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Thread: My husband was diagnosed 6 weeks ago, still stunned.

  1. #11
    Forum Member Terry's Avatar
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    Hi Julip and welcome to the forum;

    Peoples heads are normally all over the place when diagnosed, I know mind was. Have some nice breaks away.

    Please feel free to ask any questions or give us tips etc.

    Best wishes, Terry
    Avatar is just up for ten days for Halloween.

    I'm sorry if people don't like it but it's something that I have done for years.

  2. #12
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    Julia I was so saddened to read your story that I had to reply to you. I hope that you are now feeling calmer about your husband diagnosis. My own husband became seriously disabled three year ago following a heart operation and overnight I became his full-time Carer. We had had only recently retired and had planned a world trip and were so excited, but the trip had to be cancelled. It was a terrible shock becoming my husbands Carer after our carefree life and I have wanted to run away many, many, times. He is now in Palliative Care and not expected to live much longer and I had hoped that I would finally be able to reclaim my life.

    Then, six weeks ago I was diagnosed with MND. I am still shocked and numb with grief for us both and wonder how we are going to cope but know that we will manage because I have already been offered help from some unexpected sources. Realising that your family and friends love you and want to help is better than travelling. I find taking one day at time does help. Reading the encouraging comments on this Forum has also given me fresh hope that perhaps my own life is not over yet.



    I can fully empathises with your feeling that your future plans have suddenly snatched away. I am sure that your poor husband is feeling doubly unhappy fearing the journey he has to face and that his diagnosis is making you so unhappy.

    My new Consultant told me that no-one knows when they are going to die, so not to think of MND as a death sentence just a reminder to enjoy each day.

  3. #13
    Forum Member Nettie B's Avatar
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    Dear Julip. I can add nothing to all the wonderful support, genuine empathy and advice that the members of the forum have given. I was in your shoes three years ago when my dear fit, healthy, dynamic husband was given the same diagnosis. The only reassurance I could give him was to impress upon him that we were in it together, through and through and I tried so hard to help him maintain dignity throughout his journey.
    We both had so much help from this forum. In fact I know that neither of us could have coped as well as we did without the friendships made along with so much practical advice. Do keep talking to these lovely people. Say whatever you want. Ask for advice, ask for emotional support, rant and rave .... whatever you feel helps at the time.
    It's good that you are planning special things. You will make wonderful memories.
    My heart goes out to you, hubbie and family. God bless you all XXXX Nettie

  4. #14
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    Hi Julia,
    My husband was diagnosed October last year and I have been through the same rollercoaster of emotions as everyone has described on here including anger and feeling sorry for myself and everything. All these emotions described on this thread are completely normal and it has probably taken me about 6 to 8 months to calm down. It has also taken this length of time for my husband to come to terms with it all too. I agree that it is a good thing to have things lined up to look forward to. We have been escaping to the Norfolk coast to a little caravan with our dogs. You might find us somewhere along Caister or Hemsby beach with our dogs. These days I do the walking and my husband just likes to watch the sea. He is happy to sit on a bench for half an hour or so. This is how we have been living with MND. We are coming home for the winter and we are both approaching our situation with a much more positive outlook. We are doing the best we can.
    I wish you and your family all the best
    Fru

  5. #15
    Hello Julip
    My mam had pseudobulbar palsy as it was then known,now it's progressive bulbar palsy ,one thing everybody with motor neurone disease is different
    My mam lived three years, the neurologist said 18 months,I was the same as you I was I would stand in the middle of the living room and wonder what is going to happen today
    She lost her speech after six months and couldn't stand after about a year , at the time there was a respite home in Leuchie that was managed by servite nuns ,she didn't like it after the nuns couldn't manage it any more -it's run by the MS society.
    She liked to listen to talking books,she been a big reader -liked autobiographies
    She like to eat fruit and I remember after she couldn't swallow that I came up with the idea of grating an apple, she loved it ,I also very finely chopped a mango she said it was divine ,she wouldn't have a peg fitted how she managed I'll never know ,even when she choked she managed to get over it.
    Even then she was sarcastic she said to the carers "check the fridge she'll kill me with food poisoning"
    We had a lovely occupational therapist who helped us speed up things and was so kind,the social worker was useless

  6. #16
    I remember the day we came out of the Nuffield hospital in Newcastle ,after a neurologist told my mother she had what was then Pseudo bulbar palsy ,I looked at her and thought what does this mean we knew nobody who had Motor neuron disease.
    We knew about David Niven that was it and then that was barely anything at all ,all I knew was my mother was ill and it was strange ,this was 20 years ago ,there was barely any information about motor neuron disease .
    My grammar is bad because I am on the autism spectrum .
    Now 20 years afterwards that I know I am Labelled with high functioning autism ,I understand why I didn't understand. If your husband thinks he can travel go ,my mother tried but it was too much for her and that was travelling from the dormitory in London across London .
    The MND nurses said she had the worst form of motor neurone disease they had ever seen, I found that strange but they had seen more people than me .
    She was 9 1/2 stones when she was first diagnosed and 3 1/2 stones when she died ,her arms and legs had suffered major spasticity ,she looked tormented but I didn't know if everybody who had motoneuron disease looked like this until I saw Diane pretty and Stephen Hawking , then I thought my mother must be cursed .
    I would stand in the sitting room and there were tears rolling down my face on the inside thinking what is going to happen to us by this time she could only say one word !more !I was terrified I hadnt cared for anybody completely and I knew that I was clumsy now in hindsight I know this is autism ,then I just feared I might injure my mother what am I going to do .
    17 years after her death I still feel like I've just experienced a bomb I'm still grieving I hope to be with her soon .
    Last edited by Streetwise; 8th October 2017 at 21:57. Reason: Autism

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