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Thread: Breakfast.

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    Forum Member pete's Avatar
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    Breakfast.

    Morning guys,

    I watch the BBC breakfast program most mornings, today has been both special and terrible, the good bit was MND had a mention with the family of a MND chap who's story is being broadcast on Wednesday evening on ch 5 , it included a brief part when Steve was recording his voice to use in a synthesiser when he could no longer speak, a small portion was broadcast, and to be honest to my ears it sounded just like any other synthetic voice that are available on many speech systems ,but that's my own view, the good if there is anything good when it comes to MND ,is it looks a real and not staged or acted real life of a family dealing with the disease, not to be missed .

    The terrible bit was our Eurovision entry , I won't say my opinion ,but it's in the same class as always and will be amazed if it gets any votes . With the talent we have in the UK why on earth can't we get a decent song and artist to enter.

    As always wish you all a good day

    Pete
    All I need is a miracle

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Melanie_MND is offline
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Hi Pete,

Thank you for highlighting this - the film is called Filming My Father: In Life and Death and will be shown at 7pm on Wednesday 11 March on Channel 5. It looks to be a really valuable piece of awareness, and great that it's been picked up by BBC Breakfast.

The film is the documentary which was filmed over 4 years since the moment of Steve Isaac's diagnosis in February 2010, and shows the impact of MND on him and his family.

You can find out more and watch the trailer for the documentary on our website - www.mndassociation.org/filmingmyfather

There is also a behind the scenes video which you can watch here.

Best wishes,

Melanie

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    Hi Pete

    I seen the trailer last week for the documentry, got a little upset watching it as it really brings it home to what it is like living with mnd not just for the person that has mnd but also the family, I am looking forward to watching it although I will probably get upset but be worth it to raise awareness of such a cruel disease that until my dad was diagnosed March 2014 I knew nothing about it,.

    And as for the Eurovision I just think we seriously don't take it serious as a country as we never win or even come close as we are always pants, I totally given up on it

    All my love Jennie

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    Forum Member pete's Avatar
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    Hi Jennie,

    Good to hear from you, I admit it may be a difficult one to watch, but unless we use this to make the general population aware of just what MND means to both the sufferer and loved ones ,it will remain in the background , the great work by IBC and Prof Hawking film will be for nothing if we carry on as we are, I seem to be the only one that's really miffed at how we are treated by NHS , I am far from happy with the current diagnosed and then left to die procedure . Just maybe this will bring home the reality to those who think we all are like Steven Hawking enjoying the help he has had over the years,to our daily fight for the most basic help, and to be told I am lucky to have lived for this length of time all things considered , is at best insulting and no thanks to the medical profession .
    Anyway hope you have a good as possible day.
    Pete
    XXXXXX
    All I need is a miracle

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    I have read about this family this weekend. It is heartbreaking to read what they are going through as a family and the mixture of emotions they all feel. I will watch it, not so sure about my husband but it will be very harrowing.
    springtime
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    Forum Member pete's Avatar
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    Quote Originally Posted by Springtime View Post
    I have read about this family this weekend. It is heartbreaking to read what they are going through as a family and the mixture of emotions they all feel. I will watch it, not so sure about my husband but it will be very harrowing.
    springtime
    Hi Spring,
    I agree with you, it may well be very emotive but no different to what you face every day as with everyone of us having to deal with day to day life, If Jim choses not to watch ,he will have his reasons for not seeing it. That's what makes us all so unique ,for me it's the chance to see four years of MND edured by a real family , the MNDA had a short film made but it bore no resemblance to my life ,and the only other filmed experience of MND was done by actors , and as good as that was,this is real everyday people facing challenges.
    Pete
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    Forum Member pete's Avatar
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    Quote Originally Posted by Melanie_MNDA View Post
    Hi Pete,

    Thank you for highlighting this - the film is called Filming My Father: In Life and Death and will be shown at 7pm on Wednesday 11 March on Channel 5. It looks to be a really valuable piece of awareness, and great that it's been picked up by BBC Breakfast.

    The film is the documentary which was filmed over 4 years since the moment of Steve Isaac's diagnosis in February 2010, and shows the impact of MND on him and his family.

    You can find out more and watch the trailer for the documentary on our website - www.mndassociation.org/filmingmyfather

    There is also a behind the scenes video which you can watch here.

    Best wishes,

    Melanie
    Hi Melanie,
    Thank you for the information,and welcome to the forum, first time we have chatted ,hope we don't cause you any major headaches .
    Regards
    Pete
    All I need is a miracle

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    I think I shall sky plus it, not sure if I want to watch yet

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    Hi all

    I have sky plus it and watch it when I am ready plus I hate adverts going off the subject slightly last few days I have felt very bitter that all people that have MND and also close family that watch their loved one suffer with this awful cruel disease, just been thinking that if my dad was suffering like he is and was an animal they put him to sleep as its classed as animal cruelty to watch a pet suffer but when a human is suffering its tough you just have to suffer till the end and all I think is "HOW IS THIS FAIR" and I feel we all have a right and I am hoping that if more people are aware of how cruel this disease truly is then maybe the law may change.

    As for Steven hawking I understand that he is suffering with mnd and I have yet to see the film about him but how you see him with all the care and treatment and money he has isn't the true portrait of how mnd is for everyday people like you and my dad, don't mean offend anyone this is just my opinion but I feel like it's buttered up to be something it ain't and the true mnd is nothing like it is for him, he has had the disease for many years which must be terrible but I know my dads days are limited now and we not even a year since diagnosis, I know this is down the the different types of mnd I just hope that the documentary is an eye opener to people that know nothing about mnd


    All my love Jennie x

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    In truth, Jennie, I don't know that you can compare with Stephen Hawking with anyone. Every single one of us has our own journey. I know at least four of us on the forum who were diagnosed in March 2014 and we are all exhibiting similar symptoms at different times and, indeed, one of us is at the very last stages of her life, love her. Plus, I know people who have been affected for years. It is irrelevant who you are, or where you live, this disease is evil and invidious. It stretches every human emotion and affects everyone involved. Whether you suffer for six months, for a year, or for many years, the outcome is still the same and you have to live with the prospect of having a life limiting disease every single day of your life. I did see the Hawking film and found it harrowing in parts and often far too close to home. But I welcome this documentary because it is about an MND patient, not an actor, filmed in domestic circumstances. I think it will open a lot of peoples minds to the reality of it all. It is just dreadful for you to watch Dads deterioration. I do so feel for you. Love Joycie x

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