A new experience for us this week. My wife suffered urinary retention for the first time and it went on for 14 hours before a combination of Paramedics and Hospice nurses finally fitted a catheter. Subsequently it looks as she didn't have a UTI. She has suffered some previously.
My question is this a normal thing to be caused by PSP. Is it likely to repeat it self?
We have to decide whether we want to retain the catheter. My wife has not suffered much with daytime incontinence but we do have somenightime occurrences .
Would appreciate if I can gain from others experience.
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Wombatz
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Hi, urinary issues are common and varied with psp as brain signals to bladder are damaged, although reduced mobility can impact - incontinence, retention, sudden urge or needing to go and then finding not able to do so. From reading some people suffer from one issue and others from multiple issues at same time or issues that vary over time. My husband has been suffering from urinary retention which appeared to be worsening with longer period without urinating 12 hrs, 16hrs, 20 hrs then at other times it can be every few hours.At this point we were advised by neuro nurse and gp at 20 hrs start to worry and 24hrs act by getting district nurse to action a one off catheter drain. Each time we have been hovering around these times husband has then passed urine successfully. Husband was checked for underlying issues, eg infection, prostrate, cancer etc but all clear and was referred to Urology. In advance of appt (actually tomorrow) they carried out a urine flow test which was unsuccessful and ultrasound to check for retention which showed retention. Currently there are a few incontinence issues mainly from sudden urge/ not enough time to get to loo but no pain, no swelling and husband doesn't seem in discomfort. As there is no infection (tested a number of times), no pain or worry from husband we are seeing urologist mainly to see if there is anything we can do to help the situation currently, get clear advice and direction of when urgent action required and to look at what might be needed in future, catheter options - I believe there are different options etc so we can use a planned approach rather than emergency /sudden catheter with no going back. We are keen not to rush to catheter as this can bring its own issues such as infections, the regular administration, handling and care required to be actioned by carers at home and importantly dignity and mental health considerations of the individual. X
We are literally having the same issue, I’ve asked for a referral to the continence team. Mum wants to go but can’t sometimes for long periods of time.
Hi, our experience of continence nurse has been positive but limited. They are generally good at suggesting management techniques on toilet visit frequency etc ......although the tap running suggestion doesn't seem to work on my husband... only on me whilst I waiting fir him to go , diet and hydration and can make suggestions and observations about impact of medication and things to discuss/ raise with gp all of which has in our experience been helpful, They xan advise on catheter types and timing eg in our situation she advised sheath not suitable for future and said not to rush towards catheter .. Their main focus does though does seem to be on identifying and providing the right continence products- pants, pads etc....we get a supply 3 monthly and they are free. Surprisingly they are more effective than I expected and do take away some of the worry if going out and accidents occur and as needs change different products can be tested and provided I do though find any help is focused on someone's specialism eg bowel and bladder, SALT, ot etc and they generally look at a specific symptom in isolation and not in the context of a complex condition eg a fall can precipitate bowel and bladder or say mobility or cognition issues, things xan deteriorate ir sometimes improve and its in these situations I still have many questions that there seems to be nobody there to answer x
As a further update...in case the info is useful to anyone. We saw the urologist today. Husbands main issues were urine retention and some incontinence issues. He was excellent and explained 4 options - 1. intermittent catheter which you use 2 x day in and out so to speak which would be done by the individual or care giver at home (after training), 2. Indwelling catheter -put in by DN, stays in and daily care by care giver and maintenance (best word I can think of) every 3 mths I think by District Nurse, 3 Superpubic catheter op under general anesthetic in stomach area forgot how this is maintained but think hospital involved and importantly no 4 Do Nothing for now...don't rush it and this was his recommendation Again importantly he said if there is no infection, no blood and no pain he would avoid catheter for now. He also advised with many people WITHOUT PSP, the bladder muscles expand and put pressure on kidneys. In PSP * and he seemed to know quite a lot about it the bladder muscles work in different way and don't put pressure on kidneys so don't damage them. He said as long as psp patient isn't in discomfort, no infection symptoms, no blood its OK if urine output gaps are long it will happen as brain message gets through . .a day or 2.ok If you get to day 3 then you would take action We are often at 12, 15,and sometimes 20hrs and he said that's OK as long as husband OK. He did also explain jumping to a catheter can bring other risks, infection, discomfort and for those with tremors and constant fidgeting risk of removal/ damage. We are going to take his advice and stay with status quo until things change for both avoidance of infection risks but also view of husband and his preference/ dignity. The consultant is following up with a detailed letter of the options and what was discussed fir potential future use I recognise others may decide on different course of action Hope this is useful
PSP presents episodes of urinary retention, even though the patient is drinking plenty of fluids. Seems to be one extreme or the other, complete urinary incontinence or retention of urine for 5 to 7 hours.
OllieFisher1 indicates that in the nursing home, the staff use the urine bottle near the sink and they turn the tap on. Apparently, the sound of the water running triggers something.
LFG3 provide the following information:
Currently urinary retention, urine hesitancy (hard to start the flow), and urinary frequency are all common problems with PSP when the patient develops a Neurogenic bladder. That's when the signal from the brain to the bladder gets messed up from the brain degeneration. Of course, check out the enlarged prostate possibility first, but then go back to dealing with the Neurogenic bladder once you know the urethra is open through the prostate. The patient had an office procedure called Rezuum to open the channel. The patient is now in an indwelling catheter, mostly due to the urinary frequency problem which comes from not emptying the bladder, so always feeling the need to go. Your urologist will know about Neurogenic bladders, so you can ask him more about it.
There is not till now a medicine for the Neurogenic bladder because it's a problem with the brain signal to the bladder. It is a common condition in people who are paralyzed as the people with Alzheimer's was also diagnosed with it. They often do a urinary dynamic test, which is actually a battery of tests on the bladder functions, before the Neurogenic bladder is diagnosed. It´s important to do a good clean with the iodine before inserting a new catheter. The indwelling catheter has been a life saver. The patient was getting me up 3x a night to pee plus 11 more times during the day. The caregiver can become beyond exhausted.
My mom suffered urinary retention also and had to have hospice nurse place catheter twice. She knew she had to go but I think her brain couldn’t send the signals.
Unfortunately my mom lost her battle with PSP last Tuesday morning. Her main symptoms that she battled was loss of speech, eyes closed almost completely, lost ability to walk and swallow last two weeks. We tried since February of this year to get her in with a neurologist but there were none available until July, 2025 and that was out of state. I hope some day there is better research and therapy along with a cure for this horrible, debilitating disease. I thank everyone on this website for input and help. 💔
I'm so sorry to hear of your loss. We all hope for better diagnosis, treatment and a future cure for this devastating condition. Sending warm thoughts of peace and comfort 🫂💜
I’ve felt very alone until finding this group, it’s giving me some comfort that I can share my experiences and people understand vs just thinking dad is old - he’s only 81.
My dad was catheterised in Feb 2024 after being rushed to hospital with retention. That’s the last time he got out of bed and was in anyway mobile. He was left on a hospital corridor for 3 days … I won’t go into that now.
This was one of those times we went into crisis mode, I don’t like to think back to much about it to be honest.
He had had problems for months, my mum who is his primary carer told me and my brother much later on.
Jeez Harshacceptance !! The whole experience with the neurodegenerative illnesses like your Dad's CBD (and my sister's PSP), typically become so much more of a nightmare ; ( like insult added to injury! ) when hospital intervention is needed. Those encounters stand out in my mind as some of the worst ! One of my most fervrent wishes is that I'll never have to put my sister through another hospital visit ! I'm always grateful for any necessary helpful intervention, but as we know, having to go to the hospital is bad enough on any day, let alone when the patient's ability to move , communicate, etc... is impaired !
Wishing for people in positions of authority to make necessary changes up and down our entire healthcare system ! Respect , caring , and compassion should be reality not false claims. Until that future time comes, maybe you can have directives put in place that any caregivers involved notify you of negative changes or emergencies that arise with your Dad. Discuss the importance of having the most effective plans of action in place when medical intervention is needed. Maybe there is more than one hospital available and one where delivery of care is better than another. I do know that having someone with the patient, who can be an effective well spoken advocate can make a big difference . Are Hospice services an option for your Dad ? All of this is more difgicult if you or your brother don't live near your parents.
I'm hoping that ways can be found to improve healthcare for your Dad .
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, diet and hydration and can make suggestions and observations about impact of medication and things to discuss/ raise with gp all of which has in our experience been helpful, They xan advise on catheter types and timing eg in our situation she advised sheath not suitable for future and said not to rush towards catheter .. Their main focus does though does seem to be on identifying and providing the right continence products- pants, pads etc....we get a supply 3 monthly and they are free. Surprisingly they are more effective than I expected and do take away some of the worry if going out and accidents occur and as needs change different products can be tested and provided I do though find any help is focused on someone's specialism eg bowel and bladder, SALT, ot etc and they generally look at a specific symptom in isolation and not in the context of a complex condition eg a fall can precipitate bowel and bladder or say mobility or cognition issues, things xan deteriorate ir sometimes improve and its in these situations I still have many questions that there seems to be nobody there to answer x
My wife has PSP and there may not be a cure for PSP, but there is a drug that slows the progression
George 
To have a peg or not
Chris 
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