What next

Hi all .

Well finally plucked up the courage to write a post . Please excuse the spelling and punctuation as I'm not that we'll educated.

Well I have to start by thanking all you wonderfully brave and courageous people for sharing your experiences with us all .

My uncle was diagnosed with psp about 3 years ago now after reading a lot of posts I tend to think he probably has had symptoms as far back as 6 years .

Uncle Michael is in a care home he also suffers from parinoid schizophrenia , he had the peg fitted 14 months ago now which I know he regrets. This last few month can't understand a word he says his eye's hardly move always seems to look up. It really is heartbreaking not been able 2 help . Anyone know what stage comes next ?x

13 Replies

  • Hi, daveyscott, glad you wrote. No one knows what the next stage will be for any individual, I'm sorry to say. Folks linger and folks die suddenly; weakness seems to come and go for some people, for others the decline is steady. How terrible for him and you that he has psp and the mental disease to contend with. How fortunate he is that you care. Hang on. Love and peace, Ec

  • Thanks for the reply easterncedar . Your kind words are apreciatetd. God bless. X

  • Unfortunatley it PSP is very difficult to put into a stage. I don't know where there are stages prescribed. As Easterncedar said it is an individual thing where in one person one thing will happen while in another person, another thing will happen. I think it is safe to say that everything PSP related that he is going through, is part and parcel for PSP. B was diagnosed 3 years ago, showing signs at least 2 years before that and has since been fitted with PEG. What happens next? I do not know. I will continue to make him as comfortable as i can and as safe and yet independent as I can.

    Where does your uncle stay? Is it in UK? or US? or elsewhere? Well I'm glad you found this site. I just heard on NPR today that they found a gene directly linked to Schizophrenia.....you might download it so you can listen...it's worth a gander.

    As for PSP you just wait and see.


  • Thanks for the reply abirke. From the UK little town called consett in Co Durham .

  • I wasn't going to reply to your post as my partner with PSP died a week ago and I am trying to wean myself off this site. Then I saw you were in Consett and my man came from Shildon so that has got me writing. Unfortunately for you I have nothing new to contribute. Chris was 68 when he dıed, dıagnosed wıth PSP in March 2013, had symptoms since summer of 2010. I am a retired academic so research is in my blood and I researched the hell out of PSP, to no avail. There is no 'normal' progression. Average life span from onset of symptoms is 7 years. Each patient has different symptoms and the disease runs on a stepped progression which means instead of a steady decline they suddenly decline then stay on a plateau for a while before the next decline. C followed this pattern until the last three months of his life when he just declined rapidly. He didn't have a PEG although he struggled to eat and drink for last four months or so. We had discussed the PEG at length shortly after diagnosis and he decided he didn't want one. All you can do is spend as much time with him as possible. Right up to the end C loved long drives as he could watch the landscape go by, he also listened to the radio (streamed on iPAD as we live in Turkey and he loved Radio 4) and audio books and 'watched' films on DVD. He was actually listening to the films most of the time as it was difficult for him to focus on the screen. Hope some of this helps. Good luck.

  • Thanks pattz.

    Yes it does help enormously . Sorry for you loss pattz but Chris is at peace now . God bless x

  • Dear Pattz, while I understand and sympathize with your desire to "wean yourself off of this site" and get shut of psp, which has consumed enough of your life already, I do want to say I will miss you. I always got something from your posts and replies, and have a great deal of admiration for the way you live your life. Best always, Ec

  • If you'd like to stay in touch you can be my friend on FB or I can give you my email address - message me. However, I am still here, as you can see, so my weaning is not too efficient.

  • Hello daveyscott, I agree with Ec. No one can predict when the end will be. Some get aspirational pneumonia and go, others recover. Some seem reasonable fit but go suddenly, others seem very weak but hang on. All we can do is make the best of each day.


  • Thanks NannaB.x

  • Too right, NannaB - of course that's true of people in general, too! There are no guarantees, except that no one gets out of here alive. Love, Ec

  • There are never answers to this disease, are there ? Its infuriating. We just all hang on and manage.

    Jean x

  • Thanks Jean. X

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