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Thread: Coronavirus Information

  1. #51
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    Hi Lynne,

    Hope you are ok and your husband is behaving. My pneumonia has dried up and gone for now having had the double-barrelled antibiotics.

    My social worker took the time to try and undermine my DP last week. NOT a word on coronavirus and the impact it has on me. Fortunately I now have an excellent and loyal care team and so I am secure.

    Government are LYING about the actual number of deaths to coronavirus. The figure is much higher. And this follows the INCOMPETENCE of not including MND patients on the vulnerable list.

    Love
    Copyright Graham

  2. #52
    Forum Member Barry52's Avatar
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    Hi Graham,

    This is the update.

    IMPORTANT INFORMATION FOR MOTOR NEURONE PATIENTS AND CARERS:

    Today the Motor Neurone Disease Association has received the welcome news that the Government includes all people with Motor Neurone Disease under the Extremely Vulnerable Group to be shielded for 12 weeks. This effectively means that a person with MND and their family living with them should be shielded from the outside world as far as is possible. They should be supported so that neither they nor any member of their household should have to leave the house.

    The links below should provide the help you need:

    https://www.gov.uk/government/public...-from-covid-19

    https://www.gov.uk/coronavirus-extremely-vulnerable
    This allows you to register in the extremely vulnerable category - Motor Neurone Disease is included under Severe Respiratory Conditions. Go to this link, scroll down to the Start Now button and answer the questions.

    https://www.gloucestershire.gov.uk/g...nity-help-hub/
    If you need help with self-isolating eg. getting shopping, prescriptions, walking your dog etc, go to the "I need help" button and there is a form to fill in. There is also a telephone number 01452 583519. However it is probably preferable to use the online form.

    If you want help with any of these forms then call or email your own Association Visitor or Ruth Vidal Tel 07779019664 Email ruthvidalmnd@outlook.com
    Iím going to do this even if it kills me!

  3. #53
    Forum Member Lynne K's Avatar
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    Hi Graham, and thanks for asking. My husband and I have agreed to self isolate. The only time that he goes out is for an early morning stroll when nobody else has been about. He promised me that if there was anybody about he’d keep a minimum of 2 metres from them.

    I’m glad that your pneumonia looks like it’s gone. I certainly hope so. Smashing that you have a good team of care members. I hope that they’re always adequately gowned, masked and gloved for your protection.

    We are both virus free. Steve’s recovering from a bad back. This was a first for him. It made his mobility difficult. I loaned him a book that helped me years ago when I’d been in severe pain constantly for two years. I couldn’t sit at all during this period so I either leaned on the kitchen work top or lay down on the living room floor with my feet up on a chair often. Anyway The Back Book gently stretching and strengthening exercises sorted me out. Then when I was able I started to go walking taking longer and longer routes. It seems to be working for Steve.

    Tŗke care, Lynne x
    Last edited by Lynne K; 29th March 2020 at 19:02.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #54

    Death rates

    I do not, repeat NOT, wish to detract in any way from the terrible seriousness of the Covid19 pandemic, for people in general and for ourselves in particular.

    I find the blizzard of numbers we are bombarded with confusing at best and frightening at the extremes.
    So I’ve looked up some basic background data to help me see them in perspective. These are, in no particular order:

    The normal UK death rate runs at just over half a million a year, i.e. about 10,000 a week.

    More people die in winter than summer. The so-called winter excess mortality varies from year to year but was 23,200 in 2018/2019. Respiratory diseases were the largest cause.

    Respiratory diseases consistently rank among the most fatal diseases across developed countries.

    Deaths from influenza vary considerably from year to year, ranging from about 600 currently to 13,000 in 2008/9.

    As of 9am on 29 March 2020, a total of 127,737 people have been tested, of which 108,215 were confirmed negative and 19,522 were confirmed positive.

    As of 5pm on 28 March 2020, 1,228 patients in the UK who tested positive for coronavirus (COVID-19) have died.

    In 2018, 1784 people were killed and 25,511 seriously injured in road accidents.

    With no vaccine in sight for 6 – 12 months, we can only pray that everyone obeys the rules and stays at home whenever possible and that medical and care workers get the PPE they desperately need.

    Stay safe!

    Doug
    Last edited by Doug Carpenter; 30th March 2020 at 03:34.

  5. #55
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    Doug
    Nicely put, this is a scary time and my heart goes out to anyone affected by this but as I use to be a community carer, every year, flu would weaken and kill many elderly people, it was so sad, the only difference is that this Covid 19 strength will affect ANYONE, my only wish is when this virus is minimised will all flu patients regardless of age be given the care and help they need for them to survive and life instead of being left for days with minimal care to the point that their condition has made their survival impossible, thank you Doug for the facts, Iíll get off my soap box now lol

  6. #56
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    Hi Barry,

    There is no advice for people who have had it. My carers and I have all the highlighted symptoms and a young carer still has pneumonia I think. i have not been tested and this INCOMPETENT government hasn't even tested NHS staff.

    it is just business as usual Lynne. The only difference is that I am paying for taxis so that those of my carers that used public transport now do not. i have not been offered and my carers have not been offered PPE. The NHS barely have enough PPE from this INCOMPETENT government.

    i watched today's press conference. Front line staff of several hospitals didn't recognise the government mortality figures, Hayls and Doug. it matters not if you can rely on your carers. Spare a thought for elderly people who NEED carers that routinely visit MANY.

    Love
    Copyright Graham

  7. #57
    Forum Member nunhead_man's Avatar
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    Good morning all

    I think my immune system must've been developing his biceps because I had one felt like the beginnings of a stinking cold yesterday, sneezing away, and all I have left is a bit of runny nose.

    There seem to be loads of fakes out there and I came across this this morning poking around the inter-web....

    https://www.bbc.co.uk/news/52039642

    I think it is interesting that the Italians are distinguishing between dying of coronavirus and dying with coronavirus as there seems to be a very significant comorbidity of their elder deaths - apparently in sample of about 350 some had three other major conditions and only three of that sample had none.

    I was also interested hearing Prof David Spiegelhalter saying that the curve that showed projected deaths from un corrected curve of the development of Covid 19, and the deaths that result over perhaps two or three weeks, looks very much like the curve that you get throughout the year in the UK. So in other words most of the people that are dying from Covid 19 are those that would have died in 2019 anyway although he did emphasise the word "most".
    Last edited by nunhead_man; 31st March 2020 at 12:37.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  8. #58
    Forum Administrator Admin_MND's Avatar
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    Hi all,

    Just to update on the below, we wanted to make you aware that you can also register by calling 0800 028 8327.

    We will continue to share any updates as we receive them.



    Quote Originally Posted by Admin_MND View Post
    As a follow up to our post above, we have further information to share.

    People with MND are yet to be included on the Department of Health and Social Care list of those who are extremely vulnerable. However, we've had it confirmed that people with MND can self-register as extremely vulnerable.

    Visit http://gov.uk/coronavirus-extremely-vulnerable and follow the steps below.

    1. After confirming you live in England, indicate if youíve received a letter from the NHS and enter your details. Then tick "Yes I have one of the medical conditions on the list".

    It's been confirmed that, in this instance, MND is classed as a severe respiratory condition.

    2. If you live in Wales or Northern Ireland, please follow the advice provided by the Welsh Government and the Department of Health.
    We have local Branches and Groups available to support too, find your nearest here https://mndassociation.org/branches.

    3. You can still help MND Campaigns lobby Matt Hancock to specifically include motor neurone disease on the Governmentís extremely vulnerable list.

    Please join us and take action here > http://bit.ly/MNDCovid-19.

    Thank you for your support.

  9. #59
    Forum Member Barry52's Avatar
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    I emailed my MP today via the MNDA link on Facebook. He happens to be the Secretary of State for Housing, Communities and Local Government.

    I registered last Tuesday and as yet I still can’t get a delivery slot for groceries as the supermarket doesn’t recognise me as a vulnerable person. Either the wheels are turning slowly or there is a disconnect between the different organisations.

    Barry
    Iím going to do this even if it kills me!

  10. #60
    Forum Member Lynne K's Avatar
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    Barry, about your shopping: Steve received his Tesco order Friday evening. He’d ordered that approx two and a half to three weeks earlier. He hasn’t yet been able to get another slot. I ordered from Asda in the same week that Steve did his Tesco one, since he couldn’t find a slot for this week. My order is coming Saturday 11th 8-9pm. I’m putting a few things in for my daughter who hasn’t had success with getting slots for a couple of weeks. She’s trying to self isolate her and her three kids as the eldest, Safia 7yrs old has asthma. Whenever she picks up a virus, even the common cold she ends up in hospital with breathing difficulties and pneumonia. Getting the little one to keep on an oxygen mask is sometimes challenging. Anyway with her cupboards and fridge depleted she decided to go to Asda. The kids where with their dad (they live apart). Social distancing was followed in the queue and numbers in the shop where limited. She picked up some things for us and left them on our step.

    As we both couldn’t get a slot I registered for Morrisons. I did the shopping but cannot get a slot there either for next weekend after 11th so my basket is just sitting there.

    A bit of amazingly good news: a neighbour on the next block dropped a letter to us. She explained that she works in Asda on Wednesday, Friday and Saturday and will get us some shopping and leave it on our doorstep. How nice is that . There are very generous people around. We now don’t need to worry.

    Lynne
    Last edited by Lynne K; 31st March 2020 at 12:00.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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