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Thread: Motor Neurone Disease - a personal request

  1. #1
    Master Strnglwhank's Avatar
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    Motor Neurone Disease - a personal request

    Just prior to lockdown my brother in law's Mum was diagnosed with Motor Neurone Disease. There will be some of you on here that have been affected in some way from this horrible debilitating disease.

    A little extract from her JustGiving page:

    At the age of 68, I have worked for over 40 years as a Physiotherapist in Barnet, for over 32 years in a special school for pupils with severe learning disabilities and complex conditions. I retired 3 years ago. I also worked for Barnet Wheelchair Service delivering chairs to people with terminal illness.

    It is ironic that on 24th March 2020, the day after lockdown started, I was diagnosed with Motor Neurone Disease. I am taking each day as it comes and realise that my*prognosis is terminal. There is no cure.

    I feel like I am on death row, with an already gradual decline in my mobility, loss of independence, reliance on carers and not even a last meal to look forward to as, at the end, I will succumb to pneumonia, probably then dependent on tube feeding. I have already been offered catheterisation and the tube into my stomach, as ‘these are better fitted earlier rather than later’. I am also booked in with the local Hospice at Home and, have recently recorded my voice for when I am reliant on a mechanical means of communication.

    On asking my Consultant if there were any ongoing trials of drugs that I could join, I was informed that all trials have been halted due to Coronavirus.

    Coronavirus has obviously been uppermost on the news coverage, but appears to have completely usurped routine hospital care and clinical trials for other important diseases. This year was due to be a big one for MND trials, which unfortunately have had to be paused due to the current situation. Things are resuming slowly but obviously Coronavirus has taken centre stage.

    There are around 5,000 sufferers in the U.K., but still no effective treatment for this debilitating terminal illness. It will be too late to help me, but hopefully will help future generations who contract this very cruel disease.

    If you can spare a moment & maybe a pound fire this brave & wonderful person I would be forever in your debt.

    Thank you for your time.

    https://www.justgiving.com/fundraising/diana-colville

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  2. #2
    A good cause- donated
    Dan

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    Master Strnglwhank's Avatar
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    Quote Originally Posted by DANH View Post
    A good cause- donated
    Dan
    Thank you Dan that's much appreciated . We've been going through a horrendous time not being able to give any support since isolation & watching what has been a rapid decline.

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    I, despite being 'of an age' and supposedly 'shielded' am disabled myself and have been waiting for more surgery since October 1919 that is now unlikely to come this year, and I still go daily to look after a lady friend who has very severe MS and now virtually bed-ridden or I suspect that she'd be dead by now. As a result of both our situations I'm well aware of how even the basics of NHS services are now being denied to many people who absolutely depend on them and who will die prematurely as a result. Covid-19 has exacerbated an already crumbling NHS, my operation had been defered twice already before the virus problem and I wasn't looking to being operated on any time soon before all this happened and now? ......

    My brother in law died of Motor Neurone disease so I'm well aware of how horrific that particular end of life is, so she has my sincerest sympathy as it's a truly horrible condition. I'll happily pop something in and unfortunately it's not the only good cause that I will readily support, it's just such a shame that in this country we seem to have so many health services that depend on charity to exist and which are propping up a system that isn't fit for purpose desite the amazing work that those in the NHS do.

    Life isn't currently at all easy for those who are fit and healthy, but for those who are suffering severe health problems, it's dire.... I'd like to think that there would be changes for the better after all this is sorted but in reality I've lived far too long to think that that is anything but a pipe dream ......... People need to realise that they are going to die too and that unless radical changes are made, when it happens to them, the lead up to their death is not going to be an easy thing to go through at all until the system is made much better than it currently is ....

  5. #5
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    Quote Originally Posted by Artistmike View Post
    I, despite being 'of an age' and supposedly 'shielded' am disabled myself and have been waiting for more surgery since October 1919 that is now unlikely to come this year, and I still go daily to look after a lady friend who has very severe MS and now virtually bed-ridden or I suspect that she'd be dead by now. As a result of both our situations I'm well aware of how even the basics of NHS services are now being denied to many people who absolutely depend on them and who will die prematurely as a result. Covid-19 has exacerbated an already crumbling NHS, my operation had been defered twice already before the virus problem and I wasn't looking to being operated on any time soon before all this happened and now? ......

    My brother in law died of Motor Neurone disease so I'm well aware of how horrific that particular end of life is, so she has my sincerest sympathy as it's a truly horrible condition. I'll happily pop something in and unfortunately it's not the only good cause that I will readily support, it's just such a shame that in this country we seem to have so many health services that depend on charity to exist and which are propping up a system that isn't fit for purpose desite the amazing work that those in the NHS do.

    Life isn't currently at all easy for those who are fit and healthy, but for those who are suffering severe health problems, it's dire.... I'd like to think that there would be changes for the better after all this is sorted but in reality I've lived far too long to think that that is anything but a pipe dream ......... People need to realise that they are going to die too and that unless radical changes are made, when it happens to them, the lead up to their death is not going to be an easy thing to go through at all until the system is made much better than it currently is ....
    I'm sorry for your loss & the difficulties you've been suffering. Thank you for your support & I hope things turn around for you.

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  6. #6
    I’ve popped a small donation in the pot.
    A close friend is 2 years into MND....it’s a truly horrible disease.

  7. #7
    Master Strnglwhank's Avatar
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    Quote Originally Posted by TikTokTrev View Post
    I’ve popped a small donation in the pot.
    A close friend is 2 years into MND....it’s a truly horrible disease.
    Thank you - that means a lot to me & my family

    Sent from my ONEPLUS A6013 using Tapatalk

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