HELP AND INFORMATION NEEDED

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hi i am writing this to see if their is any one who has or knows of people with psp.unfortunatley for me and my family both my parents have this awful disease.sadly my dad died january 2009 and my mother is in the late stages of this disease.as far as we are aware and dr nicholls from queen elizabeth hospital in birmingham they are the only two married couple to have this disease,and he was as shocked as us when he told us about mom having it and when we told him we knew about it as our dad had got it he couldnt believe,as my dad was diagnosed by a different doctor from a different hospital.Any one who knows about this disease knows how cruel and awful it is but to see both parents with it has completley destroyed me and my family.i would be grateful if any one could let me know their experiences please.from wendy

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    my mum has psp in the late stages too only found out this week , the dr have said she has agressive parkinsons too ,there is not alot of information on psp the dr's say it could be weeks or months that mum has left i don't know how quick it is progressing , i just don't know what to expect , sorry i can't say much more but i don't know anything other than what i read on hte internet.

    I am so sorry to hear that you have been through this with your dad and now with you mum stay strong and take care deanne

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    hi deanne im realy sorry 2 hear bt ur mom we were told 4 13yrs that mom had parkinsons and then 2 find out that she had this awful disease was devastating.were do u live deanne,have u got any support ive got 3 sisters who r great and 2 brothers but they dont do 2 much.please keep in touch and hope i can be some help 2you as its an awful disease take care x
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  • Posted

    hi deanne if u wud like 2 email me 2 c how ur moms gettin on my email address is **** its nice 2 talk 2 sumone who understand what ur going thru as no one as ever heard of this disease regards wendy

    [i:1b047bec76][b:1b047bec76][color=green:1b047bec76][size=9:1b047bec76](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

    If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.) [/size:1b047bec76][/color:1b047bec76][/b:1b047bec76][/i:1b047bec76]

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  • Posted

    hi wendy,

    i am in nottingham , thank you for your reply i know what you mean about the dr's saying one thing then it being another my mum has been ill for 20 years with other things but alot of the signs of parkinsons and psp was maked by them they took your email off i am on face book or bebo maybe we can get talking that way , i have 2 brothers that are good hope to here from you soon deanne

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    hi i have just registered now so i will know when you have got back to me thanks again deanne
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  • Posted

    hi deanne my daughter has set me up on facebook so we can chat thru their now if u want 2,i havnt got a profile my name is wendy holder,what is yours please x
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  • Posted

    hi mine is deanne lee-hodgkinson on facebook thanks chat soon
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  • Posted

    Hi Wendy, I am so sorry to hear of your experience with PSP. It is indeed a devastating illness, even more so because ther is so little Dr's know about it. My wife has been diagnosed with PSP following many years of other serious illnesses. It seems to be progressing pretty rapidly and it is difficult to know just what to do. I am my wife's full-time carer and we are both in our late 60's. It is exhausting with day to day care but I do it gladly as I love her more than life itself. Am I wrong to find myself getting frustrate and annoyed at times? I hate myself within seconds but it just seems to creep up on me. I hope your situation improves and that research will find some solutions to this horrible illness. Take care.

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