Lost message again

I sat and typed a long message, but I think it got lost again, not sure why, but here goes again, I said in my last post that I think Heady is right about the moon, and stress, I have felt stressed for the last couple of weeks, not sure why, just this PSP symptoms are so unkind, to the person with the PSP and the carers, the laughing, and all the different symptoms, are hard to deal with. We went to the hospital last week and George joined the new trail that is being sponsored by the PSPS only taking blood from him. A bit worrying when the Prof Morris, said that PSP was not hereditary, but George's first cousin had PSP and some of his first cousins brothers and sister, he has all the symptoms of PSP. The doctor asked if he had any test, we said the MRI, brain scan, and a few others, he suggested George went into hospital for tests, we spoke about it and he wants to go. They are also going to do some genetic tests, which he said would take a couple of months.

Also he does not want to get out of bed, I try to get him up but it is hopeless I open the curtains, and windows but he still won't get up, does anyone else have this problem? Also the Prof at the hospital said George should have the Continuing health package, not sure how to go about getting it, but the nurse from Isobel hospice said you and assessed by the community nurse, I have asked the doctor for the last three months to see them, I feel like I am having to be so aggressive to get things put into place, which I was not like before, and it is taking its toll on me. Sorry to be so miserable but had to let of some steam hopefully this message will not get lost. Love to you all and Heady hope things are better with you xxxxxxx. Yvonne xxxx

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  • So sorry you are feeling this way Yvonne. Are you getting any time to yourself when you can meet up with friends and have a good laugh? Lack of sleep pulls you down as well, I know from having nearly 3 years of very little. I've never had a problem with my husband wanting to get up. At 5am every morning his legs go over the top of the hospital bed sides as he tries to climb out. As he can't raise his head from the pillow he doesn't get very far but it's a job to keep him in bed.

    It was the Hospice that got the ball rolling for us to claim Continuing Health care. It means my husband can have a night carer 5 nights a week so I can get some sleep and have energy to cope with what each day brings. We don't contribute anything although after 44 years of paying National Insurance, my husband has done his share of contributing. It's well worth pushing for it but if your GP isn't helping ask the hospice to speak to him for you.

    I hope PSP isn't hereditary as we have 3 sons but I'm not going to worry about something that may not happen and that I can't do anything about anyway. I'm sure the boys would have thought about it when they see their dad but I've told them not to wait for retirement, if they can afford it and it's legal, do what they want to do now; and they are.

    I hope something/someone will come along and give you a feeling of peace and comfort as we all go through this relentless experience.

    Sending you a big hug.

    X

  • AWHOOOOOOL AWOOOOOOOL YVONNE AND GEORGE WELL MATE IF IT EFFECTYS THE SEA TIDES I DONT KNOW WHY IT DOESNT EFFECT PEOPLE I THINK IM TOUCHED BY IT MIND YOU IVE BEEN TOUCHED FOR A LONG TIME NOW SO MY WIFE TELLS ME THE MOON IM, TALKING ABOUT MATE I THOUGHT I WOULD JUST DROP YOU A LINE TO TRY AND CHEER YOU UP A LITTLE WELL MATE THERE IS ONLY 1300 OF US PSP ERS IN AUSTRALIA MATE THATS WITH A POPULATION OF 24 MILLION SO YOU CAN SEE WHY THE DRUG COMPANIES DONT WANT TO DO ANYTHING ABOUT IT=== IT WOULD TAKE THEM YEARS AND YEARS TO GET THERE MONET BACK MATEY SO NOT A QUICK TURNOVER IS IT

    SO IM RELYING ON OLD MOTHER ENGLAND OR AMERICA TO COME UP WITH AN ANSWER FIOR THIS PROBLEM WE HAVE -UNTIL THEN WE HAVE JUST GOT TO MUDDLE THROUGH THE BEST WE CAN NOW C;MON MATE LETS SEE YOU SMILE THATS BETTER

    THATS RIGHT GEORGE ISNT IT IM NOT SURE HOW MANY IN ENGLAND HAVE IT BUT THE WAY THOS FORUM IS GROWING QUITE A FEW I WOULD THINK WELL YVONNE AND GEOIRGE I WISH YOU ALL THE BEST MATES MAY YOU HAVE THE LONG KIND OF PSP GEORGE IT WAS GOOD OF YOU TO GO TO THE TRIALS AS WELL MATE SEE YER PETER JONES QUEENSLAND AUSTRALIA

    PSP SUFFERER AND MOON WALKER SEE YER MATES

  • Hi Yvonne, I know everyone is laughing at me, for suggesting that the full moon affects us all, but you check, the next time we are all moaning, look out and see what phase the moon is in!!!!

    Sorry to hear George is not wanting to get out of bed, is that all day, or just first thing? I do struggle to get S up, it gets later and later each day. As long as we have nothing planned, tend to leave him, until he wakes. Take the advantage of getting some extra sleep myself. Since he has been put on different medication for his bladder, actually getting some decent sleep. Some nights he even goes straight through. Even got some pads that work at times!!!

    For this Continuing Healthcare package, if your Doctor doesn't want to know. Ask at the Hospice. Everyone who seems to have got it, the hospices have been always involved! The one S was going to, were very hands on, got me in touch with the District Nurse, as they said she should be involved. Unfortunately, she thought otherwise, told me in no uncertain terms, that she was for end of life care. Won't be going to her for any TLC!!!

    Yvonne, you are doing a great job, don't underestimate your powers, you can be aggressive, I know it's not nice, I hate it, but, that our role now! Don't let it get you down, use those feelings to REALLY have a go at someone. Don't forget to keep using that magic word STRESS. Medical profession can't stand it, they have to jump!!!

    Sending you lots of love and hugs. Don't give up!!!

    Lots of love

    Heady

  • Thank you all for your kind words, really appreciate it, Heady I do believe the moon thing, when I spoke to the hospice she said she would get in touch with the community nurse, hopefully she will be nice, feel a bit better with the sun out? We are trying to convince George to go to Cyprus, just him myself and our three children for a week, he keeps saying he does not want to go, but I am trying would be so lovely just the 5 of us.

    Peter my son who is also called Peter he was in Australia for 2 years we managed to go there to see him George had a walking stick then, but we loved it we stay in Sydney for a week, then we went up to the sunshine Coast, which was beautiful, my son is home now, he still misses Australia, but he is back home now.

    Some times George will not get up until after 1 o'clock love to you and thank you once again Yvonne xxxxxxxxxx

  • Hi Yvonne, try to arrange some activities late morning, to give George a reason to get up. I often feel, what the point in getting up, just to have to deal with PSP and all its problems, imagine what it must like be for our husbands!

    S hates having to make desicions these days, perhaps George is the same, so make it for him and tell him HE IS going to Cyprus!!! Or be devious and try and make it his idea, as you need a break etc. etc. etc.!!! I'm sure you done it before PSP came on the scene, so,why can't it work now??? He is still a man!!!

    Lots of love

    Heady

  • Hi Heady will give it a go, my daughter said she is going to say she brought him a ticket to Cyprus for his birthday in June. Thank you will keep you posted on our progress xxxxx Yvonne xxxx

  • Well done! Hope you all have a good time. One things is for certain. MAKE SURE you you do!!!

    Lots of love

    Heady

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