IN DENIEL

my dad was just told he has psp. He really does not know what it is about. He is 72 . the docs just say there is no help for this and it is rare. My dad says there is nothing wrong with him it is just his age . should the family tell him that he does have psp and the symptons that come with it . we know he has to know sooner or later but how do you tell him. It breaks are hearts to tell him. the family is in fear he might just give up. HOW DO WE TELL HIM

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  • first of all let me say i am sorry to hear your father has psp he must have some of the symptoms now if your dr told him that he has it \\ so he must realise that there is something wrong with him like quiet speech harder to swallow falling over backwards or trouble with hes eyes there are several things which occur not necessary in that order but i think your dad would know it was not just older age thats what i thought at first i am 76 years old and i have had psp since 2004 but i knew really it was not just older age i was kidding myself i knew there was something up with me but found it hard to explain to the family and to myself \\i went to a specialist first and he said i had motor nuerone for two and a half years i was taking drugs for motor nuerone then he packed up hes practice and i went to another specialist this time she said i had parkinsonism which i ended up not having left that specialist\\ and went to another who finally diagnosed me with psp all the thing s he said i had them happen to me at last i had a name for my condition\\\\ not that it was a good name but i knew what i was up against im sorry to bring all this in but you can tell your dad that he ought to see a specialist a good one and get him to explain the many things that you can have go wrong with you in my case we all had a good cry and then got on with living with it

    its not an easy road to tread and hard on the carer but you have to persevere and im sure that your dad would not just give in life is still great even if you only have a little of it i have been down this road and im still here i also know that no two people are alike sorry to paint such a gloomy picture \\\\\\ not to many drs know about the dreaded psp so if your dad is not sure try another specialist or a dr who understands this syndrome good luck best wishes peter jones queensland australia

  • Hi rochestermn,

    In Denial,

    There is no easy answer to this question. We all have our different ways of dealing with bad news. You as a family are going to have to be exceedingly strong because PSP affects the sufferer even more the family. By telling your Dad it will allow him to come to terms with the progression of the disease, allow him to live and do the things he has always enjoyed while he can. Live each day to the full because the time sadly will come when this will not be possible. On this site we are all having to deal with the cruelty of this disease and feel so helpless at times. We all band together and support each other when times are bad. Perhaps at this stage a little information for him would be better rather than paint the whole dreadful picture. Give him time to adjust.

    Thoughts are with you, remember you are not alone there are others like you trying to do their best for their loved ones.

    Maeve

  • Dear rochestermn,

    I am so sorry to hear about your Dad. As with the others, there is no easy answer and it will be a day to day unfolding for all of your family as no two cases are the same. I think this is part of what makes it so difficult to bear in many ways. If someone could say: first this happens and then this happens followed by this over this sort of time frame- well, you could prepare in your head. But, that just doesn't happen. With my dear MIL we decided that a little news a bit at a time was best for her. As each new symptom presented itself we would fill her in on that being a part of the PSP picture and we did this because we saw no point in telling her about things that might not happen in her case.

    She is in quite an unhappy place with it now and I pray that her suffering will end soon. However, as I said to her yesterday, if she had remained in hale and hearty health she wouldn't have seen my husband and I half as much over the past 5 years. Also, I feel that having to cope with her and the cruel disease that she has been unlucky enough to have to endure has been a valuable lesson for me in compassion and I have been priviledged to get to know her so much better than I would have done otherwise.

    Good luck to you all and make sure you come by here often. I have found it to be a valuable wellspring of information and understanding.

  • Rochestermn

    Welcome to the most wonderful site of caring and understanding bloggers! This group is amazing with the support and sharing of information and compassion.

    You dad sounds so much like Jeff! His symptoms started to become evident back in 1998 by way of behavioral changes. By 2004 it became more and more apparent that something was really wrong. He was finally dianosed in 2009. By that time he was already using a walker, falling, difficulty with speach and vision. there was NO WAY he was going to take this sitting down and proceeded to spend enormous sums of money on 2 stem cell treatments and a few other alternative medicines. Nothing helped but he was in denial the whole time that he would be the one to beat this awful disease. Up to a month before he passed he still said that he would get better!

    The problem with his denial is that any treatments for the symptoms were forgone because he refused to deal with the reality of what was happening to him. There is physio and occupational therapy that can help the sufferer better cope and manage with their oncoming issues. I agree with Cyndy, tell him as you go and deal with it as it happens rather than dampen his spirit by the harsh reality of the future.

    PSP is truly an insidious disease!

    Sheri

  • daughterno1

    2 hours ago

    Delete

    Rochestermn, Sorry to hear your sad news. Mum is 76 and has PSP -we estimate she has had it for approx 5 years or maybe more. She has shrugged off the falls and only complained about the double vision. My sister and I persuaded her to have an MOT with the Dr as she had never been about herself in the past, only about Dad. Just before he passed away she began the falls. We took her to balance clinics and had physiotherapy. It was only when she began showing parkinson like traits that I asked the Dr if it could be Parkinsons that we saw a neurologist and he told us it was PSP because of her rigidity and her eyes. She has always been positive and always hoped for a cure but also wanted to know what was wrong with her. She too didn't accept she had a special disease at first but as we researched it and identified her growing problems with it she accepted it. However we have never told her it is terminal, she does however know it is progressive. Mum could not be described as resigned to it- she has recently made the most amazing comeback from a dreadful infection during which we thought it was the end for her. I think we have to taylor information to their needs. Let them lead the way. If they ask, tell them as that means they are ready to know. Much love, Dianne

  • Dear Rochestermn,

    I have just come to the end of 4 years of caring for Chris day and night. We were very fortunate in that he wanted to know what was ahead of him all the way so that he could get used to the idea of what was coming next and we could face it together, but I think we all have different ways of coping and if your father doesn't want to know just yet try not to worry. He will realize soon enough how ill he is and that will be the right time for him. It is much harder for the family this way and I agree that perhaps telling him as time goes on that what he is experiencing is a part of the illness may be the only way of getting him to accept. But then not accepting may be his way of fighting it and perhaps that will give him strength to

    fight each new symptom for longer. it's a hard path to go down and no one situation is the same as any other. At the end of the day you have to do what you think is right. Sorry if this sounds as though I'm sitting on the fence. I'm trying to think as if Chris had been in denial and how I would have coped. My thoughts are with you as you start this dreadful journey.

    teena2

  • I don't think there is a simple answer to your question because we all deal with it in different ways. My husband doesn't want to know life expectancy or how the disease progresses, he just wants to "play the hand" he has been dealt with. I on the other hand want to know everything there is to know about the disease so I am in a position to support him as much a I can as it progresses. He does know in his heart, he just doesn't want to be reminded by doctors or nurses. He wants to make the best of what he has got. I think I have to respect his wishes and we carry on as "normally" as we can. I think you will know when it is time to talk about it with him, if at all. I think you have to make the most of what you have together. I'm sorry if this is maudlin but we have to share the journey with them and help them deal with it as best we can.

  • My wife was told of the possible symptoms and that there was no cure at the beginning. Since then I only respond to her questions and nothing more. I make it a point to talk to family about it out of her hearing. We dwell on the positives of our life. Trips etc. We plan visits and trips. She was in denial even when first misdiagnosed as Parkinson,s but since has accepted it is PSP.

  • My husband was also in denial, but the social worker at my support group offered that it is a defense mechanism and that's how he is coping. Over the last year or so, when he asks why his eyes are getting worse or why his balance is worse I remind him that it is just the "progressive" nature of whatever it is that is happening and we have to deal with the symptoms. When he was able to use the computer he did read some things on PSP, and now he is more accepting that all this is really happening to him but he still never brings anything up about what might happen. I have suggested that someday we might need a wheelchair and a hospital bed, but he says that's a long way away. He does agree to the therapy and other treatments, so I just follow his cue. I don't really know what the right thing to do is, or if there is one right thing for every family. As the others have said, there's no easy answer. Stay strong and take care. We are thinking of you.

  • hi since dxd in dec 2010 )(i was on my own at the item) i have neve rbeen in denial but have accepted that this psp will shorten my life ]

    (it was a relief to have a name 4 all the symptoms and probs i was having)

    i have read up load sabout it and joined the PSP ASSOC (a grea t charity) and have now got the LPA in place for when i can no longer do anythign for myself or communicate.

    it has not been easy and it is so frustrating when i keep falling but i am (TOO) independent and want ot keep gettign out and doing as much as poss for as long as possib.le

    i have moved to a ground floor apartment in the wonderful building where i now live iwth myh partner and shoudll be so happy

    but i am over emotional and v weepy about anythign and everythign

    we all ha ve our own ways of dealign iwht illlness and i respect hyour dad's right 2 know or not to know

    same iwth friends and family - some do nto deal iwth it at all and cannot - others r great

    lol Jill

    and try and keep smi;lling

    :-)

  • Your question is a hard one and deeply personal. The only thing I can offer is my personal experience. We told my dad and my dad knew exactly what it meant when the doctor said "progressive" - he knew he was not getting better. Our loved ones with PSP are cognitive -they know what is happening to them. At first - my dad wanted to end his life but none of us could help him do it - -he didn't want to be a burden on his family. We assured him that we were in this together and that he was not a burden. My dad was involved in decision making but there were some things we did not discuss in front of him like end of life. For us - my dad knowing was a blessing -we had power of attorney in place, we knew what his wishes were, and we knew what treatment and non-treatment he wanted which took many of the decisions off of our back - I personally have no regrets or any feelings of guilt and I'm thankful my dad gave that to me. There were no questions on what he wanted.

    Love and support your Dad- -I'm sure you will do what is right - you are the ones that know him best and don't let anyone tell you different!

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