Hi, I am new to the site, my husband is 67yrs old, with PSP, can anyone tell me what are the last stages of this debilitating disease.

[skye07]

We live in Torquay, Devon.

[dorothy-thompson]

Hi Skye07

Welcome to the site. As I understand it there appear to be 4 stages of PSP, if you google Progresive Supranuclear Palsy, you'll get a clearer understanding.

However what I will say is that, like any other degenerative disease, each person's progress is different

My husband will be 74 in May and he was diagnosed in October 2010 but it probably started for him around 2006. At the moment he is stable and my biggest concern is his low moods and aggression which are very difficult to cope with. He is shortly to be seen by a psychogeriatrician to see how he can be helped.

Regards

Dorothy thompson

[skye07 in reply to dorothy-thompson]

Thank you Dorothy, I have been down every avenue looking for something to help my husband, but been told there is no medication and he is progressing very quickly

[Hidden in reply to skye07]

Although PSP does not have a specific medication there are some medications that can help for a while and to a certain degree with varying effects. For example, my mum had a fast version, lasting approx 6 years in total. At middle stage when she was diagnosed and declining faster than we could keep up with, Madopar did slow things really well and improve her mobility but within 6 weeks she was on the maximum dosage which was 10 tablets a day. This worked extremely well for about 6 months but was badly affected when we were temporarily persuaded to try some additional medication by a well meaning memory clinic locum (which was for dementia which mum didn't actually have but due to lack of understanding of PSP her slow cognition was misinterpreted). Mum did pick back up once we had the new medication stopped but never got back to where she had been and went to suffer 2 further and major setbacks-one serious gastro infection which dropped her into the need for Nursing care. She picked up over a month and was able to walk with support and go out with me in the wheel chair. She later had shingles and got over that too, so determined was she to get better. Mum's middle stage only lasted a total of 8 months and she was propelled into end stage by a urine infection. Infection is the biggest enemy for PSP second to falls.Mum was 77 and hers was a fast progression so is not an indicator of any particular time span. I always likened it to going down a flight of stairs and every now and then a step or two was missing so she would drop a little faster. All you can do is make the most of each good day and be vigilant against infection. Best wishes, Dianne x

[wifemo in reply to Hidden]

Hi daughterno1 -

As you say, everyone is different. It was Madopar which threw Tony into confusion and aggression when prescribed by a "well-meaning" clinician on discharge from main hospital to cottage hospital, without advice to monitor. Once we realised, we managed to get it stopped straight away. I suppose a try-it-and-see approach is as good as any ...

Hope the Christmas period was OK for you.

Happy New Year,

Mo

[Hidden in reply to wifemo]

Hi wifemo, yes the Christmas period was a tricky one for me as it was always mum's favourite time of year and last year it was Boxing Day when she went suddenly into end stage (almost as if she hung on for Christmas). Although it was hard to stave off the tears when Christmas was looming , having my family around me kept me so busy I hardly stopped and it sort of wafted me through with only a few 'moments'. I can't believe it has almost been a year since mum went. But at the same time it has been the longest year ever. I hope Christmas was OK for you too. Happy New Year to you too xx Dianne

[wifemo in reply to Hidden]

Hello Dianne -

Yes, our son came over for a few days and I didn't "wobble" until after he had gone and I suddenly felt on my own again when catching sight of a photo of Tony and me together in happier times. On the Friday, we joined his girlfriend and her family (and dogs) at Wells and walked along the beach towards Holkham - a bit windy but a bright, sunny day - to blow the cobwebs away. (I still haven't seen 'Shakespeare in Love' to know what all the fuss is about Gwynneth Paltrow walking along that stretch!)

Mo

[SharonAB]

Dear Skye07,

As I understand the 'stepping blocks' if you like for the disease vary enormously from person to person right down to the last stages.

When I read what is written 'officially' to help me determine where my husband is at with his disease and will be at for how long I am none the wiser. For when someone is in the later stages, a person can remain so for an extroadinary amount of time or for very little time , hence the anguish and pain felt by all associated with this horrendous disease. Even when people go downhill fast, or are progressing slowly then it doesn't always continue so it all adds to the confusion.

The 'physical' aspects of your husband I imagine have undoubtedly slowed right down,hence your question however it is what is happening on the inside that matters, and that it what makes it so hard to determine how and when.

Have you been able to take one step back and concerntrate on all your husband now he can do with or without assistance and use them as guidelines for open discussion with medical or other suport people you have.

It is a daunting evaluation check but could be beneficial in working out the best for you and your husband the days/weeks/months or years that are ahead.

I know when my sister was unwell (with another condition) I had to ask a few hard hitting teary questions, before I received some answers that I could understand to determine where things were really at, to determine what I could then do to support her.

Regards,

Alana - Western Australia

[edkor]

All I can say is to enjoy life now. Because the pain is only just starting and I currently haven't find anything that slows it down or reverses it . But I will keep trying. I am on here just briefly Cause of the pain. Please post your own trials . I am sorry to be very to the point but its hard to be nice when I am in constant pain . All my prayers and good luck.

[Kathy]

Hi Skye07,

Sorry to hear about your husband's diagnosis and progression. If you haven't done so already can I suggest you contact the PSP association

pspassociation.org.uk

Helpline 0300 0110 122

They have a range of information and advice and can put you in contact with local support in Devon.

Take Care

Kathy x

[jillannf6]

Hi there is no fixed Time for PSP to take its course

Everyone Is different and I'm can only say what everyone say son this sit e

Enjoy what you can of each day (easier said than done))

Bur,plain for,t the future too re aids to,helpw him

[daparose]

Hi, I want to say just enjoy each day as it comes and I know that is not always easy, try not to get to wrapped up the illness, symptoms and stages which is something I did and now regret. I lost my dear husband on the 5th December, 2013. I wish I had spent more time with him and spending quality time with him instead of constantly looking after his physical needs, I know I had to do this to help him but sometimes I was so tired that I forgot that he was my husband. I miss him so much so just enjoy the time you have with him now. From diagnosis to his passing was two years and in the end it was just 1 week however in total he probably had the illness for seven years. My thoughts and prayers are with you all.

[wifemo]

Hello skye07 -

Welcome to the site - you will find much help and support.

As others have said, enjoy what you can each day, especially your time together. I still cherish the cuddles.

Also - please look after yourself, as you will need to be the strong one, accept help that's offered, and try not to lose too much sleep (a night-sitter can be a blessing).

The PSP Association specialist nurse for your area will be able to give you some pointers where to go next.

Best wishes

Mo

[Heady]

Hi Skye07

Really sorry to hear about your husband. Mine is 69yrs and was diagnosed last September, but has probably had it for years, certainly for the last three years, since he had a stroke.

I'm afraid there is no magical cure. S is on Sinemet, which seems to be helping a bit. An anti depression tablet, this has worked a lot, but that might be from the stoke symptoms. They have just put him on a new drug, but has only been on it for a few weeks and still at the initial dose, too be upped twice before we see the doctors again. So still early days, but I am seeing some improvement in his mental state.

As to telling which stage is which, nobody knows. Certainly not the medical profession! Like everybody else, you are on your own! This site is an enormous help, we are all going through the same as you, each of us experience days of extreme lows and days that are OK.

Like everyone else as said, it is every day as it comes, try to keep life has normal as you can, well you have to invent a new normal for you and your husband, but it can be done. Concentrate on the things that your husband can do, not the other way around. We have just come in from a long drive, which is something we would never dream of doing, but it's great, tiring for you to drive, but there is no worry about falling, take a bottle, so you don't even have to worry about finding a loo! I can promise you, a couple of hours of not having to worry about these, sorts me out for a while!!!

Make sure you are getting help, don't be proud, this bit is probably the hardest, but you have to fight that. The biggest thing, is fight! It is not only your husband that is going to suffer, your life has totally changed as well and you will have to fight all the services to get the treatment your husband needs. Don't be shy, roll your sleeves up and kick and scream until he gets help.

Most of all, stay on this site, we are all helping each other to get through this. Read as much as you can of the old blogs. It really does help, some blogs can be depressing, but they are truthful, something you will not get anywhere else. A lot can be funny, loving, but most of all, you can really feel the caring that is flowing through the ether to you.

Keep in touch. We all care about how you are doing,

Lots of love

Heady.

[MoragR]

I found this explanation of the stages of PSP on this site last year & found it useful - can't find it now, but this is a copy of what I saved. From my experience with my dad the stages roughly work but as it says at the end its not clear cut stages, there's lots of overlap and differences between individuals..

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.

[coyle51]

Hi skye07

I am sorry to hear about your husband, my mother has PSP, she was diagnosed nearly 18 months ago at the age of 78 and probably had it for several years before that. The information provided by the PSP Association has been enormously helpful in terms of what to expect, they can send you the information. I would reiterate what others have said it varies considerably from person to person however, get as much help as possible, cherish the good times and look after yourself. I have not always known who to ask for help so my advice would be to ask everyone, friends, family, doctors, social worker, charities etc, there is help but you will probably have to ask for it.

Good Luck - coyle51

[jimandsharynp]

I've posted my feelings on stages before but new people haven't read them. My wife has PSP. We take one day at a time not worrying about stages. I've asked many about stages an most say they aren't totally accurate. Point: you could aspirate, get pneumonia, and die in stage one. You would never make it to stage four so it's a waste of time trying to figure out stages. Time better spent with enjoying life. The PSP road can be long or short. O know patients not far along who have terrible falls with concussions. Fact is there are no guarantees with OR without PSP so spend your days loving an caring about today, not tomorrow. A recent post on another PSP site by a woman who just had two strokes not related to PSP. No guarantees in life, live each day and enjoy what you can in them.

Jimbo

[stekelly]

Hi skye07

as has already been said everybody is so different

my dad was miss diagnoesed with parkinsons around about 3/4 years ago and was offically diagnosed with psp jan2013 dad passed away 20th december 13

he has tried various drugs etc nothing making it really any better what i will say is keep the parkinson drugs going in as help dad as when he was took into hospital in october with an infection they stopped the parkinsons drug and he got locked in syndrom couldnt talk/swallow but when that started again he got that back

also if you can get physio then get it it as that would have extended dads mobility we waited 9 months for us to get it and took threats of the newspapers/tv/local mp and we had it the following day as he was was walking aided up until april then the carers who assited mum said it was safer to use the wheel chair to get him to the toilet etc and with this his legs went not long after he was bed bound.

he went into a hospice for help 10th december and was wiered as he was was out of pain and on less pain relief and so comfortable mum was able to be his wife and not his carer.

he passed piecefully on the 20th december with his family around him that never left his side for the duration.....

out of this tho we always wanted dad to pass at home but so glad he went into dr kershaws hospice as at home he wouldn have beena s comfy and pain free and also when the swallow does go there are plenty of medications you can have in patch form parkisons aswell which we were told we couldnt have in the community but thats not the case.

are you in contact with ths psp assosiaction?

do you have a district nurse?

do you have any carers?

do you have a mcmillan nurse?

if not get this asap as will help along the way best getting things in place asap than waiting till things become harder for you both.

sending my love in this horrible illness our loverd ones were unfortunate to get xxx

[dorothy-thompson in reply to stekelly]

i am going to say something now which I know will upset you all!

I want my husband to die.

He was diagnosed with PSP in 2010 but it started in 2006.

And you did not know him as a young man, handsome, charming, sociable, generous, a good and loyal friend who cared about the planet, the people and wanted to and did make a difference.

He is now a shadow of himself, he has no quality of life and we have always agreed, quality not quantity. I do not want him to go on just because, sorry if I upset anyone but j saw my mother die a lingering death from cancer many years ago, I do not want this for my husband.

Dorothy thompson

[stekelly in reply to dorothy-thompson]

dorothy

non of us know any of the full background of any of the people suffering with psp same as you didnt know my dad who died from it in december we had his funeral yesterday!

which could only be classed as a real celebration of my dads life talking about things we did as family etc didnt have enough time as we could have talked for weeks,months,years....

the simple thing is if it was an animal in the pain and suffering they would be put down.

so i dont think you will upset anyone as we probably all feel the same when we see our loved ones suffering just probably dont say it out loud!..

but we all feel your pain your going through im just glad my dad isnt anymore its just the pain from our broken hearts!!!

[Hidden in reply to dorothy-thompson]

Dear Dorothy

I understand how you feel, and I'm sure many others will understand. My wife is not depressed and enjoys the company of children, grandchildren and friends, BUT she says "she is ready to go". I do not want to see her suffer with the increasing severity of PSP symptoms over the next couple of years, and so I am also ready! We have an Advanced Health Directive (living will) in place, stating no resucitation, and no interventions like PEG.

This is a very personal decision and others will follow a different path. Holding on to our loved ones as long as possible is totally understandable. Nevertheless, we have to make difficult choices when it concerns their quality of life, comfort, pain and state of mind. I struggle daily with these matters. We do live from day to day and try and enjoy what we have but knowing that my wife's symptoms will only become worse, we both would prefer a speedy end (even our own GP wished this for her). However, PSP symptoms have their own timeline, and the challenge is to cope with whatever comes our way! Not easy!!!!

Best wishes

T.

[skye07]

Hello and thank you to everyone who sent a reply to my question. I have taken on board all the advice you have given to me, and I am sure it will help me to cope with this horrendous illness. Yes I have a carer during the day, and a Marie curie nurse comes in a few nights a week which let's me sleep, and is a godsend. My husband has a meeting with

A dietician tomorrow, to discuss having fluids and medication peg, I am still a bit apprehensive about this intrusion, but it is so distressing watching him struggle, his speech is so bad, that I cannot understand him, which is very upsetting, he catnaps, but is up most of the night in his chair, where he can have a bit of sleep, but most nights he cannot lie or sit still for long, he really fidgets most of the time. I will continue to look at this forum, as I am sure you will all be a great comfort to me, and I appreciate that very much.