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Hi, my name is Su

swilberswilber Member Posts: 26 Courageous
I am ok today,  hope you are too?

Replies

  • crippscripps Member Posts: 412 Pioneering
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hi Su, @swilber, and welcome to the community. Very glad you could join us. Things are a little quiet here at the moment, just a touch of weekend-itis :smile:
    I'm good, thank you for asking, and I am glad to hear that you are 'okay today'. Does that suggest that you have a condition that means some days are really 'not okay'? Please tell me more, if you can. It is safe to do so, you're among friends here, and I would really like to get to know you.
    Warmest best wishes to you,
    Richard

  • swilberswilber Member Posts: 26 Courageous
    Hi Richard, lovely to hear from you. I thought it a bit quiet. Glad you are well.  You are right I have up days and down days but I get on with things and keep busy.   I have PPMS for 11 yrs now which does not have the same symptoms for everybody. You can ask me or look it up I don't mind.  Usually people assume so it's nice to be asked.  :)  
    I am friendly and would like to get to know you too.  What brings you on here?  What have you been looking for and have you found it?  I'm nosey can I ask where you are?
    Best and warm wishes to you and yours
    Su
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello Su, @swilber, and my apologies for not getting back to you sooner. My turn to be away from 'base' for a few hours today.
    I have looked up PPMS, but it would make more sense, really, for you to tell me what it means for you. It is 'you' who are important here :smile:
    I've lived too long - I hope - to make the assumptions you mentioned - I've spent most of my life saying "I'm fine", to those who ask "How are you" (or some formula of the kind) when they really do not want and could not handle an honest answer. And one way and another I've seen so many people go through the same.
    Next I must answer your questions and do so entirely willingly, though I should mention that some of it may be harder to read in places than it is for me, a quarter of a century on, to write.
    I first encountered Scope in a meaningful sense when my late daughter was born in 1986. Scope's primary focus then was Cerebral Palsy, though here in the community it is very different, and one of my daughter Jenny's conditions was CP. It was, in truth, the very least of her problems, but as Jenny's primary carer I encountered it a lot among her friends in hospital and at nursery. Jenny died in 1991, about three months after her brother was born, and my life changed dramatically in all sorts of ways.
    As primary carer to a massively disabled little girl and as a friend to many others who were similarly placed I experienced some wonderful things, but also some things which I would not want to see occur to my very worst enemy (if I had one).
    I am not, incidentally, in any way disabled myself - or at least not in any way that anyone would take any notice of. I have had mental health problems in the past, am familiar with loneliness and depression, but nothing really worth thinking about.
    In the 66 years of my life I have seen quite a lot of suffering of one sort or another, but since my own is essentially past I wanted to find a place where I could be useful to those whose suffering - of any kind - was still in the present. I discovered the Scope community and was recruited as a volunteer to 'meet, greet and where possible assist' new and existing members, which is why I have had the privilege of finding you :smile:
    There's more, of course, but that should make a decent start.
    And where am I? We can't get too specific on an open forum, but I live in Sutton, Surrey, in the outskirts of London.
    So unless anything there has put you off, I will look forward to hearing from you again.
    With affection,
    Richard
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @swilber
    Welcome to the community
    Scope
    Senior online community officer
  • swilberswilber Member Posts: 26 Courageous
    Hi Richard, wow what a full and interesting life. Amazing how strong you sound and so positive, what a survivor.  So sorry to hear how hard and sad some of your life has been and how pleased I am how you can offer those experiences to help others.
    I was diagnosed Jan 2007 having had my second child  Sept 2001.  I continued to work full-time as my children's father walked out Aug 2002 and we've never had any support from him. My diagnosis came after years of symptoms and no clue. Finally, I saw the right GP who sent me to Neurologist at the hospital and hey presto the clever lady had a very good idea what was wrong.  She said there are 4 tests to confirm my suspicions and we will get on with them.  Within 6 months she told me and I was relieved at first just knowing I wasn't going mad then with the realisation I cried.
    I continued with my job as I loved it but it only lasted just over 2 yrs as they announced they were closing the office.  I was offered early-retirement on ill-health grounds which turns out for the best.  This takes me to March 2010 in Reading, Berkshire.
    I decided nothing was keeping me in my unsuitable house, no job and no prospects of anything improving so I put it up for sale and decided new town equals a new start.
    That was 11 years ago and I now have a bungalow in Gloucester and a really happy life with MS.  My daughter was in yr 4 at School (aged 9) and I was introduced to a lady (Sharon) with an illness I cannot spell and was told 'you will like her, she's you 2 yrs ago'.   We got on like a house on fire and over time I helped her get her life back.  This inspired me and the next 10  yrs are part of my history.
    I have just got my PIP invitation as they 'who know best' are stopping my DLA.  I came across Scope while looking for help at home with this booklet  (now arranged) and found myself curious. I love chatting and helping so I joined. Then Richard appeared and I'm talking about myself with a stranger :)
    We have both made a start to get to know each other  ... take care chat again Susan

  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Welcome
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello again Susan, @swilber, and what a lovely post to receive. I admire your positivity very much.
    The physical training phrase 'no pain, no gain' comes to mind for some reason. I think I've known the pain but have gained a great deal through it. And that seems to be the case with many I meet here in the community. There is tragedy and pain, especially when 'they who know best' get involved, but there is also great strength, compassion and good humour.
    When Jenny died I was just 40 years old, I think, and about 45 by the time my son was starting school, so for a decade I'd been a primary carer and - as so many women know to their cost - being a primary carer qualifies one for nothing. I wanted from the beginning to work with people who were experiencing some of the things my wife of the time and I had experienced, but without qualifications and without experience that seemed to make any difference to anybody, the nearest I got to it was working in schools. I was a 'specialist' teaching assistant in a primary school for about 4 years, specialising in Art and supporting the Art teacher. The kids (99.7% Muslim) were wonderful, the work was wonderful, but school politics... Aieee...
    My first wife, incidentally, left me shortly after Jenny died, leaving me - in fact - for a 'younger woman'. To be fair, the younger woman did then have more of a moustache than I did. So I became a single parent for a while. It is sad how many dads walk out on disabled partners and children, though. The reasons are usually fairly pathetic, but then I tend to prefer women to men overall anyway.
    I've remarried since and spent about a decade as a learning support worker with children on the autistic spectrum. I learned a lot through that, including how badly the education system serves so many of our children.
    So now I'm retired, spending such free time as I have left with squirrels and birds in my favourite central London park or sitting here at the computer, meeting and greeting and trying not to frighten people :smile:
    Don't consider me a stranger, though. You're not a stranger tome. We have a great deal more in common than most people do at first meeting and, fortunately, none of what we have is as trivial as the stuff most people have to talk about.
    Been a real pleasure meeting and talking,
    I look forward to the next time.
    Warmest best wishes,
    Richard

  • swilberswilber Member Posts: 26 Courageous
    Hi Richard, 9 months have disapperd since we last spoke but I hope your Christmas is good.  Your park visits have been great I bet.  I can't type much as my hands now tremor so much.  I wanted to wish you a Happy, Healthy & Wealthy 2019.

    All the best
    Susan
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @swilber

    Good Morning it’s great to meet you today 🙏🙏🙏

    I’m one off the “Community Champion’s “ here on our site.

    Please please have a good look around & please let me know if you have any problems!!!!!! 
  • swilberswilber Member Posts: 26 Courageous
    Thank you Steve, nice to meet you.  I joined about 9 months ago but haven't been online much.  Typing is my problem as my hands tremors have got worse. I have an operation booked for end of Jan to help me hopefully. Regards, Susan

  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @swilber

    That’s my Pleasure 😇 

    Yes my left hand & leg 
    do similar so I am unable to use either!!!

    I do hope that everything goes well with your “Op” at the end of January????

    Can you please let us know how things go??
  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @swilber

    Welcome to the community  

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