PSP and urinary retention

[ncgardener799]

My husband is experiencing episodes of urinary retention , even though his 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. He has had PSP for over 8 years now, still ambulatory with walker and assistance. Anyone else experiencing this or have any advise? Thanks!

[Martina_MP]

Try rubbing his lower back or buttocks when he is trying to go, perhaps with a warm compress, to help get things going. For my mom, we use a hand bidet, basically a squirt bottle, with warmish water, and squirt a stream on her backside and that will often get things going.

The other possibility is that your husband is having problems due to an enlarged prostrate, a common issue with older men in general, which you can discuss with his primary doc or a urologist.

[ncgardener799 in reply to Martina_MP]

We have an appointment with his urologist in a few weeks. His PSP neurologist said that incontinence is expected in PSP patients, but not usually retention. I will try your suggestions. Thank you!

[OllieFisher1]

at the nursing home, the staff use the urine bottle near the sink and they turn the tap on. Apprarently the sound of the water running triggers something.

[timbowPSP in reply to OllieFisher1]

Yes, it has a remarkable effect ..... the sound of running water opens up the sphincter muscle. Now 80, I need to have a pee before turning the taps on to wash up! And at uni we planned to broadcast out to the campus from central bell tower what we called the 'sphincter melody' .... a special tune that will cause the main two sphincters to open up ... one to pee, other to poo!! ..... should cause real havoc with students and all 😂 Timbow.

[ncgardener799 in reply to timbowPSP]

Timbow , That is so funny!!!! Thanks 😀

[LuisRodicioRodicio in reply to ncgardener799]

👍😂😂

[LFG3]

Hello,

Actually 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. My husband had an office procedure called Rezuum to open the channel. Still had all the above problems. He 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. Hope this helps!!

[ncgardener799]

Very helpful, thank you so much!! Did you husband ever take any medication for neurogenic bladder? How are things going with the indwelling catheter-any UTI'S?

[LFG3]

Hi,

No we weren't given any 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 and my father 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. He is just getting over his first infection. Turns out it was just an infection at the tip, not a full blown UTI, with just a discharge and low intermittent fever. He did just fine, but I'm told to expect 1-2 UTIs a year. I'm pretty sure this infection was caused by poor technique by the home health RN who changed his catheter. From now on I'm going to intervene if they aren't doing a good clean with the iodine before inserting a new catheter. The indwelling catheter has been a life saver for me (us). He was getting me up 3x a night to pee plus 11 more times during the day. I was beyond exhausted. Now we get to sleep 11 hours undisturbed. Makes a world of difference!

[ncgardener799]

Thank you so much for the detailed information. We have some testing scheduled to determine possible causes. Is your husband still ambulatory and would you mind sharing how long he has had PSP?

[LFG3]

Hi,

We are in year 5 of PSP. No, he is no longer ambulatory. He was using a walker around the house until Aug of this year, with me hanging onto him. I prevented many falls. We decided to quit the walker because after one near fall, I tweaked my back keeping him upright. We then went to a medical transport chair that I use to move him around the house. I.e. from bed to recliner chair, from recliner up to table to eat, to bathroom to empty catheter or to shower, brush teeth, etc. It fits through all doorways. I use a regular, lightweight wheelchair for any trips out of the house including Dr appts.

[LFG3]

Bought this on Amazon.

Bought it on Amazon

[ncgardener799]

Thank you again!! We are in year 8 and still using walker most of the time, transport wheelchair in evening as he is very tired by then . He has had many falls and is very impulsive and does not always wait for assistance. I see you are in the US, I am also. North Carolina for 23 years , NJ before that. Thanks again for all you input.

[LFG3]

Hi,

Have you looked into the variants of PSP? The Parkinson's variant (PSP-P) progresses much slower than the classic type (Richardson's) which I believe my husband has. And yes, I'm in US. Lenoir city, TN. Just outside of Knoxville. Have you ever seen the Smartpatients.com PSP support board? It's just like this support board but mostly US people.

[ncgardener799]

Neurologist seems to think it is the classic Richardson's . I have been experiencing problems with the Smart Patient site lately. Figuring out why is on my to do list 😀