Hello from spain i need your experiences for my father with psp

Hi everyone..i,m from spain i´m 37 years old and i now i´m taking care of my father ( 83 years old) who is suffering PSP and Dementia with Lewy Bodies (both because they can not rule out one of these) from one year to now i had been fighting for him but its impossible get better, his eyes don´t move and blinking its out, dont walk well, he seems drunk and everytime he try he falls to ground. its so hard see how your father lives this situation, i want to know if somebody here was diagnossed whit psp and lewy bodies too and how is the future i have to live...( sorry for my english ) i send u more hugs and strenght for all.

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  • Hola Marusela

    So sorry to hear that your father has PSP. I don't know what information there is for you in Spain but if you look at the web site pspassociation.org.uk you will find a lot of usefull information about the condition. This site is good for gaining different views on how people deal with the problems associated with PSP and CBD.

    When my husband was able to walk the only way to stop him falling over was never to let him walk on his own. Here in the UK we are able to have equipment, which meets the changing needs of each individual, from the NHS after being assessed by an occupational therapist or physiotherapist.

    I hope that you find all the help you need in Spain.

    Love Lorri

  • oh lorri thaks a lot for your words, let me tell you that here in spain there are not fundations or spanish websites only a medical information when he was diagnosed,

    I have the doubt if the persons who have psp can have also bodies lewy at the same time, because doctors says yes, and this diseases looks alike and are confused for doctor but i dont know similars cases in others persons....i hope somebody like mi situation can tell me more about my question....beg you pardon again for my english i send all people here a hug thank all. thank lorri again.

  • Don't worry about your words you are communicating well. Sorry about your father and PSP. My wife has PSP. I've found that there are no set rules as to how each patient developes over time. For some the disease moves quickly for others it is a long journey (up to 11 years or more). Also the symptoms can be drastic in one PSP patient and small or less in another patient. It's the part of PSP that I find most disturbing. You may know what the symptoms are but you never know when they will come on your patient in a huge way. They say there are stages but from the posts I've read others always say "I THINK he is in the fourth stage...". This means that stages are good to know but when you reach a certain stage is variable in each patient and the opinion of the caregiver. I'm afraid that we are dealing with something that varies in each patient, to some extent. We had lunch with another PSP patient who has had it about the same length as my wife. His speech was horrible and we couldn't understand him but his mobility was only slightly effected. My wife's speech is good but her mobility is terrible. Hope this helps. Wish there was better news.

    Jimandsharynp

  • jimandsharynp thank for your time for me and share experiences....let me tell you, my father is in 6 stage of 7 ( doctor says me that ) the last stage 7 will be a patient in bed but nowadays no its my case yet, my father´s symptoms are he can´t walk because has not balance, he can´t eat normaly, his eyes looks iced no blinking and he is always rigid, sleep very bad and take a medicine call Quietapina for sleep better, he used to take Sinemet for parkisonism and rigid but does´nt work, lewy bodies and psp share similars symptons and this is the reason my father maybe can has one or other or both.....now only can do its give him a give it a decent life to the end...I'm afraid that this happening so fast . thank a lot for experiences..i hope help somebody here too. happy Christmas all and please don´t give up. HUGS FROM SPAIN

  • Marusela, Glad I could be of some help. When do you think your father showed first symptoms?

  • uuuf if i think about it , i guess that its happen a few years ago, because he used to walk bad, and cough too minewhile he eat, he was sleeping all day, i believe that he is ill a lot of years ago but the doctor of his city says that its normal because he is an old man, when he came to my home at chritsmas i told with other doctor and she inmediatly send him to a neurologist and some test reveals he was has PSP and maybe years ago !!!! , i want to die because in his city nobody detect or diagnosed nothing but in my city yes they did,,,whata joke....this is my history.

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