Hello everyone, this is my first post on the forum. My Dad has PSP and I feel we may have crossed a line into a new phase of the progress of this disease. I’ll explain what I mean by that further on.
Please forgive the long post. I wanted to detail my Dad’s PSP journey - it may be of interest to others who are going through this process. Primarily though, I’m really interested to receive replies from members who can identify with Dad’s current plight, and what the future may now hold for him, and for us as his carers.
Dad is 77 and lives with my mum who is 75 and is generally healthy. She is his main carer. My sister lives locally to Mum and Dad and she visits them 3 or 4 days a week for several hours, calls mum every day and is wonderful at providing emotional support. I live a 4 hour drive away so my visits tend to be a few weeks apart, but I stay for several days at a time and provide support that way.
Although Dad was formally diagnosed with PSP in the spring of 2021, I think his symptoms first started to become apparent in the back end of 2018 with eyesight problems that the opticians never seemed to be able to quite manage with spectacles. He was also having the occasional unexplained fall. We had no idea at the time that these were the first signs of PSP. Also, perhaps not an initial symptom, but something which in retrospect seems suspicious was an increasing amount of neck rigidity which started around 2016 so a couple of years prior to the other symptoms.
Since then he has endured the sort of gradual decline the likes of which members of this group are sadly all too familiar with. In the two and a half years since his diagnosis I would list the following as the main changes in Dad’s health.
His balance has declined to the level where, although he is sometimes strong enough to stand unaided from a sitting position in his chair, he can barely take two steps before he crashes to the floor. He can’t use his arms to break his fall or cushion his landing. He falls like a felled tree. He also freezes and we find it hard to get him to sit without pushing him down from the hips.
His fine motor skills have declined to the point where writing and using his phone’s touch screen are impossible. He just about manages to use a spoon to eat, however, we have to load his spoon for him because he cannot see down to his plate.
His eyesight is now very bad. His neck is rigid and his eyes won’t point up/down/left/right. This means that his gaze is fixed forward and he can’t see obstacles on the ground when walking (although we have to stand in front and guide/stabilise him now anyway). He can’t feed himself as mentioned above. I think he has something like ‘tunnel vision’ where there is a central spot where he can see well enough to watch sport on the TV. It’s hard to ascertain exactly how bad his sight is because It’s so hard for him to communicate.
His speech has recently become almost impossible to understand other than a simple yes/no answer. We can sometimes guess what he is saying if we catch the odd word in the middle of a sentence. His voice is now very soft and quiet which makes it harder to understand and he just can’t form words any more. This is something that I know he finds particularly frustrating having been a natural and skilled orator in his professional life (not to mention being the life and soul of the party when off-duty!)
He is able to respond to thumbs up/thumbs down questions and through that medium of communication we are sure that he is sound in his own mind. I believe he thinks clearly and understands what is going on around him. However there are personality changes which I believe are down to PSP. His mood was understandably very low following his diagnosis and he was almost immediately prescribed sertraline which I think helped. His impulse control is compromised and he drives my mum crazy by getting out of his chair the minute she leaves the room (with the inevitable fall). He also went through a phase of laughing in an uncharacteristic way at anything that was amusing. This phase seems to have passed and his face betrays very little emotion now. I do notice periods where he seems more confused than I would expect. I think these coincide with times when he may have a mild infection. He had a water infection recently and was very confused/hallucinating which I gather commonly happens in the elderly.
His continence is failing. To start with, urination was difficult because he couldn’t see where he was ‘pointing’. He became constipated, only passing waste every 3 days or so. I should mention that he takes medication for ulcerative colitis which thankfully hasn’t flared up since the PSP diagnosis. His urinary incontinence has progressed to the level where most of the time he doesn’t realise he has urinated. He wears an adult nappy 24/7. Since moving onto pureed food his bowel movements have become more frequent and also less controlled. He is constantly asking to be put on the commode (which also drives my mum crazy) but often doesn’t produce anything, only to later defecate in his nappy or as he is trying to sit on the commode. I would say he is close to being double incontinent.
All the above symptoms are bad enough, but the one which I feel is causing the most problems is his swallow. He is at the stage now where anything other than pureed food will cause a choke of varying degrees of severity. These are frightening for us and for him and he is left trembling after some episodes. To start with he was much better with pureed food but is now starting to choke even with that. The issues around swallowing have meant that he is not getting enough nutrition or water. He is losing weight at around 1 to 2 pounds a week and has suffered water infections twice in the last two months. He is aspirating when eating/drinking and also sometimes does so due to his inability to swallow saliva secretions from his mouth, although this is being helped by scopoderm patches. He has had a couple of mild chest infections but thankfully nothing too serious yet.
We have been helped by a good team of health professionals who have been wonderful and kind. Mum and Dad pay for carers to visit morning and night to help with the getting up and bedtime routine. Dad’s lead nurse has said that it is time to make a decision about having a PEG fitted because he isn’t getting enough nutrition. Dad has previously indicated that he didn’t want to have a PEG and he has stuck with this decision. The nurse tells us that he can always change his mind, but only to a point beyond which it will become too dangerous to fit one, although I’m unsure what the medical reasons would be for this.
I understand his decision not to want a PEG. Although having a PEG would mean that Dad would get better nutrition and would prevent further weight loss and reduce the risk of choking and aspiration, it comes with a big negative. I know that his quality of life is such that he has no desire to live a longer life but for that life to be one that offers nothing but further deterioration to a point where he may be more-or-less ‘locked in’. And this is the one and only positive of choosing not to have a PEG. It gives him some control over his situation in that it will most likely hasten his release from this disease. However the journey to that release feels bleak. I can only see an increase in his malnutrition and an increase in choking episodes leading perhaps to a catastrophic choke or increasing episodes of aspiration pneumonia.
This is why I feel we have crossed a line. I wonder what the future holds for him now this decision has been made.
To the members of this group who have already lived through this. What are your experiences of the journey from this point? How long can we expect my dad to survive without adequate nutrition? What will the effects of malnutrition be on him? How much discomfort will he be in? Does this sound like final stages? Which of the many hazards may finally claim his life?
Again, sorry for the long post and thank you very much for any comments or guidance you can offer.
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Army360
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my husband had PSP when he was aspirating on fluids his doctor prescribed Donepezil at 10 mg. It improved his swallowing and speech. When his aspiration returned 2 years later his doctor increased the dose to Donepezil to 20 mg. Again..his speech therapist was amazed at him improved swallowing. The NIH has a paper on PSP which states that PSP patients can benefit from up to 20 mg at night. It also helps with sleeping. Both times this Med was started and again when increased, my husband’s facial expression was such that a light was turned on in his head. My husband had a head injury later which resulted in us getting a peg tube. The peg tube allowed him to get the fluids and medications he needed. Some challenges we experienced were a bleeding peg tube caused in my opinion from too much physical therapy only 4 days after insertion. My husband received one pint blood transfusion while we waited for bleeding to stop. At home he preferred to be in bed receiving his pump feeding. A medication to prevent ulcers was sent home with us which made him feel bloated. Once we stopped giving him that medication his feeding improved. Due to an oral antibiotic, my husband had an aspiration event. I learned that when you stop swallowing the muscle at the end of the esophagus becomes weak, this causes other issues and requires patient to stay at 30 degree during feedings and for 1 hour after feeding stops.
Thanks for your reply. I have read your comments on Donepezil in other threads with interest. It’s encouraging to read that it had such a positive affect for your husband.
I’ve checked out a couple of the NIH studies as below...
The studies don't seem to mention donepezil’s positive effect on dysphagia but does mention a negative effect on active daily living and mobility to the extent that it is not recommended for treatment. I know it’s a small sample size, but I wondered if, along with the improvement in your husbands dysphagia, did you notice any deterioration in his ADL/mobility?
I did not notice a decrease in his ADL/Mobility. When we started Donepezil my husband was already using a rolling walker. His vision was impaired and he had been diagnosed with dementia based on a bedside test where he was asked to draw a clock and he drew all the hands on the right side of the clock. What I can attest to was that when he took Donepezil his cognition, voice and swallowing improved. His facial expression went from "masked" back to normal. I just went back and looked at photos to confirm his facial expressions did return to normal. I was his sole caregiver and I was helping him with most grooming because he could not get his walker through the narrow doors in his bathroom and his eye sight and hand coordination were already challenged due to the illness. I wish you the best.
I'm so sorry to read your comprehensive letter, which mirrors our experience with PSP which sadly ended Christmas 2019.
Am I right in assuming you are in the UK, it would be helpful to know as things vary from country to country when treating PSP.
My husband too was adamant he didn't want a PEG. He also had numerous falls so we had a commode to move him round the house which together with a Sara Steady to help get him up and down from bed, chair etc. etc. With regard to incontinence, he wore a Conveen, an external sheath catheter which was invaluable.
Our GP was wonderful and he together with our lovely community nurses and a team of carers meant we were able to keep him at home until he died, which is what he wanted.
Sadly, your description of your darling Dad means that he is possibly getting towards the end of his journey. It is difficult to predict as everyone has their own journey but once feeding becomes difficult or even refused then it is just a matter of time.
Your Mum, sister and you have all done wonderfully, so keep on keeping on.
Thanks Anne for your advice and kind words. It's Mike by the way, my username is ARMY360! We are indeed in the UK. So much that you mention are things we didn't expect to be familiar with only 2 years ago - commodes, wheelchairs, incontinence, Sara Steadies (we've just got one of those). Thanks again x
I recognise everything you have described as exactly the same as my husband except that a previous stay in hospital had caused him to return home with a catheter fitted. Although it wasn’t without its problems it did avoid a great deal of distress for him.
One device that was a blessing for me was his chair sensor which warned me that he was up from his chair. It was a little slow in sending out its signal but meant that I could reach him quickly from the next room and avoid the majority of falls. I had a motion sensor pointing at his bed overnight so that I could quickly get across to him if he was trying to get out.
A medication called Hiprex certainly seemed to avoid any new urine infections but it was a very large tablet and caused its own issues. I believe it can now be dispensed as a liquid.
My husband did not want a PEG fitting and he did eventually get aspiration pneumonia. He passed away very peacefully in the local hospital and we were allowed to be at his side as much as we wished. He is now at peace and I can only feel happy for him.
God bless you on your journey, stay strong and try to keep smiling.
Thanks for your reply Eaton7, the OT has been talking about a chair sensor and I agree that sounds like a great idea. I think the majority of his falls occur when mum has popped into the kitchen for a moment.
Hi Mike. We found the pressure pad chair sensor too slow to the alert. There is a type that connects to the patients collar at the back of the neck, giving more time for the carer to respond.
I haven’t reached this point yet but my Mum has the same decision about PEG feeding, she wants nature to take it course without intervention as she says her life is rubbish already and doesn’t want to be kept alive in torture.
I have been told that once the swallow goes you might have a maximum of two weeks but the hospice will support us is keeping mum comfortable but no fluids will be given. It is more painful for the people watching that the individual.
I have to respect my mums wishes unless she confirms otherwise no matter how hard it is for me.
So sorry to hear you’re all going through this. Your dad’s story is nearly identical to my dads in terms of timescale, symptoms, and stage. It’s peg decision time this week for dad as he’s been hospitalised since June with repeated infections and has rapidly declined as a result. Care in a hospital setting is essential now given the level of medical intervention he needs for suction, nebuliser, choking prevention etc and near constant observation of his stats. Dads stage and malnutrition means he sleeps more than he’s awake now and even thumbs up/down can be impossible some days. In truth, I don’t know how long survival is possible with a reduction in food intake. I’ve found great comfort in reading on here about a PSP patient who decided to stop her food and drink intake and didn’t want the peg. She posted to say her appetite went quite quickly and she was comfortable with just sleeping more. As heartbreaking as it was to read her final posts, she found peace in what was happening and that she’d finally regained control of her journey. She was finally deciding what was happening to her. It was brave and quite incredible 💜
Thanks for your reply. We've maybe been fortunate to keep dad out of hospital. He broke his collarbone in a fall down the stairs a couple of years ago, and has had many bumps and bruises since, but fortunately nothing worse.
Although this is my first post, I have read the forums regularly since Dad’s diagnosis, and followed Kayelless’ posts with great interest as I do all the posts from those who are actually suffering themselves from this disease. It helps to give an insight into how my Dad may be feeling/thinking. Her final post was deeply moving. I guess she is now gone from this world, but that paragraph where she talks about her moments before fully waking, when she dreamed she could still walk and talk like she used to, were so poignant especially to those of us on here whose lives have been touched by this disease.
I do think his wishes is paramount when thinking about Peg feeding. . My husband had 11 years of PSP, the last 4 years he was Peg fed ( his own decision) He did have 2 or 3 years of decent quality of life after the Peg was inserted. He could still eat and had fluids and medication through the tube. But the last year before he passed away of pneumonia, were not the best year for him and maybe he did have regrets about the Peg but I would never have known that. He was only 60 when he had PSP and was a fit man. So it was easy for him to make the decision to have the Peg.
Please explain the reasoning behind the Peg to your dad as much as you can but let him decide. Then there is no regrets for his loved ones caring for him. I wish you strength for the journey. 🙏
Kasenda, thank you for your words - I’m glad the PEG gave your husband those extra years. The reasoning behind the PEG decision has been explained to Dad by his Macmillans nurse and also the SALT nurse. I wanted to be super sure he knew all the facts and so I had a conversation with Dad a couple of weeks ago where, by yes/no hand squeezes he was able to confirm that he was sound in his mind and understood the far reaching implications of his decision. It was a challenging and perhaps a once-in-a-lifetime conversation but I’m very glad I was able to bring some clarity to it and help us as a family be sure that Dad is making the choice that he alone wants.
Damit my comments have just disappeared! Will start again ...... I am PSP diag 5 yrs ago at age 76 and am still functioning well. It seems plenty of exercise is so important .... so this may be too late for ur Dad?
i made my own protocols since medics have so little to offer, and I try to avoid any drugs - they make me zonked!
I have all these suggestions and info in my occasional 'Update', and will be happy to send you the latest if you give mere email address, please?
Best wishes, and Please Stay Positive = PSP! TimbowPSP
timbowPSP - thank you for your comments, I have read your post ‘PSP best advice = Please Stay Positive’ very interesting! You are right, I think exercise is too difficult for Dad now, but I’m interested to read your updates and will email you shortly.
Your description is sadly fairly typical of the journey. My husband had PSP and he too opted out of a PEG. His appetite diminished over a period of more than a year - some because of the amount of time it took for him to swallow anything (small meals took ages!) and some because the diminished activity just meant that he needed less. We supplemented his diet with thickened shakes, and added powdered nutrient rich supplements to his meals where we could so that even if the volume diminished, we tried to make it as nutrient-dense as possible.
His inability to eat large amounts and the weight loss went on for some time, more than a year, so it's really difficult to predict how long your Dad may still have. In the end, my husband simply didn't get out of bed one day (very unusual behaviour for him), had one last meal in bed and then stopped eating and drinking. Per his wishes, the palliative care doctor kept him comfortable and pain free, and he slowly slipped into a coma about 2 days later, and then passed peacefully nearly 2 weeks later.
During that year or more that he was consistently losing weight, there didn't seem to be much pain or discomfort specifically from that. Discomfort was more from the muscle rigidity, constipation etc, and the occasional urinary tract infection, which you've also mentioned. He definitely began to feel the cold more, and slept more and more, but otherwise didn't seem to have specific changes in his condition.
It's tough to predict exactly how much time your Dad may still have. I would suggest that you get in touch with a palliative care specialist and ensure all end of life questions are asked and answered (rescucitation, medication etc.), which my hubby could answer with thumbs up/thumbs down, and then just keep going as you are. Choking/aspiration, falling and infections are likely the biggest watch-outs at the moment.
Whether the time you have left is long or short, make the most of it.
Sawa - thank you. May I ask, am I understanding correctly that your husband survived for a year after the PEG decision was made. I'm assuming that his overall health picture at the decision stage was similar to how my dad's is now? How far did your husband’s weight fall over that year when his appetite was diminishing? My dad was usually around 13 and a half stone and has dropped around 3 stone in the last year. It’s only really the last few months where his appetite has seriously reduced so I wonder if the weight loss will be steady or may accelerate from this point.
We have been in touch with palliative care and made advance directives as per my reply further above.
My husband made the PEG decision very early on, so survived much longer than a year from that point; probably 5 years+. We did revisit the PEG decision a couple of times over the years, just so he had an opportunity to change his mind when things deteriorated and got a bit more challenging, and each time his decision was the same. In fact, I somehow think that as his condition and quality of life deteriorated, it actually strengthened his resolve to not extend things via a PEG.
We didn't weigh hubby over the years. However, he started out at probably 14 stone, and likely lost 5 stone+ over the nearly 7 years from diagnosis to his eventual passing, with most of the weight loss in the last 12-18 months. He was very skinny at the end.
It's so difficult to compare weight loss rates / time left, as there are just too many variables unfortunately. For example, Hubby stopped talking quite early. His voice also got quieter and quieter before it disappeared altogether, but this was over 3 years before he passed, while other PSP warriors keep talking for much longer. As long as you have the right support and advance directives in place, then don't think too much about what's around the corner, and try to focus on the here and now as much as possible.
Hello, i am so sorry you and your loved ones are enduring this horrible, cruel disease. I read your post and it almost exactly mirrors my mom's situation, even the timeline is identical. She was down to pureed foods as of March this year -- and we had no idea she wasn't getting what she needed and she landed in renal failure that was somehow, reversible. We were forced to make a decision about the PEG tube very quickly - we knew that if we didn't put it in, she would wind up back in renal failure soon enough, a cycle that seemed unnecessarily cruel. We put in the tube and now we are "locked in" as you say. Hard to say whether the right call was made with the PEG, but we were told that if we didn't, it wasn't the choking that was most likely to take her down, it was the dehydration/starvation, and it wouldn't take more than a few weeks, given that she could barely swallow anything at all, even without choking. Feeding her was something that happened all day because it took so long to get anything in her.
My parents never discussed the PEG before my mom became unable to communicate at all. This, in retrospect, was a mistake. We should have been brave enough to confront this possibility and we, as a family, including my mother, were not.
Thank for for your very honest comments. We had an episode a couple of months ago where the doctor told us Dad’s kidneys may be failing and to prepare for the worst. Dad was prescribed antibiotics and thankfully they worked and he lived to fight another day. I do worry about his kidneys though. He takes a lot of medication for other ailments (although this was reduced by his doctor following this episode). I don’t think he gets enough water and his urine is always very dark. You said your mum is now ‘locked in’. May I ask, how does that manifest? Can she see/hear/communicate at all? Does she have the use of her limbs?
Mom is locked in because she can't feed herself at all -- we had hoped to be able to supplement her PEG with regular food, but she can't swallow any more. She can no longer stand, she can barely sit up in a wheelchair...she can sit in one, just not with her head up. Her left arm is pretty much stuck to her side. She sometimes, rarely, lifts her right arm if i ask her to -- but it could take about 2-3 mins for her to actually get the signal to the hand. She cannot communicate in any way, not verbally, no more thumbs up/down... she occasionally will wail, but that doesn't really help us know what is wrong, if there is anything wrong. I think she wails because it is the only way she can verbally get attention, not because anything actually needs fixing.
I am very confident she is miserable. All day and every day, but without her saying she has had enough, we can't do anything except to keep going.
My husband had PSP. When it became difficult for him to talk I would hold his hand and tell him to squeeze my hand. When he responded by squeezing my hand, I would tell him I am going to ask you questions and if the answer is yes please squeeze my hand. I also taught the nurses and aids to do this as well. Numerous times, I would ask him are you in pain, he would squeeze my hand then I would ask him is your pain in your head, if yes he would squeeze my hand. If the pain was not in his head I would move on to another area of the body such as your bottom and if it was his bottom he would squeeze my hand. I could alert the nurse and have pain meds administered. I wish you all the best.
You are lucky that he was able to respond to you. Mom is simply unable to send those signals reliably to her one "good" hand. It used to be a question of giving her enough time to respond, but, alas, we are beyond that.
You mirror exactly where we are with my dad currently. What we have done in the past 2 weeks is get dad to try and "eat" a fortified diet. Yes he chokes all the time, but he keeps on trying. He has 2 "fat shots" (thickened drinks) in the morning and a very high calorie thickened type custard in the afternoons. His weightloss has slowed down but not stopped. Symptoms that have changed alot in the past 6 weeks - sudden weightloss, speech totally unintelligible and so soft, chokes on everything including his own saliva, sleeping alot more, rigidity has seriously taken hold, his face is up to the ceiling, his legs hover in the air and his hands are splayed. Like you, I dont know what's coming. It seems each and everyday brings a new change. I too live 2.5hrs from my dad, but I get there every few days. I know the heartache that alone can bring. Mind yourself at this time. Keep in touch.
Thank you CliDol, I notice most of the symptoms that you have mentioned. He is sleeping a lot more now - I don't think I mentioned that in my original post. His diet is a fruit smoothie in the morning with some scrambled egg. He will eat some of his tray of pureed food in the evening, with a couple of treats in-between. We recently discovered chocolate ganache and cheesecake topping (without the biscuit!) to be a favourite. Full of calories and fat!
Mum also gives him a protein drink.
We do find that he often appears to have swallowed his food only for it then to appear again hours later after a choke - it's almost like it's getting stuck in his cheek.
My dear husband passed in May of this year after 9 years of suffering with PSP. My husband choose not to have a Peg also and for us it was the right decision. My husband was tired of all the suffering and the strain of caring for him physically was becoming unmanageable for me. I thickened all liquids to help prevent aspiration and had to feed him. I was about to start pureed diet when he started declining almost overnight . The decline was such that he really did not want to eat much of anything, so I fed him soft foods as long as he accept food. We did have an aide for several hours a week and that was very helpful. My initial response to your current situation would be to get Hospice order from his Dr and avail yourself and your family of their amazing services and care for your Dad as well as your Mum. Best not to delay with bringing Hospice in as they will help guide you and provide comfort for your Dad. Once food and fluids decrease considerably it is only a matter of time before end of life transition begins. Weight loss was dramatic but he still requested fluids which I gave him with a syringe in small amounts. He became bedridden and passed within two weeks. I am heartbroken and grieving his loss after 53 years of marriage, but he is free and no longer suffering. They journey is not easy, but sounds like your family are working well together to support each other-Your Mom is blessed to have the love and support of her children during this difficult time.
Thanks for your reply ncgardener799. I really understand when you talk about the strain on you as your husband's carer. I have seen how hard it is for my mum to cope. Caring for a sufferer of PSP is relentless. She barely gets a minute to relax as Dad is up and down so frequently, and his impulsiveness means he often tries to stand when she leaves the room. We do have carers morning and evening and occasionally in-between, but I can see she is burned out at times. And that is not to mention the hurt of seeing your life partner fading before your very eyes. I've tried to stay subjective and rational in my words but the pain and heartbreak this cruel disease brings is just unimaginable.
Hi, I’m in a very similar situation to yourself, with my dad, who’s 88 on Saturday officially being diagnosed last year but having had dumpy for some years before. Do you have input from Speech and Language therapist and also a nutritionist? The SALT team gave my dad voice exercises to do which helped and also advice on food - he’s on level 6 currently. He’s also given supplemental nutrition in the form of fortified milk shakes and has cream instead of milk in drinks and cereal to increase his calories. This has stabilised his weight loss. A year ago we collectively made the decision that he needed more support than my mum could provide at home, even with carers coming in, as his mobility was as so poor the carers couldn’t shower him for risk of falls only wash him seated. He was also trying to get up from a chair impulsively and fall as well. He moved into a lovely nursing home and has actually improved in someways, although he has continued to decline in others. The nursing home monitor his swallowing and diet closely so he’s getting enough calories, but he is now totally wheelchair bound, but they transfer him to a shower wheelchair so he can still have a shower. His speech is very poor now too, and although the salt team gave him pictures to help he won’t use them as they’re‘childish’! His mental capacity is still all there. I would agree with what others have said about hospice suppprt - they are excellent for my dad and me and mum too. As others have said, reach out to them sooner than later. Good luck
My sympathy for all you are living through. My Dad died of PSP in April. Your description of your experience to date resonates with me strongly. In August 2022 my Dad had his first choking incident. In retrospect I can see that this marked a major deterioration. By March this year his ability to swallow had gone. He also did not want a PEG. When the end came it was relatively peaceful. He died quietly in his own bed with family in the room. It was still a shock though. Mostly because I hadn't anticipated how close to the end we were. My deepest sympathy to you and all your family. This is such a awful disease.
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