my latest hospital appointment was not so good,

hi every body sorry i havent blogged for a while but i havent

been to good so i throught i would keep you up to date with

whats been going on, addenbrookes changed my meds six

months ago and after three weeks i felt like shit, so they brought

my next appointment forward six months till last monday so i went

for a load of tests and its not good news the disease has spread

rapidly in the last six months its now starting to affect my left side

as well, my speech and balance are worse resulting in 4 or 5 fulls

in the last few weeks,i keep going to all these differant hospitals

and still cant get a straight answer whats going on, sorry for going

on but i will stop now before my blood starts to boil ,

take care all and best wishers,

ray

22 Replies

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  • Hi Ray

    Sorry to hear things are not going too well for you. Try and stay positive and keep your chin up. My very best wishes to you and your family and good luck.

    Take care...................SuzieQ x

  • hi suzieq,

    thanks for your reply and thank you for your best wishers

    im all ways positive chin up and keep smileing,

    take care ray xx

  • Welcome back Ray, you have been missed, although not good news from you we know how positive you keep which isn't always easy. Please take care and we will look out for further blogs from you.

    x

  • hi kay,

    how yer doing its nice to here from you its been a while,

    sorry i havent blogged for a while but watch out im back

    with a bang there is no way this bloody disease is going

    to kill me not with out a dam good fight, chin up and keep

    smileing,

    take care kay xx

  • Hi Ray. Sorry to hear you have not been feeling good. It was good to see u at the last Brentwood PSP meeting and having a chat. Don't forget that like Trevor there r good and not so good times but u must not give up! It is hard but we must not give in to the condition! Your mood is very important in fighting the condition. Trevor was diagnosed 8 years ago and we have found that keeping our peckers up does make a difference. U have always been encouraging and this has been very helpful. Please look after yourself and keep blogging. Kind regards. Denise

  • hi denise,

    hope you and trevor are keeping well, it was good to see

    you both at brentwood meeting and all going well i will see

    you both at the next meeting at the end of the month,i know

    your right we all have good days and bad days and there is

    no way this thing will get the better of me im not one to give

    up with out a bloody good fight, take care denise and give

    my regards to trevor,

    ray x

  • Awesome Ray. You just keep going and anytime blog. X Denise

  • Take care and make the most of every day i buried steve on the 7th march he always had a smile and the thumbs up we know its hard but keep fighting like my little soldier did

    xxx

  • hi,

    thanks for your kind words they mean so much, i do make

    the most of each day, i take each day as it comes any probs

    they get sorted, just keep your chin up and keep smileing,

    take care

    ray xxx

  • Hi Ray

    I'm sorry to hear that you didn't get good news at your hospital appointment. You sound like a fighter and a very positive person.

    I send you my very best wishes and hope you manage to remain strong.

    Take care

    Jo x

  • hi jo,

    thanks for your kind words and yes i am a fighter

    and normaly a very positive person but every one gets

    bad days but im buggered if this bloody disease is going

    to beat me,

    take care jo and thanks xx

  • Hi Ray. Sorry to hear you're feeling frustrated with the medics, I sometimes think they are only one step ahead of us on this disease. But you always come across as a very positive person and I hope this will see you through this disappointing time. Your other friends are right, there are some good days round the corner and you'll make the most of them for sure.

    Take care

    SheilaN

  • hi sheilan,

    hope your keeping well, im just frustrated with every thing at

    the moment because i just feel like a guinea pig half the time

    pasted from one dr to another, your right i am a positive person

    and i will fight it right till the end,

    take care and thanks sheila,

    ray x

  • hi guys...i am new to this place...i am here to learn and to share whats my side of story...my father has been diagnosed with psp and i am really shattered..i am a dentist my self back in india abt to complete my postgraduation.so getting to know abt this disease makes me feel really bad and i feel scared of worse outcome.

  • hi ray

    i hav ebeen away for 3 nights for my dad s 90th brithday party!!

    and i am so sorrry thartt the news form the hsopital si not good

    at least they hrought yoiurappt fwd and they will no doubt have somethign form all the tests theyhave done

    but it is difficult ot be positve 100% of the time hwen you r feelign so ill

    keep blogging

    lol jill :-)

  • hi jill,

    hope your keeping well and hope you enjoyed your party,

    yes it is difficult to stay positive all the time but im a strong

    willed person and there is plentey of fight left in me yet i hope,,

    take care and keep smileing,

    luv ray xx

  • Hi Ray

    How are you feeling now? I sometimes think that PSP and CBD patients are treated a bit like guinea pigs by the doctors as they dont know enough about the illness. I Look forward to seeing you at the next Brentwood meeting and an update of how things are progressing. Keep your chin up Ray.

    Take Care

    Jenni

  • hi jenni,

    hope your keeping well im not to bad thanks ive had better days

    and worse ones but im not one to give up with out a bloody good

    fight, i have to be at the next meeting otherwise you wont have any

    one to chase round the room,

    c u then

    ray xxx

  • Sorry to hear you're not feeling so good, Ray.

    You have a good fighting spirit though, so keep positive...

    I hope we'll see you in Cambridge on 31st.

    Take care Ronc

  • hi ronc,,

    thanks for your reply im still not feeling wright but i wont

    give up without a fight i hope to be at the next meeting if

    they let me keep my driveing licence , im still waiting to here

    from dvla,

    take care ray x

  • Ray

    Where r u..?lol Jill

    :-)

  • hi jill,

    im still here i aint going no where yet, i hope u are keeping well

    how did the move go i hope its easyer for you being on the ground

    floor, sorry i havent been on lately but my hands have been shakeing

    so much i havent been able to type but im back now and feeling good

    take care,

    luv ray xx

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