

lol jlll sorry you have the need for this site but you will get lots of help & support. Although PSP is listed in stages, everyone is different. Frank had symptoms from different stages at the same time. You would be better looking on the PSP website as Jill said. Hang in there, Take care & try to keep smiling. Love Hazel B xx

kades in reply to hazelb

hi hazel yes i beleive you can get symptoms from all stages xx

Hi Kades,

Sorry to hear of your Dad's recent diagnosis :-(

The 2 most valuable pieces of advice I can give you are:

1. Join the PSP association - its such a brilliant source of support and information. Details of how to join can be found at

2. Ask for help BEFORE it gets to the point of NEEDING it.e.g. ask for physio, OT, speech therapy, wheelchair referral etc NOW because it takes time for some of these things to be put into place and when you need them you want to be able to access them quickly. Even if all they do is come and assess and say they'll review in 6-9 months at least your Dad's name will be "in the system"

This forum is also a brilliant source of information and advice and also gives you somewhere to "let off steam" to people who know EXACTLY how you feel.

Take Care

love Kathy

jillannf6 in reply to Kathy


I agree .itnis so important to get things in place early

. Th e problem is re referral is necessary round here as OT ./ physio etc are so,over stretched



kades in reply to Kathy

hi kathy yes weve got all that in place the pysio, OT, speech therapy, all disability aids etc and dad goes to the parkinson and psp gym twice per week xx

Hi, kades, my father also was diagnosed with psp a few months ago.It's difficult for him to walk, he frequently coughes, he finds it hard to look down and he has trouble to swallow liquids.Also, he doesn't talk much during the day and his voice has become rasping and a little difficult to understand.We believe symptoms started about three years ago.It's an individual disease as it was mentioned above, psp patients don't experience the same symptoms.My father is doing physiotherapy and we have seen some improvement in his mobility.We also use thickener for his liquids and it's an effective product.We use papaya enzymes to help with swallowing (thanks to dllera!) - papaya helps dry up secretions.My dad spends much time on an exercise bike and i believe it helps his mobility.We find out that a recumbent one is a good choice.Besides,i have found some exercises for parkinson's patients from internet and we have some practice almost everyday.Generally,we try to keep him active as much as possible,we encourage him to write something, or i give him worksheets with simple brain games, for example the classic game "spot the differences".This site is very helpful,with many good people willing to share their knowledge.Psp assosiation is also very helpful and psp nurses can help you a lot.I wish you and your family the best, John.

kades in reply to john_z

hi john yes dad goes to the parkinsons and psp society gym twice per week, pysio etc and i have seen a great improvement in his weight loss, posture and general fitness. dads alright talking he just keeps forgetting his sentences, hes ok eating, walking is slow but he manages. like your idea re: the brain games and can i ask what the papaya is for is tha tto stop secretions of dribbling or to make the mouth moist for dry mouth xx

Hi, since PSP is different for each patient it is difficult to know what stage any patient is in. Also what is a problem for one patient only slightly can be a HUGE problem in another PSP patient. That's what I find so difficult about PSP. You don't know if what you are going through with your loved one is "normal" or even what is going to come at you next. You can't predict PSP in separate individuals WITH CERTANTY. Example: for my wife swallowing, balance, soft voice, small handwriting are and issue. However, eye issues are only dry eyes and not problems looking up or down (at the moment). Other patients may have major eye issues but not have much problem with voice. Wife does not have any personality changes at this point but obviously many PSP patients do. Best I can figure we are about three years into PSP.

kades in reply to jimandsharynp

hi jim, ye thinking now we think me dad is into about three yrs as at first we thought he had glucoma as his dad was blind. he was a beautiful writer now its like scribble. swallowing, voice fine mainly his eyes keep closing and slow to spring back but gp said he can have botox. hope your wife is ok great this site to relax my nerves as before this reading them leaflets god there daunting and you litterally think your going to experience everything. xx

jimandsharynp in reply to kades

Kades, Please post and let us know if you do the botox and how it works.

Jim p

kades in reply to jimandsharynp

hi jim, i will do the doc said at the minute dad is not ready for the botox as he gets a twitch in the eye and like i say occasionally the eye lid takes time to come back open. but the gp said if he started giving botox too soon what happens is you become to need it and if he has too much he wont be able to shut his eyes at all. the OT said if he needs it and the gp wont do it on the nhs she knows doctors who she can refer him to for free. why does your family member need it?

jimandsharynp in reply to kades

My PSP family member doesn't need it yet. I'm trying to plan ahead for any contingancies that might come up on this PSP road ahead. Must be the Computer Analyst in me. :)

Jim P

kades in reply to jimandsharynp

well you've got too, i read on one of these sites that someone had it in the elbows and knees to aid mobility so thats interesting to know theres some comfort for them eh ? .

Hi Kades,

Sorry to hear about your Dad.

My Dad too has PSP since 2009 - he's gone downhill fast it has to be said, so I don't want to alarm you, as like people have said, every case is individual. I wouldn't have thought my dad would now no longer be able to stand and needed to be hoisted everywhere... he was such an active man with loads of hobbies, loved crosswords and brain puzzles, and adored being round his family and young grandkids. for him speech was the first to go, then mobility, and touch wood he still has not so bad swallow, although of course my mum feeds him as he is unable to lift any part of his body now. He is truly 'locked in'. Thank god (really??!!!) he can still recognise me and the kids, and have the occasional small chuckle. i live for those moments. He said quite clearly on the phone the other morning (i am a sucker for routine - dad and i used to speak all the time) 'morning, franny.' it was whispered but definitely distinguishable.

dad had lots of anger issues at the start - very odd for such a lovely patient man. we thought it was frontal lobe like picks disease at the start as it seemed to be more behavioural. we had high hopes for a drug trial, then no change just gradually (actually quite quickly) lost all ability to walk or move.

god i miss him more than words can ever say - where do i start....all i can say is I share your pain...

Hope this 'helps'

thinking of you,

fran, alan (my dad) and family x

hi fran, alan dad and family. so truly sorry to hear your dad has progressed quickly and i can't imagine dad getting to that stage. 'm probably in denial. how long do you think your dad had it before he was diagnosed in 2009? when you say he's locked in is he that bad like locked in syndrome? how are you all coping as a family it must be heart breaking to see your dad like that. lovely to hear from you i truly hope that your dad dosen't progress any worse and love to all keep in touch xx

hi Kades

my mum was also locked in, she was in a baby like state, no communication, couldn't eat or swallow, double incontinent, slept all the time the hardest thing though was she knew what was happening, mum was diagnosed approx 16 years but in the early stages was mis diagnosed most was gradual we had the falling, the eye problems then mobility went all together, the anger and frustration and sometimes thought she was just being stubborn refusing to eat but that was not the case she was finding it difficult, she ended up having to have drinks with thickening fluid, and food was pureed nothing bitty, the last 2 years were really bad we lost count of the amount of times we were told she was not going to pull through only for her to seem to bounce back but these were short lived episodes and would occur every 6 to 8 weeks, mum weighed about 4 stone at the end and a peg feed was suggested but because mum was so weak it was not an option mum survived just on 2 weeks after coming home, we made her as comfortable as possible and stayed with her 24/7 palliative care were amazing in assisting us with pain relief etc and mum passed peacefully in her sleep, it doesn't make it any easier though and I miss her so much but I know she is not suffering the effects of this cruel debilitating illness any longer Make the most of the time you have and while your dad is still able do all the things with him that he wants as the different stages can just come on in a blink of an eye, best wishes to you and your dad xxxxx

hi izzy sorry about the late relpy i have been away sorry to hear about your mum passing away. when did she die? can i check did your mum have psp for 16 yrs as i thought the longest time was 10 years that they know of? dad has been told he has the slow version what do you think of this drug dauventide i hope it comes out and works for my dad he has had this illness we think about three yrs he has been diagnosed 8 months at present hes doing well so fingers crossed we get a break through i would hate to see dad suffer thanx for your comments xx

my mums symptoms started roughly 16 years prior to her dying, she was not diagnosed with psp until 11 years ago, we were told at the beginning she had early dementia which we now know was wrong, at first her symptoms were quite mild and over a few years, it was the last 2 i'd say were there was a rapid decline, i have to be honest it's awful to watch, we were told there is no treatment available but i would have tried anything.mum died last september so it's nearly a year now still miss her but i rest in the knowledge she is now free from all the suffering xx thank you for the reply xx

hi kades well mate like everybody else i have psp i have had this since 2004 everybody seems to be effected differently at different stages i personally have problems talking my voice is very soft and seem to mumble i fall over quite often backwards which is very annoying say the least and i have trouble swallowing but if you get a good speech therapist

and balance group or phsio they will try to keep you going and keep it at bay they have helped me they told me they would not be able to cure me but they would try to keep me going which i found that they have done at physio i go to balance group just once a week and i go for walks every morning rain or shine anyway mate stick with it im sure you will get results its as bad for you as it is for us with psp thank god for the carer i think you need a medal all of you good luck in the future and best wishes peter jones Queensland australia

kades in reply to peterjones

you seem to be doing very well peter your still blogging, this gives me hope for my dad as when you first hear of this illness all sorts of negative thoughts goes through your mind your an inspiration keep going xxx

hi kaders how are you going\ thank you for your kind words ive tried to keep fairly active which i think helps even when you do not feel like it im not sure how old your dad is but i am 76 years old now\ a young 76 i feel ive still got a long way to go yet and with a lot of help from my wife and my and my friends i will achieve this anyway i will not ramble on take care regards to your father \\its not always darkest before the dawn stick with it good luck ====== peter jones australia

kades, really difficult to stage as PSP progression varies. That being said, it sounds like he late first stage, beginning second. My significant other appears to be in the third stage. He has had inappropriate angry outburst with swearing from the very beginning and like a lot of others was misdiagnosed with PD three years ago. I found a caregiver's unofficial rating scale on the internet that has been the most helpful. I will try to find it again and leave a post.

Kades, found it.

Caregiver's Guide to the Phases/Stages of Progressive Supranuclear Palsy

Compiled by Patricia Lake of Texas and Mary Holeman of Indiana

August 8, 2000

In 1999 several members of the Johns Hopkins PSP Listserv decided to pool their collective wisdom to try to see if they couldn't catagorize the symptoms associated with the normal progression of progressive supranuclear palsy enabling the defining of phases or stages of the disease.

This is the result of these efforts. It was originally posted as a message on the PSPInformation mailing list. Visitors to the PSPInformation website often tried to find the information on the website and couldn't - so, "by popular demand" we are also publishing it here. does not claim any credit nor does it assume any responsibility for the statements made in this article. It is solely the viewpoint of the writers.

This categorizing of the symptoms of progressive supranuclear palsy is not meant to be scientific. If you are caring for someone with PSP you should realize the disease follows its own "timetable". The progress of the disease may be different in your case. The purpose of the article is to serve as a generalized caregiver's guideline to what to expect as the disease progresses.

We must also note that progressive supranuclear palsy is often misdiagnosed because the diagnosis is based on symptoms. Many symptoms can apply to more than one of the many diseases and conditions that are very similar and determining their real association can be very difficult if not impossible. Most patients may also be on medication and very susceptible to possible medication caused side-effects. Thus, they may develop symptoms that may be thought to be from progressive supranuclear palsy but are not.

The Phases/Stages of PSP

Phase 1 - Deterioration of handwriting and difficulty writing. Speech problems, difficulty being understood by others, slurring, etc. Coordination problems leading to unexpected falls and stumbling; change in walking rhythms/patterns. Vision problems; some complain of 'blurred' vision; some try prisms, but examinations by eye Dr. generally will only find normal vision physically. Lethargy, apathy, no desire to do anything; changes in sleep patterns. Cognitive problems; decrease of sound judgement, decrease in modesty; increase in impatience and irritability.

Phase 2 - Problems sitting down or getting up; cannot lower self into chair gently; just 'plops' down. Increased difficulty walking; begins using a cane for balance; will progress to a walker; increased number of falls. Stooped posture because of vision problems; can't see downward easily. Problems opening or closing eyes; some patients get 'dry eye' because their eyes do not close all the way. Difficulty dressing; cannot do buttons or zippers; hands and fingers do not work as they used to. Almost impossible to write anything legibly. Eating problems; coughing and choking; loss of eating etiquette; fills mouth too full; lots of spills; begins wearing a bib to save clothes. Bathroom problems; difficulty voiding/unable to get to bathroom in time; constipation or diareaha; may need help with personal hygene. Needs help bathing; may need hand rails/bathing bench, etc. A mobile shower head is a good idea, if possible. Weakness or neglect on one side of body; one side more dominant; ie: drags left or right foot, etc. (Shydragger syndrome) Subject to infections; urinary tract, respiatory tract (pneumonia) etc.

Alien hand; sometimes holds on to things and cannot let go or takes the hand a long time to release. Difficulty concentrating; sometimes seems 'out of it'.

Phase 3 - Some obsessive-compulsive behavior: ie: fingers "pill rolling", hands smoothing out imaginary wrinkles on table, etc. Increased irritability; increased impatience. May become incontinent of urine and bowel. Increased speech problems; often very difficult to understand; cannot articulate proper speech sounds. Increased eating problems; more coughing/choking. Increased cognitive problems; cannot follow stories on TV; cannot read much, due to vision; will watch game shows, some news. In Theater movies are not recommended, as some suffer from 'sensory overload'; loud sounds and many colors, lots of movement on screen make patient 'nervous'. sleeps much of the day, and all night, too. Instances of 'restless leg' syndrome. Limbs and neck may become rigid; may loose ability to support self on legs. Increased falls; some falls may be close to geing described as 'seizures'; complete loss of control of arms and legs, with reslutant fall. After fall, will sleep for an hour or so; may not always know whether is injured or not; may not 'feel' the injury. Increased coughing and choking; drooling becomes common; often does not close mouth; Infections may be more frequent. Requires much more help in dressing and with all activities of daily living. Does not speak much, but does enjoy seeing friends and relatives, even though patient may not respond much to them. May have pain in arms or legs; non-specific pain for no apparent reason; application of 'heat' rubs may help; Tylenol may also help.

Phase 4 - Unintelligible speech/mumbling; cannot say words; may go days with out saying anything. constant drooling; coughing and choking may become so severe that eating normally is impossible; Dr. may reccomend feeding tube, which requires a surgical procedure to install. May have trouble opening mouth, even for meds. Increased incontinence/constipation problems. Loosing insterest in daily activities; sleeps most of the time; uncomfortable sitting for any length of time; prefers bed. Cannot support self on legs; 'spaghetti legs'; body rigid, especially neck area. Little eye movement; cannot 'look' at something; slow to focus on things in view. delusions, hallucinations at times; may be disoriented and not know where they are. Pain, but cannot identify the area. Withdrawn, but remains aware of people; cannot move on own; needs extensive help for all activities of daily living.

Note: These phases or categories often overlap and are not the same for all patients. Some may have two or three phase 1 problems and one phase 3 problem. Some may never have all of the problems, but most will need extensive help to live out their lives and will need to be made as comfortable as possible for the duration of their illness. It is wise to gain from the patient, specific information as to feeding tubes, restorative therapies, etc. before the disease is well advanced; a living will is a good idea, so that loved ones will know how the patient wishes to be treated, should life threatening acute problems occur. Long term care will probably be needed and plans should be made before the patient becomes unable to participate in the planning.

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Document last modified: 04/22/09 10:48:55 AM

My wife was unable to get up from a chair for most of a year, then her doctor put her on carbidopa levidopa, and she was able to walk around the house, but not unattended because she would still fall. when she went to the hospital the doctors said she did not need the levadopa. they took her off of it, and she developd stiffness and pain, and could no longer eat or drink.

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