PSP Association
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Hi all you lovely people

We had four days down at youngest daughters house with her and partner and their 4 children (blended family ) . Our eldest daughter also arrived with her three boys , so was able for hubby and I to see all our grandchildren in one space . Bit crowded but hey only for few days . Beds and sleeping bags everywhere .

Whilst there was Halloween ,( more and more Australians embrace it now )

We took the children around to various neighbours , where they collected their booti , one lovely lady was dressed as a witch with the longest crooked nose , our youngest grandson couldn't take hie eyes off it .! She removed the nose and spoke in the broadest English accent , and she thanked the children for coming to her door . Youngest grandson said " Thank you Ma 'lady you are a very nice woman , mayb we will call tomorrow for tea and crumpets "

Well this lady just about cried with laughter, as we all did , you wonder how they come out with these things !! They all had a great night , then the following day was our 2nd grandson birthday 13th a teenager at last , so birthday cake and singing was a lovely few days . Hubby gets so emotional and tries so hard to keep his smile up but not able , so the tears were there again , grandchildren used to seeing this side of their grandad now so a little easier for them to deal with .

We've been home just a day and he says he feels really tired , and he looks quite pale , so has slept on and off today . Off to the continence clinic tomorrow to see nurse , she trying to persuade hubby to try catheter cause he not emptying bladder properly . Whilst travelling home from family we stopped for wees 5 times in 1hr , just little drops , by evening he had settled down again Is this psp or because age , enlarged prostrate . ?

Love to you all Chris 😘🌈🌻

10 Replies

It's so good to hear how folk can still have a great time even with PSP. Thanks for sharing your story. I laughed when I read about the tea and crumpets. Perhaps a new friendship will blossom.

My husband had the same symptoms as yours. Tying to wee but without success many times in quick succession. Night time was a nightmare, up and down all night. I was advised by someone on this site not to presume it was PSP and take him to the doctor. I did and after tests an enlarged prostate was diagnosed. He is taking daily Tamsulosin and things have improved. They did say there may be something more sinister causing the enlargement but as the tests would be more invasive than the others he had, it wasn't worth putting him through it. The specialist was having a job to say what he wanted so when C went out with two nurses to empty his bladder I said, "Are you trying to say the PSP will kill him before the cancer will if he has it". He thanked me for making it easier for him and said, yes it would. I had to agree that I didn't want any further investigations to take place and explain it to C when he came back so he could agree as well.

I know so many men with an enlarged prostates. My dad was diagnosed with prostate cancer in his early 80s and lived til a month off his 97th birthday.

I hope the continence clinic can sort things out or refer him to someone who can. It must be so uncomfortable wanting to go but not being able to.


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Hi NannaB ,

Hubby has been to urologist who says can't prescribe pills because having psp can cause him to slow his wees down too much and cause all sorts of trouble , no operation either cause can create incontinence , so catheter only solution . So they sent a nurse to the house to discuss it all , she filled out forms for Medicare who fund us money towards buying them , now we have appointment to see nurse at the clinic tomorrow , I think mayb to show how to insert . Hubby had been prescribed meds for his wee problem from his psp specialist but made the complaint worse so had to come off them . His prob is mostly through the day , night time leaves his bed about twice a night . He says they are wasting their time because he ain't going to use them ! We will c after tomorrow



I can understand him not wanting a catheter. They usually have to be inserted by medical staff so perhaps the one he is having is different. C wears an external sheath which is attached to a bag strapped to his leg so he can urinate whenever he wants to, day or night and I have to empty the bag. No more rushing to toilets and car journeys are uninterrupted. I hope your hubby gets used to whatever he is given.



Hi Chris, I agree with NannaB, it's probably all three!!! Old age is such fun isn't it!!! Get him to the doctors! I know, more pills. Getting rid of bodily fluids should be banned, I say, perhaps we ought to take it up with our governments to make it law, our lives would improve overnight!!!!

Lots of love



Hi heady , just explained to NannaB

Hubby has been on pills prescribed by his psp specialit made the prob worse . Was sent to urologist who says pills could make it so he doesn't pee enough , operation could cause incontience ,, so catheter only way to go . Daytime is the worse time for him ,nights only up about twice a night , so hubby feels he doesn't need catheter . We go to see nurse tomorrow so will see !

Nite nite bed time in oz

Love Chris X


Hi Chris thanks for the family funny. Cannot comment on incontenance and prostate as M bring a lady does not have the dreaded Prostate that's my future problem hopefully many years. The catheter issue though is one our nurses are trying to force but M does not want it and luckily the pads work well only occasionally leaking now we have the right size. I know men are different but has you man tried the men's pads yet before putting him through the catheter pain and exposure to more UTI's?

Best wishes and hope the lad got some proper booty Tim


Yes to all the latter half of your message! B is on Tamsilouson however he still has to stand and wait! It's helped quite abit though , I'ms sure. Dr says his prostate is not enlarged and he is only 55 so age not much of a factor I'm going to blame B's pee on PSPeepee .haha

To the former part of your letter, I read it to B and it mad him smile! We have only one "grandson" and he came as a wedding gift to my kids in that the sister of my sons wife dropped the boy off a couple months after they got married! blended families, indeed.

Luckily, the newlyweds make great parents, to whoevers kids!hahah. But like I've said before this young lad is a blessing as it may be the only opportunity for B to be a grandpa!

So Halloween is becoming a multinational holiday...Does the UK have Halloween?

I gave as much candy to adults as I did children this Halloween...including my own who dressed up for a party! I told B we should "dress up" his scars for a Frankenstein effect haha



Sounds like you had a ball with the family, great to have such fun. The 'weeing problem" is beginning to be a problem for Ben now, he actually wet himself the other day, changed his clothes and carried on as normal. When I tackles him about it he totally denied that he had had an accident. There's pride for you! Xx


That's just how it started with my guy. Took a couple of years after that first accident for it to become a chronic problem. The pride really gets in the way, but can't blame him for it.

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What a lovely family gathering, and what fun with the kids! Team and crumpets! You have made me smile here in the dead of night. Thanks, Chris! Funny that Halloween should have spread so. Glad it made for such a good time for you!


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