Hi Everyone

I missed you all and think about everyone all the time been between California with mom and then in Nevada taking care of Aunt bev they are both in the hospital no middle finger from aunt bev this morning so I knew she did not feel well took her in just to get checked out they wanted to keep her for a few days It amazes me how little they all know about PSP they keep treating her as if she has asperated so she cant have anything in the mouth, she is pissed they do not seem to understand that her meds make her mouth so dry that she can choke on her on dry mouth or her stringy saliva I fight with the doc everytime I go in to read up on PSP and check out this web site so they will get a better understanding of what people with PSP go through everyday, anyway i am back and going to start reading old post to check in on everyone. Hugs

kryste

10 Replies

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  • Hi Kryste. Great to hear from you. Keep up the good battle. Love to mum and aunt Bev. Take care Maddy

  • I AGREE WITH MADDY

    U RQDOING GREAT LOOKIGN AFTER, YOUR MUM AND AUNT BEV

    KEEP TI UP AS LOGN ASYOU CAN

    LO;L JILL

    :-)

  • i missed you i hope things are going well with you and your family

    love kryste

  • it is going quite well at the moment kryste

    we have just spent a week in N Yorkshire on a self =catering holiday -another 1st for my partner and despite the weahter being mixed it was a good break = i still fell quite a

    few times but no visits ot hospital with the cuts and bruises i sustained sp that was good

    keep posting plz we need to know how your aunt bev and y r mum r doing

    lol jill

    :-)

  • Hi, I sometimes wonder if doctors can actually read, or know what the Internet is for! To me, if I was a doctor, I would be rubbing my hands with glee, that I had a patient with a rare disease, that nobody knew how to cure. I would make it my life's ambition, to be the first to cure that person! It's called a challange, perhaps that's the first thing they drum out of our medical students, can't have them thinking for themselves. Goodness gracious, they might actually become something in the world!!!

    Lots of love

    Heady

  • I AGREE WITH YOU ITS LIKE ONLY IF MAKING MONEY IS INVOLVED DO THEY SHOW ANY INTEREST

  • Indeed ! I am just a caregiver and have read more formal writings than you can shake a stick at. Do you realise the only thing they have cured (if you want to call it a cure) is cancer? Illness is too lucrative to get rid of!

    hah

    AVB

  • KRYSTE HOWS IT GOING MATE OK I HOPE AND WHAT ABOUT YOUR TRAVELS I HOPE YOU HAD A GREAT TIME OF IT ALL

    SEE NYER PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

  • good to hear from you sorry I have been away so long I hope all is well

    hugs Kryste

  • CurePSP.com is a great site. And as far as the disorder. I told the neurologist well....asked if he had PSP? The doctor geared his tests toward the disorder and everything lined up to be just that, granted true diagnosis can only be determined post mortem. when only 5 or 6 per 100,000 people get it, it has few specialists and even fewer ppl studying it. PSP has no cure nor meds to slow its fury. Quality of life is all we can work toward. And the days that are good we must hold on to them like treasures. When they are bad, we must, at the end of the day, give ourselves a hug that we fought the good fight, and move on. In America, we have internists who take care of old ppl. (My husband was 51 or so when he got it). They seem to have a familiarity with it though he also has a neurologist. His PT. OT, and Speech Path had never heard of it before....so I enlightened them with a packet that I received from CurePSP.com. Look into getting the packet and share it with those who are "helping'" you. Have a good day . Well must go

    AVB

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