Sad? Devastating!

Well, I have not really posted on here even though I have read all the posts for a few years now. Believe me, they have helped so much. Sometimes I read and think - wow - that is us. My husband was diagnosed with PSP in Oct 2011 - a month before we lost our oldest daughter to cancer. There were so many personality changes before 2011 that I don't really know when this all started. We had a fairly good day today but then just before he wanted to go to bed I could barely understand him. I have had a glass of wine and would keep on drinking other than I know how horrible I would feel tomorrow! I know I will be back to being as positive as can be tomorrow. Thanks for listening.

14 Replies

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  • hi nanna I im very sorry for the position that you are in matey especially losing a daughter to another dreaded word cancer I really don't know how I would have coped we lost a grandson just two weeks before hes 7th birthday i do not think I have really recovered from that \\ I know the wine wont help only at the time so you were very wise to stop at the one glass well matey if you want a chat anytime there is always someone about with the time differences so come out of your shell and talk its better than bottling everything up inside you even if it does not solve the problem I have psp as well mate \\ take care nanna I all the best peter jones queensland Australia psp sufferer

  • Thanks so much for your kind words. We will keep trying our best to stay positive and enjoy the better days.

  • Hi Nana J, how on earth do you cope with a loss of a child, however old and at the time when you are also looking after another loved one with PSP. I am so sorry. It's also sad when a new symptom rears it's ugly head and the progression seems ever downwards. I know what you mean about the drink. I have more empathy with those who drown their sorrows since PSP but like you, know I wouldn't cope in the morning if suffering with a hangover as well. My husband is unstable enough; two of us would be disasterous. I hope you have other family and friends to support you physically and emotionally. We all need help.

    I hope you have an alright day today.

    Keep posting.

    Sending a big virtual hug from Nanna B to Nana J

    X

  • Thanks so much

  • HI NANA J

    I AM SO OSRRY THAT YOU FEEL SO SAD = I HAV E PSP DXD DEC.2010 AND AM STILL HERE UPRIGHT MOST OF THE TIME - THE WORST ASPECTS FOR ME ARE:

    BALANCE PROBS

    INCONTINENCE ISSUES OR APPROACHING T HEM

    COMMUNICATION PRO BS - DYSLEXIC TYPIGN (!)SPEECH GETTING MIUCH MROE DIFFICULT TO UNDERSTAN D AND AS U SAY COPIGN IWTH DEATH FO LOVED ONES IN MKY CASE MY DAD (AGED 92) IN SEPT LAST AND MY BELOVED GODMOTHER LAST WEEKEND (93

    I DID NOT HAVE CHILDREN IN MY 33YEAR MARRIAGE TO MY EX-[HUSBAND AND IT IS THE 1ST TIEM I HAVE BEEN GLAD AS A LOT OF THE PEOPLE ON THE SIT E ARE DAUGHTERS/SONS WHO HAVE TO WATCH THEIR PARENT SUFFERING FROM THIS PSP

    I KNOW YOUR DAUGHTER DIED OF CANCER AND THAT IS TERRIBLE TO C A DAUGHTER GO B4 YOU

    BUT I WILL NOT CONTINUE ON THAT NEGV NOTE AS IT COULD BE A LOT WORSE; YES REALLY

    LOL JILL

    HUGS AND XXXX TO U /YOUR HUSBAND

  • Thanks. I think you and Peter Jones are amazing. The way you can still communicate on this site. My poor husband hits all the wrong keys and just can't manage the computer anymore.

  • HELLO NANAJ

    I TOO HAVE PSP BUT THANKFULLY I HAVE AN AMAZING HUSBAND WHO MAKES MY LIFE WORTH LIVING SO LIKE NANNAB I HOPE THAT YOU HAVE SOMEONE WHO WILL BE THERE FOR YOU

  • Thanks for your kind reply. Our youngest daughter and family are close and are always there for us. So hard for her to see her dad like this after losing her sister.

  • Keep posting here Nana-talking to fellow carers and PSP sufferers will help you enormously - you can tell us all when you have had a bad day and we will know exactly what you are going through and we can enjoy with you your good days . It makes a huge difference to have contact .Georgepa

  • Thanks, I will keep in touch. Love all the positive posts!

  • You are an absolute marvel to keep going in such circumstances, it must be dreadful to have lost a daughter to another terrifying illness. . Tomorrow is another day and from past experiences I know that whilst I am in total despair , some somewhere is in a worse situation. Also you and me we WILL get through this and look back and wonder how we got through it. And we will be so thankful for friends and folk on here who supported us. Thinking of you and hoping you have a better weekend

  • Thanks so much for your kind reply.

  • Some days are very rough for caregiver and patient. However, you can't allow PSP to define who you are and who you've always been, and who you will be tomorrow. PSP will certainly TRY to define you but don't let it do so. Jimbo

  • Thanks, we will keep on trying but PSP is always there. Hoping for a better weekend. nana-j

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