New to PSP

This is very new to myself and poor Mum who has only been diagnosed within last 6 weeks. Mum is 84 and always been in good health until18 months ago. Now everything going down rapidly recently admitted as carers felt she was unsafe at home. Sorry to say she has not got much in the way of help/support from Parkinson's Nurse Specialist, as a fellow nurse I am struggling to comprehend this. What support has anyone got from their PN.

Did not know aboutPSP trying to find out as much as I can to support Mum. Any advice out there for me as we are at the beginning of this journey.

6 Replies

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  • Hi, sorry to hear about your Mums recent diagnosis. I am afraid most of us in the UK, will say "whose that?" Regarding the Parkinson Nurse! As for finding out more about PSP, well you have just found the only people in the whole wide world, who know anything about it!!! We are all sufferers or Carers, like myself, husband diagnosed three years ago. You will learn more about PSP, than anywhere else, warts n all, but I'm guessing as a nurse, you would rather have the truth.

    The only people I have had any real support from, is the speech therapist and our local hospice. Nobody else seems to have heard of this evil disease, nor can be bothered to find out. That includes my GP and District Nurses!

    Therefore it is a very lonely place. That's where this site kicks in. Ask any question, someone, somewhere will have experienced what you are going through. We are world wide, so an answer will normally come back quickly, what everytime you post. Rant, rave, kick and scream, you won't be able to shock any of us, we are all feeling exactly the same.

    I suggest you start going through old posts, to learn more about how this diseases affects sufferers and how Carers cope with the symptoms. Warning, some of it will not be pretty reading, as a lot of us are 24/7 Carers, therefore very tired and stressed!!!

    Look forward to chatting with you again soon.

    Lots of love

    Heady

  • Well said, as usual, Heady.

  • As Heady has said who is that for the PN. We've seen ours but he was as helpful as a chocolate fireguard and had a right attitude about him. In fact every health and care professional I've come in contact with has not been helpful at all. I've learnt the most from the PSP association and this site. I've had to chase and get angry with everyone to get help and still doing so as they still don't respond. Sorry probably not what you wanted to read. Hugs

  • Dear Sun16flower, having a diagnosis at your mother's relatively advanced age will make your experience different from that of many of us, but not all. Psp does pose unique challenges for each patient, no matter the age. Sorry not to have more to offer, but you are a nurse, so I'm not telling you anything you don't know. It's hard to see a parent ill. I hope your mother finds a safe and caring place to be as she feels unsafe at home, and that you are able to make some pleasant memories together yet. Love, ec

  • Thank you all, having read a lot of the posts it is clear the journey is going to be challenging. I struggle to comprehend that health care professionals involved with PSP patients lack the knowledge they need to best support the patients in their care. I am ready to shout all I have too for my Mum.

    Sunflower

  • To be fair, this is a rare disease and every patient is uniquely affected. Not to say some couldn't try harder to be of use!

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