Another wonderful weekend with PSP!

Just spent a wonderful couple of days in my other home. You know the one I mean, the where everyone running around in different colored PJ's and the machines constantly ringing alarm bells, that no one takes any notice of, yes A&E!

S rushed in on Sunday afternoon. We were in the car, just going out, when he pointed to himself, thinking he wanted to go to the toilet, I turned the car around and we went home. Sat him on the loo, then these spasms started. Every couple of minutes, he was in complete distress. Tried to ask questions, to find out what was wrong, got nowhere, except the end of his penis was upsetting him. In the end dialled 111, they had to get someone to phone me back,. In the meantime, the spasms were getting worse, so I just dialled 999.

They all thought it was his bowels, due to the recent history. X-rays showed no blockage, just completely full. All blood tests came back normal, eventually someone examined him and said UTI. But oh the pain he was in, every two minutes he would spasm. He has AF, so his heartrate was going off the dial, one second 175, the next 40! Thankfully his blood pressure stayed stable, but I was frightened that his heart was going to stop at any moment. I have never known S to be really needy, but he was clinging to me, so frightened and distressed. It must have be dreadful for him, everytime they asked about pain, he indicated the was NO pain! Thankfully, nobody believed him.

My sister was with me through out, she knows PSP is rare, but she was totally shocked how only one person, out of the many we saw, had heard of PSP and even he didn't know anything about it. Had them all reading the PSPA leaflets! (Thank you PSPA!!!)

They have filled him up with antibiotics, came home yesterday. Both now completely knackered.

The good thing (I hope) is the nurse at the hospital has spoken to the DN's about proper bowel management for S, that they HAVE to provide! She was NOT impressed with them, in fact deliberately kept the DN on the line, for 5 minutes, while she asked me some questions, "to let her stew!" Nurses words not mine! I haven't heard from them yet, still I suppose it will take a week for the information to get from that person's head, to where it needs to get!!!

Anyway S seems to have survived this trauma without any obvious set backs yet. With the letter of complaint, that had already been sent, now this, you never know, our GP and DN's might actually do what they are paid to do, look after the sick and needy!!!

Lots of love


28 Replies

  • Oh Heady, what an awful experience for all of you. Let's hope S gets the future help he needs from your GP and the DNs.

    Take care Heady.

    Lots of love.


  • I hope so, NannaB. I am so fed up with them not taking PSP seriously, with all its quirks. How is Colin today?

    Lots of love


  • He is as OK as can be expected thanks Heady. Lactulose finally worked after just 4 days this time. Spent all morning doing things for him + washing, washing and more washing. Have managed to dip in and out of here though and that's keeping me sane. I'm trying to paint a birthday card for my niece so now C is settled until about 2 pm, I'll get on with it, once washing lot 2 is on the line. Washing load 3 has just been put in.

    Happy days!


  • We must remember, it's not only us that works overtime. My third lot needs to go on as well. Thankfully the tumble drier saves me one extra worry! Although being forced to be outside for five minutes, must be fairly soothing! I'm not doing much, dozing and reading in between.

    Lots of love


  • Sounds horrific, hope the antibiotics work and S stabilises. Your DN sound so unlike ours who are always on the ball and friendly. Hope they start being more professional for you and S.

    Best wishes Tim

  • 🛫🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🐷🛬

  • Hi heady , I find when John is constipated he is is very slow or even doesn't pass any urine .

  • S has a Catether fitted, but you are right, I am sure one follows the other!

    Yes, it's not much fun, sitting around a hospital. Not only the worry of your loved one and seeing them suffering. But simple things, like going to loo, getting a cup of coffee and eating, forget it!!! The staff really ought to make more effort to make sure anybody with the patient gets a rest, especially if they know you are a full time Carer! It doesn't take long to say, "isn't it time you went for a walk and get a drink, nothing will be happening for the next ten minutes" instead of you worrying you will miss a doctor's visit.

    Lots of love


  • You think you are tried and stressful av home but all the hanging around in the hospital is even more tiring isn't it.

  • Feeling shocked. This will surely get your DN and GP into gear. Their indifference and incompetence is unacceptable. I really hope things improve for you, Heady. Thank god for your sister.

    Love ans a big hug, Jean x

  • And my daughter, she has emailed the person she was complaining to last week, to tell her about the weekend's problems. Although I know this will just up my GP's thoughts, that S should be in a home!

    I don't know what I would do, without the support of my sister and my daughter. They are the only ones who care!

    Lots of love


  • Don't we really appreciate that kind of support when we're up against it ?

    lots of love, Jean x

  • I just had a message on my answering machine from the DN's. They can't help me! So much for the hospital trying to put pressure on. Who do they listen to? Meant to have one of them coming around to do S's IRN tomorrow, so we will see what happens!!!

    Lots of love


  • Can't believe it !!! Is there some other agenda going on ?

    Some internal power struggle amongst them ?

    Its awful for you feeling so rejected by them all.

    Gird your loins for tomorrow.!!!

    love, Jean x

  • Hoping I can just stay tearful! I have a mantra going around my head, I must NOT get angry. The last thing I want, is for them to think me abusive or difficult. S needs these witches too much!!!

    Lots of love


  • I agree. Grit your teeth and cry for England !

    love, Jean x

  • Oh Heady ...Oh poor S...I am so sorry....What to do when know one seems to know what to do....Thank goodness for that one nurse who seemed a little knowledgeable and certainly more caring....Lets hope that attitude falls on other medical people taking care of S!!!!

    Have a better day


  • Thanks AVB, just taking it easy today, both of us have slept most of the day.

    Lots of love


  • ahh sweet sleep :)

  • Jesus heady what a nightmare, another nightmare!!

    So distressing it's not even true!

    Unfortunately I just think everything is S**t and will get worse! I think the same for us, no consultation I know!

    Sorry darling not what you need to hear!!

    All I can do is send you huge hugs and prayers


  • I am beginning to think it me that the medical profession don't like! So it does help to know I am not the only one fighting this ludicrous battle. I am wrong? but surely being able to poo, is one of the basic things that needs to happen to our bodies. Surely it's not uncommon for people to have these problems, SOOOOOO why are we having so much trouble? The way our DN's are reacting, they have never come across it before!!! Let's face it, even Tescos have a huge area with various drugs to make or stop you going. So why haven't the medical profession heard about bowel problems?

    Hope you are bearing up and getting plenty of rest! I am on my knees, after just two days. Please tell me you and your Mum aren't still doing the 12 hour shifts! When your Dad comes home, it will be very hard, especially after all this time. YOU have to be well rested to be able to cope with that!!!

    Sending big hug

    Lots of love


  • Hi, Heady, Poor you and S it's so distressing for both of you isn't it? it might be worth asking your GP or DN about Movicol. It works really well for chronic constipation. Once the bowel is clear you can then up or down the dose yourself depending on the previous days bowel action. It's more gentle I've found than lactulose, My Mum has had constipation all her life but once she was persuaded to make the change I've been able to keep things fairly stable ( fingers crossed). On carers UK I was told to enjoy the time my Mum was in hospital and take it as a rest, see what I mean about not getting how it is for carers of cbd/psp? How can you leave them my Mum cries at the thought of having to go to the hospital. Hope your both more rested today. Sharon

  • Oh Dear Heady,I feel so sorry for you both.I have only had minor problems with a HCA that came, I feel so blessed with our GP's and DN's there is not a lot of room in our village or I would suggest everyone move here and share my helpers.Love to you both Pxx

  • Heady so sorry to hear about S ordeal, hope you are both rested, and I bet you are both happy to be home, let's hope the nurse at the hospital got things moving with the DN. Loppylugs5 said she is happy with her GP and DN, our are so lovely, the matron is such a lovely kind hearted person, if you ring up with a problem, they will always come out. GP George had another urine infection on Saturday, called 111 I thought here we go again another 12 hour wait, but oh no one of the GP from the surgery came in to see George, short wait, and he had antibiotics on him, so we could start giving them to him. Heady maybe you should move near me!!!!!!!!! Sending you a big hug Heady, and one for S. Yvonnexxxxx

  • From experience, Movicol & Senna combination, have worked best with us. So many variables with PSP though!

  • Oh, Heady! I just saw this! What an ordeal for you both, how harrowing and èxhausting. I do admire the way you keep fighting. Your husband was lucky to find you! I hope you get some rest. Love and hugs, ec

  • What a rollercoaster you are both on, let's hope that some help gets sorted out this time. It feels great when you have someone routing for you and actually helps you out. Hooray for her. No wonder you are exhausted and glad your sister was there to support you. Love Kate xx

  • loved the start of your post! similiar weekend after fall now catheter in and rog successfully delivered a huge #### monday night after eventually getting a phosphate enema from the chemist, whos words were i quote ' none in stock don't get much call for them'!!! anyway now have effective bowel management in place DN's were angels over weekend but its the only time i thought i can't cope and it was the being unable to keep him clean, simples!!

    love and more love julie

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