PSP

We went to the hospital yesterday and they said my husband had PSP we had a feeling that he had this horrible thing, he does not want to accept it, not sure how to go about telling him as he does not seem to understand, our is he just ignoring the truth maybe that is his way of dealing with it. We think he has had this for a few years, the old Doctors did not pick up any of this horrible PSP, until we went to Cyprus and he was not well a Doctor over there thought it could be PSP so we have lived with this for the last 9 months, and just confirmed yesterday. I am feeling so sad, as we can not do the things we want to, since May last year he has got worse, and I am doing the showering dressing etc any help with how to cope with telling him thank you Yvonne

30 Replies

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  • Sorry about your problem, you must talk to your social work department get a social worker and take it from there and get carers in to help you. Your G.P. should be able to it down and explain the diagnosis. Thinking of you and good luck.

  • Welcome to the site but it's a bitter sweet club to join. My other half had been struggling for ages and we was told all sorts of things even things were put down to his age he was not yet 70 at the time (now 77) he just seems to let this psp go over his head. He knows he has got it and he knows what the outcome will be but he just lives day to day. As he says no good worrying about something you cant change. Just take one day at a time and laugh when you can. Keep on loving. Janexx

  • I'm so sorry your husband has this horrible illness. I presume he was there when the diagnosis was given so ignoring it is probably his way of dealing with it. My husband behaved in a similar manner. When we heard the diagnosis we were in shock. We left the hospital and cried but after that it was a job getting my husband to talk about it. He didn't feel any different so tried to carry on as normal. We came home and I downloaded as much as I could from the internet, realised our pending retirement would not be as we planned and have since done as much as we can to make happy memories.

    Our GP put us in touch with the Hospice and they speak to my husband about the future. They have persuaded him to put his wishes in writing, something he wouldn't do for me.

    Get as much help as you can, now, don't wait. Think about any adjustments you may have to make in the future I.e. Alterations to the house to make showering accessable etc. ask your GP to put you in touch with the neuro rehab team at your nearest hospital so the speech therapist, occupational therapist etc can become involved now.

    Something I found very hard was taking over all the jobs he used to do about the house including all household accounts, DIY, mending the many things he broke by falling onto them, and not being able to have a proper discussion about important things. You will soon realise you are a very capable woman able to do things you never thought you could.

    You, and we, all have a difficult road ahead but try and laugh about something every day. Don't pressurise him too much in accepting what is happening to him and try and do as much fun stuff as you can.

    You are in my thoughts as the first few weeks while it is still sinking in can be very difficult.

    Best wishes and sending you a big hug.

    Nanna B

  • I stillmhace no computernor key bd s ammno able to post much but am thinking of u all ! Lol jill

  • Hi Jill, thanks for letting us know you are OK. I think of you every day. Has getting the CHC made a big difference? I do hope so.

    I think you do brilliantly on the computer and hope you can keep pos.ting for a very long time to come.

    God bless you.

    Sending many hugs.

    xxxxxxxxxxxxxxxxxxx

  • Wwww the ch c has not been given this time round Butb I am. appealing

    lol jill

  • well thank goodness you are ok -- i was worried as you had not posted for such a long time lots of love to you sharon xxxx

  • We are thinking of you Jill and hope the computer gets sorted Best wishes Flicka x

  • Excuse then typing

    Lol JILL

  • Yes, jill - so glad to hear from you. i had been concerned for you, too, and miss you! Love, Easterncedar

  • Yvonne, so sorry you have to go through the experience of this condition too. My husband was diagnosed in November after 18months of tests and stuff and wrong diagnosis. He too tends to ignore the condition and even went through a few months of poor me mixed with denial. I have found that dealing with the actual symptons he is experiencing and not telling him of what might also happen to him is working better, he can see that what I am saying is the truth and therefore I have his trust still. When he has difficulty with a particular task, I try to watch closely what is not working for him and put ideas in place to help him carry on independantly in that task for at least a while longer. He has difficulty getting up from the sofa, so he know has four stages to complete - if he follows them correctly he will not wobble when he gets up. I have also got him to stand still when he changes direction to ensure his balance again. I have been dealing with his condition for the past 18months (all of it alone as we did not have the diagnosis to get help), but hit rock bottom myself a week ago. Now help is flooding in and I am so grateful as the medical people confirm what we are doing is right.

    At some point your husband is going to have to accept help and understand about the condition. I have found with Malc that taking each day as it comes (there can be a lot of variance in what he can achieve) and getting the absolute best he can out of the day has helped him from being a person that sits on the sofa watching tv to actually waking and saying what he would like to do. Yes, he gets angry when he can't do something himself and I find then I need to put space between us by walking the dog, or going for a bath.

    I hope you have all the medical and social support you are entitled to. I don't know where you live, but if I can help with passing on information, contacts etc, please let me know. Remember to take care of yourself too or you won't be able to help your husband. x

  • It is such a massive blow when this is diagnosed , my brother had signs for many months before it was diagnosed as PSP. In my case I never had that conversation with him ,although I think he shared his fears with other people. I just thought time is ticking and we must try and get some special times in and we did. Whenever I asked if he wanted to talk or if he was worried about anything he said no. So in that sense I think we both knew , but we could keep the same relationship as brother and sister I thought It best to let him tell me . I believe he was very aware of this progressive illness and in his case he needed me to carry on as normally as possible.

    Sadly he died last August very peacefully,dignified

    and with his family around him

    Love pollyannajo

  • Xxxxxxxxx

  • Hi Yvonne, well you have done the most important thing, that's find this site! I can assure you it is a life saver. Don't know where I would be with out it. Just knowing there is someone out there, going through the same, therefore understanding EXACTLY how I feel!

    PSP is very hard, as I'm sure you already know. It's rare, so nobody has heard of it, including the professionals. Ask as many questions here as possible, we are all carers, like me, or sufferers of PSP. We will tell it as it is, no flowers, some will frighten you, some will give you hope, the rest will make you laugh!!! I have learnt everything I know, from here and so far am managing(just!)

    My husband is pretty much like everyone else, doesn't really know what is going on, doesn't want to know and because of apathy, doesn't really care!

    The main lesson we ALL have to learn fast, is take each day at a time. Be positive, concentrate on the things you can do, not what you can't!

    Have you got him to a physio yet? That is a BIG MUST!!!! There is a special group of exercises especially for Parkinsons, that do help PSP sufferers, they concentrate on BIG movements. S was referred to our local Gym, that was running a session, by the physio, on a GP referral. It makes a huge difference. With Christmas and all the shut downs, S has only just got back to his classes, from a three week break. I thought he had taken a down hill turn, but now he is getting back to how he was. Before Xmas, he was falling about once a fortnight, suddenly went to every day, sometimes twice a day. Now, thank goodness, the gap is growing again!

    This site is so you can connect with other people who know about PSP, you can rant, rave, scream, kick as much as you need to, nobody will judge, can't, because we ALL feel the same. We all share the good, the bad and the ugly!

    Sending you much love and hugs, as I know you especially need it at the moment. Life is not over, it's just changed! It's now up to you to make sure that your new life is just as happy and rewarding as the old one! It is possible!!!!!

    Lots of love

    Heady

  • Hi everyone thank you for such quick replies I have been in touch with the speech therapist she she going to recommend George for all different things, I am waiting for the doctors at the hospital to send a letter to our doctors which I am hoping will be soon so we can get him the help he needs, he still does not want to talk but that is fine will just take each day as it comes, he has been unwell for quite a long time so we are not sure how long he has has this horrible PSP we are thinking it is over 4 years. Our old doctors were useless it was only when we moved that they looked at things differently, the uncontrollable laughing when I am upset is hard to deal with and the eating so fast and then coughing and nearly passing out. I am sure after one episode of coughing he stopped breathing lucky our son was here as I panicked that has happened a few times. I know we have hard times to come but thank you all for your replies Yvonne

  • Yvonne, sorry that your husband is having troubles when eating. My hubby is more receptive to my suggestions, he has had 3 choking fits but has found that if we eat 'softer' food and he takes much smaller amounts on his fork, that this is so far working and as it frightens him to choke, he has been happier to eat too. Hope you work out a routine that works for you

  • Dear Yvonne, I know very well how awful the blow when you get the news. Shock, shock, shock and sadness. My guy went through a lot of denial, kept saying later that the doctor hadn't been sure, although we had two excellent neurologists and they did not use any weasel words, which is what he said at the time! He said a couple of years in that he had made up his mind that he was going to beat this disease and didn't want to hear anything to the contrary, so basically I get to be in charge of all the practical considerations and all the hard decisions. Denial is a comfort to him, and that's where we are right now. Things aren't as bad as they could be, though, and you'll find that as you go. PSP effects every person differently and symptoms come and go; there are long plateaus and sudden turns - the brain is a complicated thing. I can't add anything else to what has been said here already, except that this is a great place to come for comfort and help and advice. Hang on and keep in touch, Easterncedar

  • Yvonne, your post just brought back all the same feelings when, a few months ago my husband was given the same news, having been diagnosed with Parkinson's disease 4 years ago, we knew things were not right, his consultant only saw him annually and even tough we both knew things were not right, after lots of pushing for appointment we got one, as soon as my husband walked through the door he looked down and told us ... He said look it up on the Internet, after telling us the awfulness of it, we struggled and I cried lots but one thing I found to help and support is the PSP helpline and this wonderful site, and we will get through , sufferers and loving carers xxx

  • Have the conversation about the disease in front of your doctor/neurologist. This will get the point across of what PSP is and it's effects. My wife and I discussed the disease when she was initially diagnosed but didn't discuss it one more time after that. No need to discuss it unless the patient brings it up. Jimbo

  • I so agree with your comment, what will be gained by going over and over stuff that can't be changed, as long as you agree the way ahead. Although we have handled it slightly differently, I do not see the point in discussing all the possible symptons, that in my view will only drag the psp sufferer down and give them unnecessary topics to dwell on which in turn makes for bad days. I made the decision to let my husband know on a needs must basis, so he is handling the condition so much better than I think he would otherwise. He doesn't exactly ignore that he has it, more he finds other things that are more important to him each day and so far he is having more good days than bad - I have noticed there is no middle ground though. In the past week so much help from services and medical people here has been offered us that I was an emotional wreck with relief and am now sifting through what we should take now and making note of what is available as and when we need. So after getting myself rock bottom I am back to dealing with things in a very positive way - which rubs off on my husband.

  • Hi Gilljan, when you are going through all this help that has been offered. Make sure, that if you are not going to use somebody, because it is not needed at present, that you stay on their list. DONT let anybody discharge you!!!!! This is EXTREMELY important. The last thing you want to is to have to be referred to these people again, when you do actually need them!

    Lots of love

    Heady

  • Thanks for the info Heady, at present we have had all the services come to see us bar one, that is later in the month. We have made two lists with each of these sets of people, things for now and things we want to keep on a checklist for future. As it happens the PSP specialist advisor is currently calling monthly, and as she set up everything in the first place, I feel confident with the way ahead.

  • I am so sad and upset, At the age of 69 my husband has also been diagnosed with PSP after three years of unexplained severe falls and wrong diagnosis. He is also in denial, hoping that the doctors are mistaken, but I had my suspicions even before the diagnosis after researching the Internet and frightening myself to death, all the time thinking "No it can't possibly be that it's so rare!" He is getting worse every week, his balance is extremely worrying and scary, I feel I need to guide him everywhere he goes. We used to go on holiday twice a year and had such plans for our retirement and now I feel they have been stolen from us by this awful disease. I am doing my best to try to stay strong and positive for him but am finding it very hard, it's so difficult to watch the decline in him and feel so helpless, tears are streaming down my face while I am typing this. He cannot go out alone any more and I know he feels trapped and confused. He gets very upset and guilty because I now have to do everything when he used to be such a great help! He had a bad fall outdoors recently and took me down with him so I am going to buy a wheelchair for him so we can go out more as I'm too frightened to walk with him alone, but am unsure which type would be best for him, has anyone got any recommendations?

    I would be so grateful for a listening ear, someone who understands what we are going through and to be able to chat with them about my concerns....

    Thank you....Pat

  • Pat, with regards to a wheelchair I would suggest look at this website. nhs.uk/NHSEngland/AboutNHSs...

    I have just had my mum assessed as needing a wheelchair and have received a wheelchair for her free of charge.

  • Hi,

    Thank you for responding to my post, I didn't realise how helpful all of you would be, it's a great comfort knowing someone understands and I will definitely keep in touch!

    Thanks again....

    Love Pat

  • Pat have just had hubby assessed, he doesnt want to use a full blown wheelchair at present but appreciates he needs help with this balance when out walking. So he has opted for a wheeled walker that is also a seat, it is just the right thing for now, not saying a wheelchair won't be necessary in the future, but he is still able to have a degree of independance by walking still.

  • Hi GillJan,

    Thanks for your reply, my husband is also using a wheeled walker with a seat which is helping him a lot around the house. It's just when we go out I feel he is so vulnerable I am frightened of someone knocking him over he is so unsteady! He also thinks it would be safer for him so I think we will definitely look into the options.

    Keep in touch and thank you again!

    Love....Pat

  • Pat you are most welcome. I am so pleased to hear your husband is in agreement about the wheelchair. I have found that getting my hubby to agree to some things, that I can see would help him, keep him more independent and most importantly keep me safe, a bit of a trial at times. Right now Malc is doing brilliantly with just the stick when we go out, however it's when we are in busy places that the problem really presents - people don't move out of his way, quite the opposite - and when Malc changes direction quickly and under pressure is when he is likely to stumble/fall, the wheeled walker will mean people will have to walk round him and if he stumbles forward it is padded, unlike the pavement!

  • Hi Pat, really sorry to hear your husband has this evil disease. Mine was diagnoised Sept 13. But had obviously had it for years before, now I know the symptoms! I know how heartbreaking it is watching your loved one deteriorate in front of you.

    Advise! Well you have done the most important thing, thats join this site. It is a godsend. We are all carers or PSP sufferers, so ask any question, rant rave, scream, cry, what ever you need to do, we have all been there so will be able to help, or just be a shoulder to lean on. Nobody will judge you, unfortunately, NONE of your feelings, thoughts, will be new to us. We have all had dark days, thinking the worst. But equally, we all get good days that we can cope with anything, anyone, most all fight this awful condition that has been thrown at us.

    Your life is not over, it's just changed! You have to take each day at a time, be as positive as possible. Concentrating on what you husband CAN do, not what he can't! You may well be laughing now, thinking what a load of rubbish, but I promise, the days you can actually manage it, will be your good days!!!

    You must get your husband to physio NOW, it is so important. There are some exercises that they do for people with Parkinson's, involving BIG movements. They certainly make a different. Lots of people on this site go to them, all around the world! S has two sessions a week, one at our local gym, on a GP's referral, the other privately at home. When he hasn't had any for a while, like over Christmas, he went from a fall once a fortnight, to falling every day, some days twice. I was really worried, that he had taken a turn for the worse, but now, he is back doing the exercises, the falls are getting further apart again!

    You are right about this disease being rare. The main problem with that, is nobody has heard of it, including most professionals. If you have not done so already, get in touch with the PSPA, they are a wonderful support group, with helplines. One thing they provide, which worth its weight in gold, is information packs. Including one for professionals. I take this to every one S sees, dentist, optician, A & E, etc., they will even make sure that your GP has one!

    Last, but not least, you MUST MUST MUST look after yourself. YOU are the most important person, if you collapse, what would happen to your husband? It's very much like on the plane with oxygen masks, put your own on first, then help others. Again, I know you think I'm mad, but you do have to try!!! (If you find a way, please let us all know!!!!)

    You are not alone in this. We are all here, waiting to talk and help you, in any way we can!

    Lots of love

    Heady

  • Hi Heady,

    Thank you so much for your advice, I have already been in touch with The PSP association and phone them whenever I have a problem, they have also sent me the information pack you talked about.

    I will definitely keep in touch with you, your words gave me great comfort (even though I was crying when I read it) I seem to do that a lot these days, I wonder where all the tears are coming from!

    I do get a lot of help and support from my family who also feel helpless like me, it is very difficult for them as well, they not only worry about their Dad (who they have always been very close to) but they are concerned about me also.

    My husband is not having a too bad day today thank goodness, so fingers crossed I will get through this and do my best for him!

    Thank you again....

    Love....Pat

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