PSP Newbie

Hi Everyone, newbie here. My dad was diagnosed with PSP in March this year, and my mum and I are kind of muddling through so far. We're in England (Staffs). My dad starting falling about 10 years ago, and now his symptoms are quite advanced. Diagnosis took forever, and was a real battle. Eventually, I printed a list of symptoms from a PSP info page and took them to the third consultant neurologist and said, here, this is what I think my dad's got. He just said, yes I think so too and sent us to a Parkinson's nurse, who, he said, knew a lot more than he did. Is this really how it should have been? From what I gather, my dad's progression isn't exactly typical, as he's had symptoms for so many years. Advice and information on what to expect has been few and far between. We're now in the process of making alterations to their house, wet room, through the floor lift, etc. Would be so nice to talk to others. My mum feels very lonely, and unfortunately doesn't use a computer, so I can relay any info to her this way.

25 Replies

  • Hi there lovely to have a new member of the family, but this PSP is a horrible illness. My husband was diagnosed in 2014, he is in a wheelchair, we think he has had this horrible illness for about 5-6 years, we have struggled at times. Good you are having the adaptation done. Have you been in touch with the PSP soceity? What about a social worker, also get the GP involved, some of the GP are useless, and get in touch with your local hospice ask your doctor about that. George goes to a day centre twice a week, which gives me a break. Sending you and your mum a big hug. Yvonne xxxxx

  • Hi Yvonne, thanks for replying and sorry to hear about your hubby too. The day care centre would be lovely to give my mom a break, but dad won't go..he's happy just to sit in his chair all day and watch the television. The problem is, the minute my mom turns her back, he'll try to get up, and then he falls. He had another fall yesterday, trying to switch the fire on. He doesn't seem to register that he needs to wait for help, we've tried giving him a bell, telling him off...everything..nothing works! I suppose that's part of the condition though. I didn't know hospices offered this type of thing..thank you for that..I guess it will be unavoidable soon and the the choice will be taken away. The GPs have been rather useless, unfortunately...I keep being batted backwards and forwards between various organisations, with each one telling me the other can help, then finding out they can't. Social services are involved, but the alterations to the house have taken five months so far, and we've just found out they're not even going to START the work for another five, so my husband is going to do it all himself. My poor mom can't wait that long, she's really struggling to wash dad, and he's a big chap. They won't accept carers yet, mostly due to the fact that they can't choose the times, and my dad is quite rigid about his routine and gets stressed if it doesn't go to plan. He's also a very private person, so it all falls to my mom. Not sure how much longer she can keep on managing though. It's a tough one! Not tried the PSP Society yet, so I'll go and have a look at that now. Thank you so much. It just helps so much to talk to someone who knows what it's like x

  • Hi Sasmock, welcome! I had to be really tough with my husband as he didn't want outside help and for two years I struggled alone. When I felt I couldn't go on any longer I told him either we had help in or he would have to be cared for elsewhere. He soon changed his mind. He soon got used to other people helping him and I would hear them laughing in the shower. It's important your mum gets all the help she needs. If she burns herself out who would look after him. I told him the same when we got a space at the Hospice day centre and he didn't want to go. Your mum must think of herself or she will be no good for him as things will get progressively worse for both of them.

    The PSP association will let you know where your nearest support group is and give you any advice you need but the lovely folk on this site always come up with suggestions as someone will have gone through what others are going through now.

    Best wishes

    Nana B


  • It's worthwhile getting in touch with your GP to refer you for assistive technology. We have it for our mum, it's a sensor you put under the beget or an armchair the minute she gets up an alarm goes off. My dad and I would come running back immediately. The NHS provide it, but as usual will have to fight for it. It will make things easier for your mum. Hope it helps.

  • We did ask OT about that but she didn't do anything about it. I will ask GP too thanks. mom is hard of hearing! Dad has got a bell, but she can't hear it, so not sure the alarm would be any better, unless it's VERY loud! If it wasn't so sad it would be funny! You've got to find the laughs where you can !

  • I know what you mean. Your mum can take the alarm gadget with her and it is very loud. So if she is in the kitchen she takes it with her. Worth trying, it reduced my mum's falls.

  • Thank you. I have a few calls to make today, re this alarm, and CHC that we've not been told about...this group is so useful!

  • Hello sasmock and welcome, although I am sorry for the need to welcome you! Here you will find your extended family of friends that will help through every part of this journey!!

    I'm pleased to hear that there are alterations underway to the house because this is a must!

    Definitely please ask the GP for a referral to your local hospice they are NOT just there for end of life care and our hospice has been our lifeline!! My dad didn't want to become a patient and in fact ended up in tears when I mentioned it, now he loves them all, as they do him! The hospice can offer daytime activities for your dad to attend which you and or mum can go too too! They offer respite and care at home too! We wouldn't have coped without them!! I'd personally say they are a must above all else!

    Then you may want/need to look at continuing health care, this is where the NHS will pay for all of your dads care, be it at home or otherwise and note it's NOT means tested!!!!!

    There is help out there, it's just finding out about it, ask anything on here, no one will judge, only sympathise in fact!! You will find someone has always wondered or is going through the same thing!

    May I ask how old are you parents and do you live nearby?

    Hugs x

  • Thanks so much for your kind and supportive welcome! My dad is 73, so is mom, and they live just around the corner from me, I finally persuaded them to move closer 2 years ago thankfully.

    I'm really interested in what you say about NHS continuing care - we've only been made aware of the option to have carers via social services, but this would be a means tested option. Everyone I've spoken to, Age UK, social, etc, has said that we will have to pay. Dad gets Attendance Allowance. I've asked for a care needs assessment for my mom, as she's struggling and I'm doing loads too..but I've been told by the social worker that whatever she's assessed as needing will have to be paid for. It does seem particularly cruel, especially as they've now got to pay the full cost of the alterations as they can't wait for the grant to be processed. I didn't dream in a million years that someone with urgent needs would have to wait 10 months!

    Is it necessary to get a GP referral for the hospice? I called the GP last week and explained that mom was having a bad time, could they suggest options for some emergency care, and I was told to arrange it via private agencies. The GP said it wasn't really their area. Not particularly helpful! I shall have to ask specifically about hospice. We do have a really nice one about 7 miles away. I dread suggesting it, but having read your experience, I feel this might be the way forwards. Thank you x

  • Firstly totally s**t useless advice you've been given!

    Your dad has a progressive terminal illness and therefore would qualify for chc! It's a long drawn out process but you must explain everything as in worst case scenario i.e. Today my dad ate 1/2 a toasted tea cake using his hands (best scenario) however generally 9 times out of 10 we feed him mashed food n he coughs n sputters, we then do our best to stop the coughing, rub his back, administer inhaler if necessary

    Get your district nurse or even better once referred by GP to hospice get a clinical nurse from the hospice to start the chc process

    We were awarded chc, fast track in May when my dad was in hospital and now have 2 carers 4 x a day, yes of course dad doesn't like it very much but needs must and without them he wouldn't be at home with us!! Equally chc will pay for care in a home and equally offer you respite care in a home. Note we now have 2 afternoons a week where the carer looks after dad n we go out, none of this we pay for, the NHS does n remember it's not means tested, check out www.caretobediffernt

    The GP, social services and age U.K. are NOT giving you the right information! Why they don't tell you about chc really annoys me!! If you need any help message me and I'll do all I can!!

    Your darling mum won't be able to cope as at 73 it's just too much!!

    Please keep us posted!! X

  • Hi, welcome to our wonderful family. Finding this site, totally transformed my life. From having nobody who had heard of this evil disease, suddenly I had a massive support team behind me.

    From reading your posts, I agree with Satt, you MUST get in touch with your local hospice. Unfortunately, you do need to be referred by your GP, but just tell him to do it! They will be able to advise you about CHC, get the right services involved. S goes to the Day Centre, ours runs a 12 week course. So it is a bit more structured, nothing like the " dreaded waiting room" that your Dad will be imagining. It's not full of old people, just people like him, that have a life limiting illness. Go and visit, you will be pleasantly surprised how lovely they can be.

    I think, as far as symptoms are concerned. With that wonderful thing called hindsight, I know S has had this bloody disease for at least 20 years. His spacial awareness went and I can think back to several experiences, over the years that this was the problem. Obviously didn't realise at the time, but knew that it wasn't normal. He was diagnosed in 2013, but had full symptoms for two years before that, after suffering a stroke. Now he is in a wheelchair, everything has to be done for him, can't communicate, has a catheter fitted and is on puréed food.

    Living with PSP is very lonely, as your Mum is feeling. You fighting a lot of the battles, will be of enormous help to her. Try and get her out when you can, or just do some "normal" things at home. Get a take away, bottle of wine and find a good film to watch, or whatever you can think of that your Mum would enjoy. Take them both out, even if it's just for coffee, seeing others going about their lives, gives a lot of pleasure.

    Most of all, stay in touch with us. You can rant and rave, kick and scream. We will all understand, nobody judges. Every one is on this terrible journey and we all need each other for support.

    Sending big hug and lots of love


  • Hi sasmock,

    I don't tend to post much, as I am very new to this fantastic site, but I read all the useful messages daily, last week someone posted about Admiral nurses, and I emailed them to check if they are in my area, yes they are, and I have to confirm we fit the criteria for help, which PSP/CBD qualifies, not sure yet how they help, but will let you know, also our continence nurse is fantastic we used the Afex system for about 4 years, but now we have to use pads, also DN is very good in my area, maybe ask to see Parkinson's nurse too, we have just been referred by GP to go to hospice day centre, all areas are different , but all help is good,

    Good luck with everything and hope you get help quickly,

    If you don't qualify for help because of savings, try crossroads they are a charity who will offer care if you don't have funding from social services

    Big hugs


    Ps PSPA helpline is a lifesaver too

  • Well first , is your mum old enough to learn the computer....not much here to learn and I am an idiot on the thing. She may really get something from using this on her own....

    I had to tell Dr that it was PSP. He did some tests and agreed....My husband was diagnosed March , 2013

    It sounds like you are really getting on the ball getting your house ready for your dad...Good for you! Good for him!

    PSP affects patients in different ways. You must get a neurologist and a GP on board. You want to make sure dad does not have other issues that must be dealt with. Having mobility or at least balance issues ten years before asking " is it PSP?" either proves that PSP affects everyone at different times along the illness' path or maybe that was due to something else...

    At any rate as you continue with this new family you will discover things and perhaps even enlighten us oldbies on other welcome....I know one thing that needs to happen right now . Your mum needs a way to vent and to find that others are going through the VERY same thing as she is . You too need to take care of yourself both physically , emotionally and spiritually...Get rest, scream and cry here if you need, and pray daily. I will leave you with words I find comforting from the Bible...again welcome...


    For thou art my lamp oh Lord: and the Lord will lighten my darkness. II Samuel 22:29

    If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him . James 1:5

  • Welcome to this amazing site full of information and support .

    I too am relatively new to PSP and it's horrendous symptoms - I'm at the beginning of this journey with my 75yr old mum and I'm her full time carer .

    We were referred to our local hospice by the DR from the Parkinson's clinic this may be a way forward if you do not get anywhere with your GP ?

    Sending you and your family a big hug .


  • Hello.

    I agree with all that's been said and would only emphasize the importance of your mother getting time out. It is unbelievably tiring being on alert all the time. My husband also goes every week for 5 hours to the hospice. It gives me space but also he likes the attention and they are so lovely there. Your GP or neurological nurse should refer you.

    I have found that most people have been very reluctant to discuss future progress with me and it does feel like pushing a load all the time.

    This site is addictive if you can help your mum to use it.

    Welcome, Jean x

  • welcome! i agree with all the replies, things will be better after the alterations, is the delay due to a maintenance grant ? if so ring the council every week quoting the worsening condition of dad and they will be held resposible if he has an injury, has the Occupational therapist been in? my darling you will be come extremely strong through this journey!

    it is hard but your mum has to take priority otherwise the whole pack of cards will come tumbling down, so start slowly with the carers rog now has chc funding so our package works well same guy comes in most days and life is doable so don't lose heart , there will be laughs along the way , mum will be eligible for three hours free flexible break from social services so ring them! try also not to take all decision making away from her otherwise you will get overloaded particularly if you have a family to care for. we are always here !

    julie xx

  • Whats this three hours free flexible break from social services ? I don't get anything free. Is it general ? Finding out what we are entitled to is such hard work. I hate asking and find every-one says " are you getting all benefits ? " but can't tell me what they are.

    What a system ! Rant over.

    love, Jean x

  • Hi yeah it's called a flexible break and follows on from the carers assessment that I requested from social services, max is 12 hours over four weeks but you can take in whatever format suits, they usually stipulate what company takes the contract, prior to rog' s deteriorating this meant increasing paid hours with the company was much easier,

    Regards julie

  • Thanks, Julie. I'll follow this up. I declined an assessment as I knew we would have to pay but perhaps I should go back. I organised my own help.

    Love, Jean

  • Hi again well worth having an assessment even with savings , we got caught out as they looked at income so they have you all ways! We now have chic funding now so that is awarded whatever your means!

    Enjoy the day


  • Nt posted i while nt bn gd i have started to get muscle waistage in my legs i have psp whats next help

  • Hi, I'm new here so not sure of the process, but it might be better for you to start a new thread so people can see your question? It might get lost here. My dad has a lot of muscle wasting, and he's just started physio. I had to push really hard to get physio to visit his house. I got this done through the Parkinson's nurse. He just had his first appt, the ladies were there for 2 hours and he laughed a lot, found it really helpful. Is this something you could perhaps ask about?

  • I can't thank you all enough for your lovely replies. I wish I'd accessed this group earlier! It was always on my 'to do' list. I'm really going to try to persuade mom to get herself online. She's terrified of technology, so it may be an uphill battle, but she's so lonely, I know it will be worth it. You're a lovely lot, and all the more so for offering such kindness when you're all fighting your own battles. Thank you all x

  • Welcome Sasmock,

    I am so sorry to hear of your Dad's diagnosis ... my mum was diagnosed in march too and it took me a while to write in this site as I was so upset . However the people here have been nothing short of amazing and supportive ! I have had so much advice from everyone it's really helping although mums GP is rubbish so have a battle on my hands !

    Keep in touch and sending love xx

  • Newbie. I am new too. However wish I had found these people before. Like your Mum I feel very alone too. You are so kind to try to help her. If you send me her telephone number I will be glad to ring her. My husband has probably had this thing longer than we thought but even now hasn't been properly diagnosed. He has lost the use of his legs and now his arms seem to be struggling. He has problems drinking and the list goes on. Send the number and I will ring. Night time is the worst for me. I feel very lonely then. We all have enough to cope with without support not being there. I live in the North West of UK not that that matters? Just thought you might like to know.

    Marie_14. There is another Marie on here I believe so had to have the _14 as well.

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