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Thread: I'm writing a book - open to input

  1. #1
    Forum Member
    Join Date
    Dec 2016
    Norwich, UK

    I'm writing a book - open to input


    I'm writing a book about being a carer for someone with MND.

    I started writing it as a means of getting thoughts out of my head. Writing is my form of self therapy, as you may have noticed. I'd like to turn it into something useful. Part 'this is my story', but also part 'here's some useful things to know'.

    My target audience will be partners, family & carers of people with MND who have not long received their diagnosis, and they are wondering what the next few months, or years, are going to be like.

    I've had a discussion on here a few times with carers about how people with MND tend to be short tempered with the people closest to them, but very forgiving of other carers. I'd like to explore this theme further in the book, and would be open your stories, if you wish to share them.

    It would also be nice to get the perspective of the person with MND on the above topic.

    Also, I'd like to learn more about what goes through the head of the person with MND, and their thoughts of facing death. This is a harder subject to broach, but I think would be good to have in the book.

    What I propose, is that if you are interested in including your experiences, you can either post it here or PM me. If I feel the story will fit into the book, and doesn't duplicate anything already written, etc., then I'll PM you before I use it. I'll also PM you the final version of what I would like to include, and be sure to get your permission first. I can include your name, an online name, or no name. But we can discuss that if your piece gets selected.

    I PROMISE TO NEVER INCLUDE ANYTHING FROM THIS FORUM, INCLUDING THIS THREAD, WITHOUT THE EXPRESS PERMISSION FROM THE AUTHOR. What is said here stays here, unless you expressly say you'd like it in the book.

    I might say that I've spoken with other carers or people with MND, and they said this or that, but I won't quote anything or anyone specifically, and I won't include details without permission. Doing so would be bad form in my opinion.

    Hanging in there, one day at a time.

  2. #2
    Forum Member
    Join Date
    Mar 2018
    Hi ,my husband was diagnosed with als in February. He had symptoms for a couple if years without a diagnosis.
    At first they said Parkinson's then parkinsonism type symptoms. Finally after a year his neurologist thought it was more likely multiple systems atrophy. It was only after being in hospital with aspiration pneumonia that she said she thought she'd have to reassess her diagnosis.

    After a few more tests she confirmed it was als with als related dementia.
    We've only just been turned over to the Mnd team, when our nurse came out she asked about the Parkinson's. I told her that was at the beginning,but she thought looking at Steve he had classic Parkinson's symptoms. I didn't realise you could have both.
    Anyway I'm rambling ,I only meant to say if I can help in any way I would be happy to
    Good luck Liz

  3. #3
    Forum Member Tim-griffiths's Avatar
    Join Date
    Oct 2017
    Lambourn Berkshire england
    My wife was diagnosed in October 2017, devastating news, as her husband I'm her full time carer. Don't get me wrong I will care for her until the end, but it gets increasingly difficult to cope, not especially with the disease, but her frustration and emotional liability, I have to walk on egg shells a lot as she tends to get easily upset. She has lost the use of her right hand, but luckily ( ?), Is left handed and tends to write things down, usually in a scrawl that I have to decipher to the best of my ability, she is pegg feed every three hours and needs help in dressing and undressing ( a big contrast to this time last year ). There are a lot of people in a far worse condition, with this dreadful disease, than my wife, but I know that as time passes we will eventually reach that advanced stage, and if I think it's hard now I dread to think what further down the progression path will bring. I'm trying to do everything carewise on my own, that's my duty being her husband for thirty plus years, for fitness and health and all that.
    Like Liz, I'm willing to help in anyway if required, ask the questions and I will reply to the best of my ability,

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