Urinary incontinence in PSP

[Ruth1921]

I’m worried about my husband’s sudden lack of bladder control. He seems not to be able to control when or how he urinates and I am constantly cleaning the bathroom floor to prevent smells. Is this common in PSP (about four years into the disease)? He wears incontinence pants but fills them quickly and then urinates all down his legs and on to the floor - almost anywhere anytime, which can be very embarrassing for him (and me).

[doglington]

Yes. Afraid so.

The solution is to wear a convene. It's a sort of condom, with a tube and a bag.

Next step would be a catheter. We managed with the convene. The main problem for me was that he tended to pull it off. We never found a solution to that as he didn't know why he did it and couldn't stop himself.

I'm afraid it's part of the PSP game.

Good luck

Jean x

[Tippyleaf]

Sorry this is part of PSP But there are things that help for periods of time. My hubby now takes 3 different meds for his bladder Each worked really well for around 9 months but then you have to add something else into the cocktail. This year he had 12 weekly sessions of tibial nerve stimulation ( Accupuncture) prescribed by a Neuro urologist now he has a top up every 6 weeks and this works reasonably well . He has gone from peeing every hour to every 3-4 but he still has no control - 30 Sec’s before he is incontinent. So as Jean suggested a convene works well for going out and prevents those embarrassing and difficult to manage leaks - unless of course he undoes the bag or removes the convene!!

So no perfect solution but ask for a referral to a Neuro Urologist who can help.

Love Tippy xxx

[Marie_14]

Convene's worked really well for my husband. He used them at night to start with so no wet beds. Later we used them during the day too. It was only towards the end of his life that he started to pull them off. He was bed bound by then. So ask your GP or nurse for an appointment with the continence nurse. Good luck.

Marie x

[Karynleitner]

With my husband urinary incontinence was one of his first symptoms. We went to a urinologist and even underwent a surgery with no success. He wore incontnence briefs that we added pads to for about 18 months. Now we use a convene at night and the briefs and pads with an additional MANHOOD pouch during the day . If you are in the US they are available on Amazon.

His skin is tender and cannot take either all day and night .By morning the condom catheter is causing soreness . After all day with the pads he has swelling . The good news is the pouches are very easy and quick to change making it easier to keep him dry. Not perfect , but it is working OK.

Best of luck .

Karyn

[cameoboy11]

Hí sorry to hear that. I have been diagnosed with CBD and have some bladder issues. I have no idea how long i have had this horrible disease. I am losing

mobility quite rapidly especially re left side and fall a lot .Jo x

[pandyjohn in reply to cameoboy11]

Sorry to hear about your CBD. I was diagnosed with PSP in October and use this website to find what lies in store for me.

[rnpacu in reply to pandyjohn]

I was dignosed in August 2018. And also have learned so much from everyone on this site. thank you everyone.Take one day at a time.

Maria Elena

[Heady]

I am sorry to say this is a huge part of PSP. This may sound drastic, but this is one fight you can't win. Accept that you need help. Pads can help for a while. Convenes work for some. My life and Steve's comfort improved enormously, when he had a Catether fitted. We were able to go out again, free from worry. Falls were cut down, no dashing for the loo. The bathroom floor was saved from its hourly scrub. I know they come with an infection risk and yes Steve did end up in hospital with a few ITU's, but there is always going to be that risk, which ever road you chose.

As others have said, get the professionals involved and don't take no for an answer. Tell THEM, what you need!

Sending big hug and much love

Lots of love

Anne

[grafixapn]

Many doctors will suggest a catheter which will impact his manhood. There's a device that can be implanted under his skin that can tell the brain when to use the bathroom. Some doctors will tell you that the device shouldn't be used by those with a neurological disorder, but you can insist that they do a test. For more info on this device please go to my local PSP support group's website. The site never asks for money, it just contains information for those with PSP. The website address is: supportpsp.com

My name is Andy, and I take care of the website. My wife also has PSP, and we had a fight with her doctor because he never gave my wife the option of using this device. I only learned about it from another member of our group, who has PSP and is doing great with the device.

Please don't be forced into using a catheter. The device will proide all the help your husband needs. Once a catheter is used, the bladder will shrink, and when that happens, the only option your husband will have is to always use a catheter.

If the testing of the device doesn't work, then the catheter is your only option. It's worth trying testing the device, the worst that can happen is it doesn't work, but if it does, both you and your husband will be happier. Only if the test works will they place the device under his skin.

Andy

[Nanny857]

Hi Ruth, we were in a similar position. W wasn't getting to toilet in time on his own, so like you I was constantly cleaning too. GP put him onTamsulosin, Urologist added Mirabegron and none helped. Neurologist added Desmopressin and still no improvement. At Urologist today and he said W has an over active bladder, nothing to do with the brain sending a signal and has recommended BOTOX injections into bladder. Says it should last for 9 mths. So roll on Jan/Feb when he gets it. Maybe you could discuss this with your urologist. Willpost on how W gets on.

Best wishes xx

[Tttp]

Hi Ruth yes incontinence is a big part of psp, my brother is in his 8th of this dreaded disease, he is in depends also we have guard pads we put in front they are very adsorbent with no leaks what so ever. Take care Nettie