New to group not to PSP!

Hi all, this is my first post even though I have been following people for some time, I just thought now was right for me, after going through 3 years of hell. My husband Rob was diagnosed with PSP back in December 2012 after being misdiagnosed with all sorts of illness!

Sadly my husband gave up the fight 6 weeks ago today, after being taken in hospital for the first time with a water infection (or so they thought) which turned out to be acute pneumonia. We didn't believe Rob was at the last stage of PSP until he contracted the infection. After being in hospital for 2 days, he was moved to a respiratory ward for his oxygen levels but none of his paper work was forwarded on regarding his needs and the PSP, consequently he was left to fall in the middle of the night! The next morning when my daughter and I went to see him, he was unrecognisable with black eyes, split lip and stitches in his brow! We had to insist on a CT scan to make sure the fall had not caused more damage. As after the fall he was unconscious and never came round again.

As much as we love and miss him, we know he is at peace and didn't want to live with this awful disease any longer.

I've read through some of your blogs and seen that a lot of you have cared a lot longer then I did for my husband and I really feel for you.

If anyone would like to chat or ask advice please reply.

Love Anne

Xxx

26 Replies

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  • Hi Anne. I'm so sorry for your loss but glad you have found some kind of peace knowing he is no longer suffering.

    Thank you for your offer of help. If you have been reading the posts for some time, you may know my husband was diagnosed in 2010 and fortunately he hasn't had any chest infections but I know if he does get one he will be at risk.

    Although you miss him, I hope, in time you will find life can be good after PSP.

    Best wishes.

    Nanna B

    X

  • Hi Nanna,

    Thank you for caring.

    I have a good support net work around me of friends & family but still strange living alone. I am taking every day as it comes.

    I hope you have plenty of support around you, as I know how lonely life can be even living as a PSP carer.

    All the best, stay in touch.

    Anne

    X

  • Dear Anne

    I am so sorry for your loss. I do hope something comes along to help you out of what must be a terrible loss.

    I am very sorry to intrude but I am quite young - the disease hit when I was 36 and I have spent 13 years fending it off but can't manage it anymore. I have falls, persistent pneumonia and other things I don't really want to describe. I look like I am writing to you. I'm not. My darling brother bought me a machine which guesses what I am trying to say with one-finger commands on a touch screen.

    What I would like humbly to ask is there anything that brought your late husband joy towards the end, which is where I am? It's a terrible thing to ask and if you like, please just ignore me but I would like one last thing to enjoy. I don't know how because all I ever did was work.

    Yours truly,

    Tim

  • Dear Tim,

    Thank you for your kind words.

    Months before Rob passed, we enjoyed a family cruise which he loved even though he was wheelchaired bound and could hardly see.

    He loved spending time with his friends and family, especially his grand children. Rob also found support and joy at a local hospice, where he went for lunch every week.

    I hope you have a good support network around you apart from your brother?

    I'm glad you are able to communicate on here to reach out to others in the same situation.

    Carry on fighting this horrible disease.

    Best wishes

    Anne

    X

  • Thank you

  • Hi Tim, I am really sorry to hear of your condition and really don't want to be rude by asking questions, but my sister has just been diagnosed with PSP and she is only 22 years old.

    As she is so young doctors do not really know what rate the disease is going to progress at, how quick did yours progress?

    so sorry again and hope you keep strong x

  • Tim, my husband enjoyed massages, especially if I used essential oils. He also liked doing light physical therapy while sitting in his wheel chair. Sometimes I hid objects in the room and he would try to find them just by looking. Also book tapes and music can be nice.

    Take care,

    Betty

  • Hello Betty. My darling brother Adam bought me a tablet to communicate and watch films. I don't know what I would do without it. Thank you very much for texting me - I feel a little abandoned. Love, Tim

  • Tim, I wish I lived close enough to help you. I lost my husband to PSP in January. Please feel free to text any time. Consider me your new friend from Texas. I enjoy watching films on my tablet too. I must say I am addicted to Netflix. You sound like such a nice guy. I am sorry you are going through this.

    Betty

  • Betty

    I used to spend a lot of time in Texas but I am a Brit. I liked it very much - especially the steak, tremendous. I can't travel anymore which makes me very sad. My best friend came from Texas. He was my boss, called Ed Holmes, used to run Citi Europe but died. I suppose none of us expects any of this and I am personally terrified but will keep on doing what I can.

    Love,

    Tim

  • Tim, my husband and I visited London years ago. I loved the rainy weather. For some reason I feel at peace when it rains. I know you are scared and hope that you find a way to find some joy in the little things. Sometimes that can be calming. If you give me your email, I can start sending you funny pictures and pictures of some of my paintings. I took up art while caring for Ron.

    Betty

  • Hi Anne, I am really sorry for your loss. I think the sudden loss due to infection or a fall, is something we all dread. At least your husband is finally free from this evil disease. Please don't let it take you as well. Learning to live without your husband, is PSP's final hurdle. You have managed to get over all the rest, take your time with this one! Grieve at your own pace and your own way. There is only one right way, that's YOUR way!!!

    Thank you for your offer of help, we all need as much as we can get. But this is a two way site, you still need help, somewhere to let off a bit of steam. I know this is your first post, but we are here for you as well!

    Sending much love and hugs!

    Lots of love

    Heady

  • Hi Heady,

    Thank you for your kind words and support.

    Yes it definitely was a shock that he was taken from us so soon. We really didn't think he was ready. Even though we know he would not of wanted to carry on living knowing what was ahead of him.

    I have good friends and family around me and I thank god everyday for that, as I wouldn't know what to do without them!

    Best wishes and love to your family

    Anne

    X

  • Hi Anne

    So sorry for your loss. it is so sad to hear how your husband passed away and it seems no one in the NHS understands what PSP is and how to treat people with PSP.

    My husband was diagnosed in June 2015 but he had been ill for about 2 years before.

    I fine it hard to understand the stages that they talk about.

    John has had Hiccup's for four days none stop and I don't know if this is part of PSP.

    When we are traveling in the car he is just in a world of his own even if he is supposed to be navigating the way.

    I find it very frustrating as we used to talk things over together, now I have to make all the decision..

    regards

    sandra

  • Hi Sandra,

    I know exactly how you're feeling. I had exactly the same with Rob, he used to be so loud non stop talking and life and sole and this horrible disease took it all away from him!

    I really feel for you and John. Not sure if the hiccups are a symptom of PSP, but I am sure someone will know on here?

    My advice to you is to get as much help and support as possible from local hospices and the PSP groups in your local area. Even if you think you do not need them yet, it's always good to know someone's there.

    I only contacted social services for help, the day before Rob was admitted to hospital, thinking i couldn't cope much longer. This was due to be put in place, little did I know I wouldn't be needing it.

    Best wishes

    Keep in touch

    Anne

    X

  • Hi Anna sorry to hear about your loss, this illness is so cruel. My husband also sits in the car does not talk, holds on for dear life, he use to be a building surveyor, loved his job, spoke about buildings all the time, now I have to take on everything myself. Welcome to the site, best thing ever. Yvonne xxxxxxx

  • Hi Yvonne,

    I just cannot believe how many people are affected by the awful disease and it is not more publised and the nhs are hardly aware of it!

    Like I said in my last post to Sandra, try and get as much support as possible even if you do not need it yet (but I do not know your situation).

    Keep in touch

    Best wishes

    Anne

    Xxx

  • How sad to read your story. It is not how we want the end to be, fighting for recognition.

    I am touched by your generous offer to be there for others.

    Its so good you have friends and family support but a hard adjustment ahead.

    I also miss the talking and energy since C has progressed.

    Best wishes, love, Jean x

  • I am so sorry for your loss but you have found a great site for support.

    Everyone on here is aware of what we are all going through or like you, have been through. Like others have said, this is the start of a new phase in YOUR life and it will be difficult but with the support of family and friends (including new friends you have yet to meet !) you will come through it because if you have been strong enough to survive through the hell of PSP, you will be strong enough for the future.

    Best wishes, Babs

    xx

  • so sorry to hear of your loss, I like you have not been involved with the group until today, I think I kept putting off reading the e mails as I knew they would sadden me further, unfortunately this has been a very selfish act as it also means that I have not been there to help others either.

    your post has touched me as you have lost your husband & still say you are there for others to chat, how lovely of you.

  • Hi. only 6 weeks ago we lost a lovely husband ,dad, and grandad, sometimes it seems like yesterday and others like today it seems so long ago. I miss him all the time but never wish him back the way he was at the end. Some people find that strange but if you haven't lived through this hellish disease you can't understand.

    Reading some of the blogs really saddens.me to think those being diagnosed now and their families have a difficult time ahead, but what I was told at the beginning is take any help and support you are offered even if you feel you don't need it yet. Really try to enjoy the time you have together with family and friends

    Love Anne

  • Thanks, Anne. Good advice. Love back at you. Easterncedar

  • Anne,

    So sorry to read your sad story. It really touched a nerve with me.

    My mum has recently been diagnosed but we think she may have had PSP for about four years already. She often falls and she has now got an emergency alarm that she wears round her neck. Her symptoms appear to be speeding up every week but we are just not sure exactly what to expect. Obviously we have read the symptoms on websites but there is never anything definite to work from for instance - timescales ....at this point the sufferer will begin to lose ....

    Mum walks with a four wheeled walker, has terrible difficulty getting up from a seated position. Her eyes drop involuntary and water when eating. She has a fixed stare and has become increasingly quieter at social gatherings. She gets tired very quickly and her short term memory is poor. She cannot write very well now and finds reading very hard as she has problems with looking down and blurred vision.

    It just seems like everything is being stripped away bit by bit and my mum is getting further and further away from us.

    Was it like this for you?

    CM

  • Hi CM, I'm so sorry for you as a family and your poor mum. I'm afraid there is no definite timescales everybody with this hellish disease is different. We think Rob had this disease for at least 4 yrs before being diagnosed (3yrs this Dec) but it was'nt until after his death that we pieced it all together. I have wrote before we had no idea until he had the acute pneumonia that this was the end even though this was his first infection and first stay in hospital even though my good friend( who I met through the local PSP group) husband is in and out of hospital with infections all the time, and is a lot worse than rob ever was. Rob had trouble eating near the end even asking me to feed him, he would have been mortified to even think of this even 6 months ago. This is what this dreadful disease does to you, taking all your dignity and confidence and so much more away from you. Sorry to rant and not really answering your questions but it is 8 weeks ago now that we lost him, and I'm feeling a bit down today even after having a lovely weekend with my family especially my 2 young grandchildren. I hope you can try and stay positive and make the most of being with your mum, I really miss mine at this time even though she is still with us she has vascular dimentia and doesn't really know what's going on around her, can't even tell her about my poor Rob. Thinking of you all out there love Annexx

  • My wonderful wife Anne passed away on the 1st February this year through that blasted psp we always went on 2 holidays a year and treated them as our honeymoon. We had a wonderful life together, it's only been four weeks since Anne died but it feels like a life time as I miss her so much people keep telling me it gets easier how can it, I cry my eyes out at night and wish to god my time will come so I can be with her again, is there live after death I wish someone could tell me there is as some of the pain will go away.

  • Hi just seen your post, haven't been on here for a few weeks, have moved, just trying to adjust. I know exactly what you are going through , even though it is 6 months for me, hopefully you have family to help you through this, the way I feel I am glad my lovey husband is out of the he'll be was living in. Xx

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