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Thread: mum

  1. #1
    noor
    Guest

    mum

    Hello. We are new to this forum, but my mum was diagnosed with MND at the end of may this year 2012. she celebrated her 57th birthday with the queens jubilee in hospital. We are a asian pakistani family who live in wales. The Medical team involved in mums care say that she is the first asian woman in uk to have this diagnosis. mum had ongoing health problems like fibromyalgia, arthirits for a while and she was under alot of consultants. she worked in the hospital alongside with doctors and knew something was not right with her body, but apparently 'it was all psychological'. her left knee went first, then her left side became weak, her left hand shrunk and stopped working, by that time her left foot was dragging and she was walking with a zimmer frame. in between she was seen by alot of consultants, had been admitted a fair few times with falls but still her condition was overlooked. the frustration at being told its just lack of vitamin D and all in her mind was a shame. We had to kick up quite a fuss for her to be seen AGAIN by a neurologist and then this kind man had an answer to her illness which had taken a whole two years for her to be diagnosed. His team have been invalubale to us, and the manner in which they helped us is unimaginable. the care and compassion provided wonderful. since the diagnosis, mum has deteriorated rapidly. she is totally bed bound, speech and swallowing totally impaired and our mum is locked in with this cruel disease. we are a big family who have been nurtured and loved by this woman. she is and was our best friend for all of us children. we talked to her about everything, and i mean everything. her kiss and hug made it all better. her spirit and strength is amazing. she has always been strong and independant. worked her way up through college to career and family.She attended the queens garden party. she was the form filler, accountant, electrician, cook, taxi driver, plumber , midwife and nurse- literally everything for the family. our world has been shattered. We are muslims but we are human too. As carers we have alot of emotions watching one suffer. Anger, confusion, scared and why? why mum? why this illness? Every individual is different, but as carers and the one affected; its absolutely hard and demanding. we have carers that come three times a day and they are absolutely wonderful. our angels. they help us look after mum as we have little children who are finding it very hard to come to terms with whats happening to their nanny. no more nanny sleepovers, no more nannies special toast, and no more of nannies hugs. It's totally heartbreaking. The roof of our house 'nanny' - has been broken, and no one can fix it anymore. For all of you that are out there, either with family or alone, affected in some way with this illness, or are carers; we are all together. we all share the same pain.

  2. #2
    Forum Member
    Join Date
    Jan 2011
    Posts
    283
    Hello noor,

    I am so sorry to hear of your mother's diagnosis and progression with MND, but be assured you are very welcome here. The forum has proved to be of great value to people seeking help and advice and, not least of all, companionship on the difficult road that we have all travelled in one role or another.

    Please feel that you can ask questions of the forum membership because it's very likely that someone here will have similar experiences to your own and will have first-hand information to share with you. If you'd like to speak to someone about your particular situation, you can call MND Connect on 08457 626262 or you can email them at mndconnect@mndassociation.org. They are available, Monday to Friday, from 9.00am to 5.00pm and 7.00pm to 10.30pm, and will happily advise you about Association facilities, branches and personnel in your area, as well as information on the practicalities, benefits etc.

    See full details by clicking the MND Connect tab at the top of this page.

    Hope to see you here often, best wishes,

    Mike.

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    8,067
    Hello Noor;
    Welcome to the site and I am extremely sorry that you find yourself here. It is so nice to hear about your mum although it did bring a few tears to my eyes. Being able to talk to a large close family does make this awful disease a very little bit easier. I am sure that if her symptoms were give to any of us, most would have suspected Mnd. The thing is that it is not that common and sounds even less common in Asian women and this was probably more confusing because of her other ongoing ailments. I don't know to much about religion, but I do know that most people are good. Wish you and your family all of the best and hope mum is not in pain, Love Terry

  4. #4
    Irene
    Guest
    Hello Noor,my heart goes out to you and your family your words fetched tears to my eyes .we are all in this together,its not about colour or creed everyone is a human being and deserve to be treated as one.You are obviously a very loving and close knit family and that in itself will help you through.We are all here for you ,go give your mum a big hug and say Irene and John sent that for you xxxxxxxx

  5. #5
    Gloria
    Guest
    Hi Noor, I am very sorry you have had to join the forum, MND has got to be one of the cruellest diseases of all, my heart goes out to your mum, you and your family, keep strong for your mum, love to you all xxxx

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