Hi mum has been diagnosed with psp or paranoplastics but consultants leaning more to psp, she is in the last stage where she's bedridden and hasn't been able to talk for 4-5 weeks then one day when I went in she was talking! She's alittle confused though but most of the time she's ok,she's just eating pureed food but coughing and spluttering if we give her a drink.anybody been through this part of psp where speach comes back? We as a family don't know where to turn with this terrible disease. Cheers Gill x

16 Replies

  • Hi Gill

    Sorry to hear about your mum.

    Paraneoplastic syndrome only occurs as a result of certain cancers in the body. As the body fights the cancer, the immune system also destroys other parts of the body (for example, when it attacks certain brain tissue, it can produces some symptoms similar to PSP). Has your mum been diagnosed with a cancer?

    Some symptoms of PSP can be intermittent, and the fact that your mum talked after a period of not talking is not too unusual. These events usually do not last long.

    You mention being in the last stage, but remember severe symptoms can last for months and sometimes a couple of years in some sufferers.

    I do hope the consultants will help you through this period, and give you all the information you will need to keep your mum pain free and comfortable. Sadly, there is no medication to stop the progress or cure PSP, and only the symptoms are treated (often with poor success).

    Take care


  • Thanks T, Mum had stage 4 ovarian cancer last year but in the July they could not trace any cancer in her body, she has all scans such as pet, MRI, dat and ct the only thing that showed up was the dopamine level on one side of her brain so they prescribed seminet to which she was allergic to, she is a wee miracle but it's been very very hard for us all because when she got the news of remission she didn't jump for joy cause she knew she wasn't right if you know what I mean still falling. So this horrible stage can go on for even years? She does say she's not ready to die poor wee thing. Thanks again for info Gill

  • i m` sorry tha tyoru mum has been dxc with pep and is in the latter stages

    but you need to make her as comfortable as possible

    i have psp and anow what you must be going through but i do not think her speech will come back so you need to make plans for her ..i know ti is difficult when it happens so suddenly i have had nearly 4 yrs to prepare for an end which shows no signs of coming yet

    my incontinence problems are worse ,/ my balance is worse my speech is more garbled and a lot quieter than it was but i am GOOD as i may have the slow sort of Psp and have another couple of years yet (who knows??)

    what age is yrou mum = -i am 68 and was dxd nearly 4 yrs ago now and am still upright most of the time apart from when i am flat on my face r on my back having fallen over

    i acna frelly do nothing for myself nay more without falling and am hoping to get the CHC IN place

    lol Jill


  • Thanks for reply and so sorry that you have this but your optomisim is fab, mum is 76 she can't do anything either she can't even put her wee hands under the covers, she's in a pallative care hospital where she is getting great care, she has asked to go on a chair today so I'll see what happens when I go up soon, she dosnt want to give up and it's the saddest illness she beat stage 4 ovarian cancer last year but wasn't over joyed when she was told she was in remission because at the back of it all was this lingering horrible disease. Thanks again Gill sending you hugs x

  • My advice, forget about stages they mean nothing. Patients are all different. Some rally when you think they are about to die and others die suddenly. Just like the rest of us there are not specific dates/times of our deaths. Live one day at a time and don't look further than today and you'll do better. You can't know the date/time of the patients death. He/she could live months beyond when you "think" they are in the end. Stages are only a number and no one has ever been able to know the stages, what's in each stage, because symptoms are different for each patient. There are 24 symptoms of PSP that my wife never had but many others do have so don't hang your had on "stages". IMHO Jimbo

  • Thanks jimbo, the hardest thing about all of this is watching mum deterioate, she is now going into a dimentia at times and which makes it alittle easier if I can put her in a better place of course sometimes I can't this is relatively new so yes one day at a time. Thanks again and very sorry about your wife. Gill

  • Hi Gill my dad is in the last stages of psp it awfull he has his food all mashed up takes him a few hours and every mouthful makes him cough . Every time he drinks he chokes and he is very chesty where it sits there and he can't remove it. It's a terrible illness sometimes he looks so good and another day he looks terrible and can't talk all we can do is be there for them and hide all the heartache debbie(glydes)

  • Hi Debbie,, yes it's an awful disease mum looking ok today just getting a bit confused, she's not even choking now and she's speaking, I think the worst thing for the family is you don't know what your going into everyday cause it can be different everyday, we have been called in 3 times and mums had a chaplain 4 times! Going back to work next week as I need to try and get my life back on track as I go up to the hospital twice a day but that needs to stop because this could go on for years what a horrible thought but my mum is such a fighter and she wants to still be here, think that's got a lot to do with it as is a loving family. What age is your dad is he still at home?do you have much support through this horrible time? X take care Gill x

  • Hi Gill im texting this with tears streaming down my face just got back from seeing me dad who is 77 he wasent to bad yesterday but today he's in bed with Another chest infection he's had this illness for about 7 years and I'm finding it real hard to cope with. He's in a home and there so good with him. We're ment to be going to antigua on Tuesday been booked for nearly a year and I'm torn as my husbands looking forward to it but he nos how I feel but he says I need a rest before before I make my self I'll. I see him every nite it's quite away to go and we don't eat till gone 9 I admit warn out but Im not sure I can leave him even tho my daughter and sister said they will go in every day debbie x

  • Hi Debbie, am the same mum will be 77 next Friday and I have the same argument with my husband but he is only looking after you!!, you need to go to Antigua (it's lovely by the way) so you can be strong when you come back, you know he will have visitors and you cannot make yourself feel guilty, we are the same away to Cape Verde next month I will go baca use I'm making myself Ill with all of this, do please Debbie go and chill try not to phone just recharge. Enjoy Gill x x

  • Oh, Glyder, I do hope you've gone on your vacation. It's no good wearing yourself into tatters. You need to take care of yourself, too. Wishing you some sunshine, Easterncedar

  • My husband passed away last year with PSP, he had trouble with speech. A speech therapist helped

    some. He could communicate a bit, she helped him drink as well. No straws should ever be used.

    He will have better days from time to time, with speech. Blessings go with you, it is such a complicated

    disease. Take care of yourself as well.

  • My husband passed away last year with PSP, he had trouble with speech. A speech therapist helped

    some. He could communicate a bit, she helped him drink as well. No straws should ever be used.

    He will have better days from time to time, with speech. Blessings go with you, it is such a complicated

    disease. Take care of yourself as well.

  • Hi pipperscott, that's the thing, you neglect yourself and make yourself I'll with it all, my wee mum very poorly tonight just wish she would close her eyes, an animal would not have to go through all of this x cheers gill x

  • She needs to have help to allow her a day or afternoon to herself. She will better be able to handle this.

    It is a helpless disease, it robs everything, remember times before. I hope she can find time to herself.

    I finally had help in the afternoon but even with that it was difficult. Maybe someday there will be

    a help of sorts, praying for a cure but doubt that. take care

  • your mother needs help explaining the better she can feel, getting away briefly, the more help she is with your father. I experienced this with my husband. With this dreadful disease the most to be done is

    make him comfortable and loved. I believe they do not fully understand what is happening.

    She needs love as much as he will, it is a very sad time for everyone. The sad part is that all his loved ones

    suffers. My heart and prayers will be with you. Take one day at a time. Take care, prayers to all.

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