Frequent Toilet Trips

[Darlingtonian]

My husband, aged 72, was diagnosed in 2023 after five years of difficulties. He needs to go to the loo every hour or so. Is this normal for PSP sufferers?

[easterncedar]

I am sorry, yes, the toilet routine disruption is very common. Catheters are sometimes called for. It is likely to become a serious problem. We started with bottles and worked our way up through various more invasive responses.

You might want to have his prostate checked, or his urine for infection. Either could cause frequent urination and can be treated.

[SEADIVER]

Hi there. My wife has had PSP since 2019, but laterley she has needed to go to the loo upto fifteen times during the night. The parkinson nurse suggested "Betmiga 25mg tablets" to be prescribed by your GP".This worked well and we were down to five times during the night . We are now on 50mg and the night sleep is great . Hope this helps.

[Newstead1]

my husband also 73 and has PSP and also keeps going to the loo day and night. The doctor prescribed mirabegron. It’s helped a little but he still goes quite a lot.

[LuisRodicioRodicio]

Hi Darlingtonian!

These are our information and experiences about incontinence on PSP patients:

"Martina_MP and Kayelless" provide these comments about incontinence:

This development is very common. Not to worry; it’s manageable. Yes as Kayelless says, get a supply of the larger washable pads (such as 34”x36”) and put one on top of the sheets. I actually put a disposable underpad on top of that. So then you only have to change the pads and not the whole bed. Also use thicker pull-up underwear (or diaper) at night; Tena Overnight is very good absorbance, plus put a “booster pad” inside. The booster pad adds absorbance but allows liquid to flow through to let the pull-up padding absorb also. We have tried several and I think TotalDry Maximum Boost ups (in the US) are good. I don’t know what they have in UK but apparently they are called nappy booster pads there. You can get smaller washable under pads, seat size, for your recliner and wherever else you habitually sit.

Nightgowns might be easier to manage than pajamas.

“Happyme2” point out: See if you can get the large blue bed protectors that are used in the hospital to cover the bed sheets. There is also a "uro dome" , this fits over the penis and is connected to a urine collection bag that can be used at night so that the need to get up to go to the toilet is eliminated. You may need to upgrade to a more absorbent nappy or pants for your husband.

“David 750” indicates: I agree with Happyme2, bed protectors called Kylies (get on Amazon) with wings that tuck under the mattress to keep in place under his bottom (very absorbant), to save washing sheets. I used these for my wife.

“AnneandChris” had this experience: We had a wonderful hospitalary team working with us who got him to use a Conveen, an external catheter with small, bag which can be emptied during the day and a larger one for overnight. This was prescribed for him and saved numerous falls and considerably reduced accidents.

“softiesimon” point out: Avoid catheters if possible as urine infections are then more likely.

Hope this help.

Hug and luck.

Luis

[LFG3]

Hello,

Yes, urinary problems are very common with PSP. It is wise to have him checked for an enlarged prostate and urinary tract infection first. If those are clear, our Urologist called it Neurogenic Bladder. Which basically means there is a bad signal from the brain to the bladder. Problems may include, urinary hesitancy (inability to start the flow), urinary retention (residual urine held in the bladder after voiding), and urinary frequency (urgency to go frequently). Condom catheters can be used, quick In/Out catheters can be used, or in our case we went with a indwelling Foley catheter. Best of luck to you both on this most difficult journey. ❤️

[Bergenser]

Agree with all the above - make sure the GP checks for any non-neurological causes. My husband was doing "little &often" with high urgency and typically every hour through the night - once we had ruled out other causes he was given Tamsulosin which as I understand it relaxes the bladder so that he can hold more and go more comfortably. Now it can be every few hours in the day and 1-2 times a night, which leaves us both with better sleep and better days. I expect it to get worse over time however the improvement has lasted more than half a year, and the Conveen supplies, which was the next option, are still in the box. Best wishes 🌻🫂

[Cianodude]

we went through this with my mum also. Gp prescribed Betmiga and she was always on 50mgs. She also wore pull ups in case of accidents. The betmiga did help. She did one stage wear patches can’t remember the name but it holds onto the urine so you don’t go as much but stopped them as she didn’t go it was the opposite affect

[timbowPSP]

Dont think there's any 'norm'with PSP. I am 82 diag 6yrs ago, and up at night 6 to 15 times for bottle pee. Size of bladder prob affected by oversize prostate, They seemed reluctant to operqte with PSP.😗