Recently Diagnosed

Hello, i am looking for some advice for my nan as she has recently been diagnosed with PSP. My nan suddenly went down hill a 2 years ago, she had loads of tests to try and find out what was wrong with her and she has finally been given an answer.I have always been very close with my nan(she is my best friend) i am heart broken that there is nothing that can be done to bring her back to her old self, she is very disabled, she cannot walk, she can a little with assistance but she still falls with 2 people helping her. She struggles to eat she gets it all over and has to eat very slowly, she doesnt eat much causing her to loose weight. She struggles to talk sometimes, she stutters all the time and sometimes cannot get a word out so she just gives up and goes quiet. She has had alot of falls in the last year, she does not shower very often as she cannot get up and move about,she has a seat in the shower but she still does not go in as she is scared of falling because she starts shaking when she moves. I am hoping somebody can help me determine what stage she is at ? And how long until it gets worse. She means everything to me and i want to do everything i can to help her to make sure she is happy( she looks very down at the moment)

Thankyou for listening

( i just need somebody to talk to that is going through the same thing)

9 Replies

  • Hi, HayleyRose. I'm very sorry for you and your nan. You are in a very hard place, and you have my most heart-felt sympathy. it is terrible to watch someone you love suffer so. This site is great, but joining this community isn't really to be wished for.

    The question of what happens next is one we all are dealing with and is often raised. I wish there were a good answer for you. People will tell you that there is no firm time line, and it's true for a lot of reasons. Psp seems to affect everyone a little differently, and there are subgroups of the disease that cause very different types of progression. For some the disease is mostly physical, for others the dementia is more acute. Some people go downhill very quickly, a matter of a year or two, and some slowly - 18 years is the longest survival post-diagnosis that I personally know of. All do go downhill, although may be plateaus on the way. During the second year after diagnosis my guy hardly changed at all.

    I can only recommend that you keep showing her your love and hang on as best you can. Try not to make the disease rule all your interactions, so that she can enjoy some distraction. (I have been bad about that, and my sweetheart recently said something to that effect.) Smoothies and things like Ensure might help her keep her weight up. Psp sometimes boosts a person's sweet tooth, which can help, too.

    Keep in touch, please. This community is full of good advice and people who care from all over the world. Easterncedar

  • HaleyRose I agree with all Easterncedar said, my husband was diagnosed in May last year, we think he has had PSP for the last 6-7 years. Every day is different with this illness, some days good some days horrible.

    You need to speak to the speech therapist, and also the dietitian, to help her with her weight.

    My husband eats really fast, does not matter what size spoon he has, and then he starts coughing.

    Just keep giving her all the love you have, take care HaleyRose. This site is wonderful.

    Yvonne xxxxxxxxxx

  • Hi Hayleyrose, Sorry you had to join, but this is the BEST site on the Internet. I can't help with your questions. Wish I could, but it's one we all want answering. None of us know "checkout" day. But it is the only thing that is guaranteed in this life. What ever way we leave this world. Unfortunately that your Nan has this evil disease. All you can do, is make sure she knows you love her. Make sure, who ever is her main carer is getting the right and enough support. Remember, she is still fully with it, under the no response in communication. Talk to her, without asking questions. Tell her everything about your life. Might be easier, now she can't tell you what and what not to do!!!!! Like mine use to!

    Please stay on this site. Rant and rave, cry, scream or share some good times. Anything! We are all going through the same thoughts, problems and KNOW where you are coming from!

    My husband has PSP and quite frankly, it sucks!!! But you already know that!

    Lots of love


  • Sadly I welcome you. I have been at this site for a bout 3 maybe 4 months and its/ they have really brought me through alot. As I share with all of the new comers; is a wonderful place to find answers for a newly diagnosed loved one or for the care giver.....unfortunately, it is also a help to the drs. who have never heard and certainly never experienced PSP. Go there Now. There are some other sites that can help you this being a big one . Depression can be a big part of PSP especially in the beginning (this I mean from onset of diagnosis). talk the neuro for antidepressents for Nan, also maybe a sleeping aide though some tea and or otc sleeping aides are out there.

    First of all know that no matter what PSP can take away from you, it cannot take away your love or wonderful memories you share with your Nan (I am taking it that is your grand mother?)

    Second, be take a deep breath and become informed and your nans advocate, she is going to need someone (it may be your parents or a combination of lots of family members) But may I impress upon you that someone (probably you ) needs to really get to know the needs of your nan. Family members have their own lives (as do you) and it is difficult to be there for get prepared and stay prepared.

    3.....There are many agencies out there, start with your neurologist for any info they can give you.

    4....You'll need a pt (physical therapist) they will teach how to walk and even how to fall; Stand and sit down. an ot (occupational therapist) will help nan to approach the silverwear, use the bathroom, do puzzles to keep mind stimulated,and I don't know what else as my husband did not have a very good one. A speech therapist who has the potential to help nan to strengthen oral abilities. again we did not have a lot of help from her though she did help with swallowing thin fluids: short quick sips. No bottles (like soda) or anything inwhich the fluid comes out too fast. Straws may be good.

    5....small, sips, small bites. more frequent meals. 3x daily takes as much calories eating as getting in.

    6....vitamins (liquid form)

    7... small but consistent exercise.

    I sort of broke this down numerically only to let you know the stuff I can think of not in order of importance EXCEPT FOR 1 AND 2....You will know what is most important and they will change as all of our needs do......If I may add one more thing to your #1 or #2 Is your health both physical and spiritual. Remember your needs go and have fun every once and a while and PRAY daily. Do not forget or please know you have a higher power willing to be with you. So take care, ask for help theres people out there and a Man Upstairs, Seek joy and hold on to it


    My flesh and my heart fails: but God is the strength of my heart, an my portion forever


    I (Jesus) will not leave you comfortless; I will come to you! John 14:18

  • Dear HayleyRose,

    Sounds like a super relationship with your Nan it will be a great comfort to her to know you are helping to get the services she needs. From my limited experience and what I’ve learnt from this site, irrespective of intension, the available services in Britain (if that’s where you are) are very much a ‘post code lottery’.

    Accessing the help needed can be difficult at the start, as it will require the skills of a multi-disciplinary team, who know about the detailed requirements of those living with PSP. Many professionals in the relevant disciplines may not even have heard of PSP hence the difficulty (the PSPA provide useful booklets to help professionals in this regard). I found that once ‘in’ the system matters improved remarkably, so don’t despair “if at first you don’t succeed”.

    One resource outside the NHS and Social services that I found tremendously helpful was the local hospice. Hospices do so much more than palliative care and were a mine of information regarding local facilities for making life easier for those who are very unwell.

    You mention your Nan has difficulty getting about; lack of mobility will be an ever-increasing issue. Advice from an OT on the most appropriate equipment to assist your Nan in her living environment is one way to make life easier and help avoid falls. There will be a lag in its provision so to prevent continually playing ‘catch-up’ ensure that those assessing your Nan’s needs are fully aware of the ‘progressive’ nature of the disease. It also seems from your post that your Nan is in fairly urgent need of nutritional advice, help from a speech and language therapist (re. swallowing) and help in the bathroom. There is means tested financial assistance available for care provision and for major structural changes to accommodation but it all takes time, so the sooner you start to research the options the sooner you can help your Nan make the best choices for her future comfort.

    NB. Our local hospice had a bath that could have doubled as a fairground ride, there was side entry to the seat, and it raised, lowered, tilted forward and backwards, had Jacuzzi style jets and a shower attachment. We never needed it as, following a variety of bath seats and a chair in the shower, we had a wet room installed, but it was a magnificent ‘beast’ of a bath; if your local hospice has something similar your Nan may get to look forward to bath-time until suitable arrangements are available at home.

    Very best wishes to you and your Nan and I hope you soon get all the help you need.


  • Thankyou for all your advice, its so good to know that we are not the only ones. Its nice to have someone to talk to about this stuff :)

    my nans does currently have physio every week, she did have a carer come and help her get up and ready in the morning but she said she doesn't want one anymore. she doesn't realize that she cant do these things anymore (she refuses help)

    she has walking aids to help her get around her bungalow but she wont use them as she is too proud.

  • What a lovely picture! Your Nan has a beautiful family. She is a lucky lady to have such a caring family.


  • Hello again HayleyRose, at the risk of sounding trite, perhaps you could try explaining to your Nan, as kindly as possible, that the old adage "Pride comes before a fall" could have been written with PSP in mind!!!

    Kind regards, Jerry.

  • jbarriebentz--=we in coquitlam,british Columbia,Canada......

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