Margaret was diagnosed with PSP 3 years ago and has now limited mobility, unable to stand or walk unaided but our main difficulty is she has the urge to go up to 18 times daily and often up to ten times from her bed when I have to assist her. She is continent but never sleeps for more than a couple of hours before needing to visit the loo. We have wonderful help from our neurology nurse and care team who all visit here at home but this has us all stumped. Peter, a tired carer.
Has anyone experience of controlling far t... - PSP Association
Has anyone experience of controlling far too frequent bladder emptying?
Written by
toyota11
To view profiles and participate in discussions please or .
41 Replies
•
Dear toyota11
Oh how I relate to this. My husband was also diagnosed three years ago, but looking back the condition had been coming on since 2006. He is fixated with going up and down to the toilet on a regular basis ALL day long that for the carer and me it is an exhausting business.
In the beginning of this disease he had so many falls getting out of bed
during the night to go to the toilet I just despaired. Then I found conveens for him which he now uses 24 hours a day so we have stopped all of that. I do not know if there is a female version of the conveens (check out Charter Healthcare).
However as we know, PSP, can make the sufferer constipated and that's what we have to deal with now on a daily basis.
I do feel for my husband because constipation, on top of everything else, is not much fun. You would think that the good old NHS could help, but like everything else with them, it's all or nothing and again, like most things, we get on and deal with it ourselves.
Sorry, it has been another day and now I am chilling with a glass of wine, reminds me of when the kids were babies!!!
Peace and love
Dorothy T
Hi
I feel 4 u both,!
I,have PSP and have sonre help from the continence nurse re getting Tothe toilet on time I use pads around theclock and also take,meds at bedtime yo cutdown the visits y to the loo during hthe night, lol Jill xx
• in reply todorothy-thompson
Lactulose can be bought from your chemist a large bottle is around £5 and works really well softening the stools. Just so much better than the other remedies. It is a sweet liquid -I take it myself after a gynae op so I can speak from experience that it is good.
Hi Jillanf6
How are you, so nice to see you on the blog again,have missed you and was wondering about you only the other day, along with Ray Whiffen, he's another blogger I haven't heard for a long time !
keep strong and all the best
Dorothy T
keep
For what it's worth, Trospium is what the urologist prescribed for frequent urination for my guy, because it doesn't cross the blood/brain barrier, and should have fewer side effects - like confusion, obviously a problem for psp patients - than other, cheaper meds, like datrol (detrol?). It works by relaxing the bladder muscles, so that the bladder holds more and the urge to go is less frequent, or so we were told. Unfortunately, he's insufficiently in control for me to be able to say whether it does what it's supposed to.
Hi Toyota 11. I can certainly relate. My wife was diagnosed 2 years ago but it probably goes back 5 or 6 years. She goes to the toilet numerous times during the day but she is taking a med at bedtime that gets her through to about 6:00 AM. She does use pads 24 hours a day. Luckily for me she can get around with her walker. Out of curiosity how is Margaret's swallowing, coughing and verbal communication? Take care and look after yourself as well.
Hi Manitoba, Thanks for your interest. Her speech is slurred and she has the usual difficulty in finding the right words, my deafness doesn't help .Her swallowing and coughing are almost normal, she enjoys my cooking!!! Seeing the Bladder nurse today so will mention this blog. Peter.
Where do u live Toyota we have just managed to get on touch with a parks nurse , hopefully she will do house visits we live in Wales uk
Hi, We are in East Yorkshire UK. We have great support but no real answer to the bladder frequency, any one using sleeping pills?
hi cabbage cottage,
where in wales do you live - as we are planning ti live in or near pembrokeshire when we sell our house here in france
• in reply toshasha
Hi, Shasha and Cabbage Cottage, My father was first taken ill whilst living just across the border from Pembrokshire , in Ceredigion, near Cardigan. I can only tell you that where we were it appeared that no one had even heard of PSP or of anything else except Parkinson's and Altzhiemer's. We were in a very rural setting. In fact they did not have a neurologist available and we first saw a locum, visiting , young Australian who said Dad was a classic example of Polymyalgia Rheumatica and put him on steroids. Naturally it did nothing for him at all and we had a heck of a job getting him off them. So, good luck if you move to Wales, I say, and check out what services are available when you do actually move.
Hello Shasha I think we have spoken about you coming back to Wales to live before . We live Nr Newport S Wales . the hospital we go to is St Wooloos . The consultant who we had been under retire last Xmas along with the GP who had been supporting my husband but had included me .
The last few I have felt very much left to our own devices but this week e mailed our local Parkinsins Uk support officer . She is on the our case and is arranging for us to have a Parkinson's nurse who is new to the area and supposed to excellent she has already rung me . and arranged for an assessor to come to assess the access to out home we have some steps ., He came today . I don't feel so stressed now to how we will manage to get to the appointments at the hospital . Have been having dreadful problems with the care company thata we had been introduced to through our social services , have had 39 different ones in 4 months . Although the carers are mostly very nice it's not nice knowing which ones might be coming throug our doors day and night . I only need help to get him in and out of bed . The OT had been good and put lots of things in place to make things easier for me to mange looking after my husband . They do their best but as I am sure you will in dear stand nothing is perfect by any means .
We are luckier in Wales with the charges we have to pay , much better than in England . .
If I can help with anything Shasha jus message me
THANK YOU SO MUCH CABBAGE COTTAGE - I WIL KEEP IN TOUCH ,
• in reply toshasha
Hi again Shasha, I have just seen Cabbage Cottage's reply to you. Our experience of the home help service was much the same as hers. Not particularly wonderful! Regarding funding, that was a disgrace. At the end I had two parents both seriously ill. They were up there and me in London. I quickly got my house organised and after 5 weeks in a nursing home up there I had them in hospital beds in my front room. Dad had to go into hospital within the week and my mother about 6 weeks after. Waltham Forest was now the responsible authority and the hospital wanted them both out into a nursing home. They did not know what exactly was wrong with Dad but he could do very little, totally bed bound and needing to be fed. He was awarded Continuing Care funding immediately but for my mother they said that she had been so sick coming from Wales that they were going to apply to them for her funding. They were going to charge me nothing until sorted out. I had applied several times for the funding for Mum as she was in a really pathetic state, even went through an appeal. She was refused on the grounds that she ' was stable'. She died 13 days after leaving hospital. She was 99 years old. We are now attempting to claim money back from Ceredigion as they were wrong, obviously, and my parents between them have paid in over 120 years into the NHS. I do think that if my parents had been born in the village, did not own property and had never gone to London, that rich place, to earn their living, saved and 'made their fortune' - according to the locals, and of course the nurses, assessors etc are often related to every one else, they would have been considered more sympathetically. Perhaps you will be OK if you are from the area originally, My Mum was from North Wales and that certainly did not help at all. The drain on us, in particular to my father was enormous and he cared for her until he dropped, fell, for one last time and could not get up. He never walked again. Are you sure you want to come back? I have a friend living in France and she finds health care there pretty good. Perhaps you should thoroughly check that out. Perhaps you have and who am I to know anything? However, this was our experience.
shasha• in reply to
THANK YOU VERY MUCH FOR YOUR THOUGHTFUL COMMENTS - WE HAVE SERIOUSLY THOUGHT ABOUT STAYING IN FRANCE BUT IT IS JUST TOO DIFFICULT WITH THE LANGUAGE DIFFICULTIES AND MY HUSBAND LONGS TO BE BACK IN THE UK AND HE SPEAKS GOOD FRENCH !! NOT LIKE ME WHO DESPITE TRYING VERY HARD DOES NOT IMPROVE AT ALL !!
Hello Agian Shasha . Plan B !!!!
Last
weekend I did something I should have done when we were first diagnosed ! After all it is we isn't it !
We have subscribing to Parkinson's UK and received their magazine quarterly .
I decided to E Mail the Parkinson's UK support officer for our area .
I explained to position we were now in and how I felt I was on my own trying to support my husband .
She answered me the next morning by telephone and arranged a home visit ,
It seems that they have recently employed a second Parkinson's nurse for our our area , they now have a replacement Dr for the PARKINSONS CLINIC .
she arranged for the ambulance Dept to send someone out to assess how they would get him in and out of the house to make appointments . He came the next day . We have a hospital appointment now it's December 6th . Social services also rang I had been trying to get a call from them for about two months and the care company rang to say they will give me an earlier slot in the morning to get John out of bed . .
I am now expecting a call from the OT and social services .
she certainly has more power thAn I .have .
I e mailed her again to thank her and told her what a difference she has made already and she asked if I was willing for her to show my e mails at their next meeting . That's all happened since I first replied to you Shasha .
There are systems but it's finding your way around them , at the same time having the energy to arrange it all .
Hope this has put a different light on things .
by the way patently even if you have some savings in Wales the most anyone has to pay is £50 a month. it's not tat wy in E,Nagaland .
HOW MARVELLOUS !! I AM JUST SO PLEASED TO HEAR YOU ARE AT ;LAST IN THE SYSTEM WELL DONE YOU AND WELL DIONE PARKINSONS UK !!!
how did your appt go on the 6th dec ?
shasha• in reply to
I AM SO SORRY THAT YOU AND YOUR PARENTS HAVE BBEEN TREATED SO BADLY IT DOES MAKE ME THINK ANS I WILL GET MY HUSBAND TO READ BOTH YOUR COMMENTS
• in reply toshasha
Dear Shasha, It was our experience that all Social Care was means tested once one had savings above a certain amount, I think it was £12,000, it could have been £8,000 in 2005 and my parents certainly paid more than £50 a week. You must check out the rules now and find out about a 'carers allowance' for yourself. Continuing Care of course is not means tested but you have to be almost dead to get it as shown on a program on TV some months ago. We were very lucky here in London. Just do all your homework first! We did not have a Parkinson's nurse up there but no medic had the experience to recognize it even. One carer who came to feed and change my mother said to me, of my father , who was just beginning to have difficulty feeding himself and needed a little help to finish a meal, that he was jealous of all the attention my mother was having and that was why he was becoming a bit demanding. I could not really believe that of Dad as he had devoted so many years of care to Mum, but I am ashamed to say, the 'penny did not drop' for me to indicate that he was in fact suffering from a neurological condition too. Poor Dad I had after all called in the local GP, expressing my thoughts of Parkinson's but it was firmly dismissed.
Perhaps you could contact the PSPA to see if they could advise where there is full recognition of the disease and good care. I do understand your husband's wish to return home, but be careful! Also the travelling distance to hospital can be a problem as hospitals are quite far from some rural areas etc. If you want to do an exploratory trip and need a base, I have a very good friend, of over thirty years, who runs a very reasonably priced guest house in Newport, where I know you would be made to feel very comfortable and she has a great deal of local knowledge. Maybe that is not the area you were considering any way, but my goodness, it is very beautiful countryside there. Just as another thought, the DHSS may well be 'after you' if you put all your money into a property so as to bring your savings to too low a level so as to warrant financial assistance. They will look at your financial circumstances very carefully.
If I can help, please do not hesitate to get in touch.
• in reply to
Sorry Shasha, Have just re-read my message, I meant £50 pounds a month, not a week as Cabbage Cottage says. We were paying just a little under £200 a month.
shasha• in reply to
dear nader - thank yu so much for all your help and advice - i will definately bear it all in mind when we do eventualy sell here though it is looking like when we do we wont have enough to buy anywhere anyway !!
shasha• in reply to
sorry but what did you get for the £ 200 ?
• in reply toshasha
Shasha, I have just come down with an awful cold and just got back from the docs! Feel so poorly cannot think properly, must go to bed, but will dig out some papers and receipts from 6 years ago when I can get it together. Basically it was total care for mum who was bed bound, but no food, we provided that. They visited 3 times a day and then when Dad could not manage, they would help him get up and dressed in the morning and into 'jamas at night.I did all the shopping and major cleaning and taking Dad to keep various medical appointments, but they did give Dad a bath. Dad did have meals on wheels for a time as a bit of a trial and made the meals last two days, he could not eat it all and my mother needed a soft puree diet. The carers would wash up for them.My parents came gradually more and more in need of help and the carers took on more as time went on.
shasha• in reply to
DEAR NADER - I AM SO SORRY TO HEAR THAT YOU FEEL SO BAD PLEASE DONT WORRY ABOUT THE FIGURES - IT WAS JUST AN IDLE QUESTION - GET BETTER SOON LOVE SHARON
My mother was also diagnosed 3 years ago and has had severe urinary issues. She has to wear Depends as she will go numerous times a day, this is very common in PSP patients.
Hi all
I take vesocrae are night - it reduces the mo of visits to,the loo t3/4 a night
Is this of anynjhelp.."?"?
Lol Jill
:-)e
Dear Toyota11, What a great question, and all these answers have been so helpful to me. At the moment the nursing home is charging me for special big pads for Dad. They say, under Continuing Care terms he is allowed only 4 changes a day and that has proved to be insufficient for Dad, in as much when the time has come for a change often he has been so wet that the sheet and sometimes the pillows which have been put down his side to support him have had to be changed. Now I understand what the reason is for all this. These pads I buy are also not good enough and now I know why. Dad has absolutely no control at all as once when I was there 'wee'd' in the middle of a change and so they had to change everything again. With nearly 60 other people to deal with I could understand their dismay. I felt so sorry. I have felt concerned as I thought he was having too much liquid, but his mouth is dry from being open all the time and he desperately wants a drink. Yes, I am on sleeping tablets! Would not survive otherwise, I do not drink!
My husband does nt need to go to wee all the time h.is problem is that he stops and starts and stops
I, too, have this issues/symptom with PSP. From what understand. it's quite common, tho that can be cold comfort. Mine began to escalate spring/summer. More of the urge to go but little production/emptying of the bladder. Back and forth, back and forth. Fortunately I don't need assistance yet getting myself to/from the loo. Can see where it could really occupy a caregiver's time. For me, it's just annoying. And tiring. Have been checked 3 or 4 times for bladder infections because that's kind of how it felt; inability to empty and frequent urges. Was decided it's the PSP & movement or lack thereof of the bladder muscle. Have also developed extraordinarily painful bowl movements these last months on a daily basis, in spite of a stool softener. Know for a fact I'm clean on bowel issues; recent colonscopy was perfect. Again, more organs that aren't moving as they should due to PSP. Learned to live with these things; there are worse things.
hi judy its good to see you back but not on this subject you certainly \have had your share of troubles mate theres an old saying It goes WHEN YOU HAVE GOT TO GO ============= YOU HAVE GOT TO GO PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER BUT NOT YET INCONTINENT I WILL NOT SAY IM WATCHING YOU THIS TIME MATE
TAKE CARE BEST WISHES
I know what unmean Peter when ungotta go ungotta go!
Like now for the unpteenthe time today's
Loljill xx
But at least I still have my bowel and bladder to ,mmess with me!
hi jill hows it going\\ and i dont mean he bowel movements still soldeiring on mate i see \\ thsts good \\\had anymore falls lately i hope not i hope you have settled down now i have tried to be more careful but sometimes it does not work you really have to concentrate on what's going on dont you ah just a quick one mate to see how you are take care matey no more falls from you peter jones queensland australia psp sufferer
Hi
I have had PSP for about a year now. I have been having to go to the loo to urinate in the night. Apparently it was because of my bladder muscles being irritable. My GP has just put me on Ditropan 2.5mg twice a day. Things are much better now. I still have to get up in the night, but now it is less frequent. It's ok in the daytime.
I too ,have to go to the loo very frequently day and night , my husband gets fed up with
me . My doctor put me on Amitriptyline one low dose 10 mg tablet at night and now I can sleep to about 4 am.
.
Hi Peter and a all
How,ismitm
hi
rog was prescibed regurin at night it has been wonderful he only gets up once, so not tired next day.
regards
julie
Julie, mirabegron has halved the nightly vis its. Peter
Not what you're looking for?
You may also like...
How do you pray or keep hopeful?
My sister is in the hospital. My 16-year-old niece is staying with other relatives in town. I'm...
Has anyone had experience with a dry tongue?
My wife frequently complains that her toungue is very dry and feels like plastic in her mouth. I...
Visitors for people in a nursing home.
My sister is in a nursing home she can't be left alone. She has PSP. Her daughter lives NEAR by but...
Just to clear something up....
Dear All,
Thank you again for your varied and supportive replies, all views appreciated!
However,...
PSP- When to begin using a wheelchair?
My mum currently has a walker and is able to get herself up from sitting and can walk, although...
Thank you from the bottom of our hearts and good news
Is there something else we should be doing?
Update on how well my mum is doing since leaving hospital 7 weeks ago 😁
