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Winter is coming - Advice for New Members.

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    Winter is coming - Advice for New Members.

    Winter is fast approaching and (unfortunately) there are quite a few new Forum members, so I thought I’d pass on some tips we’ve learned over the years and there is a Be Prepared theme running through this post 🙂
    • Flu vaccine: this annual vaccine is recommended for those of us with MND and for family carers and this year it’s even more important to get it.
    • Pneumonia vaccine (PPV23): this one-off vaccine is highly recommended too and protects against community acquired pneumonias. It can be given at the same time as the flu jab, in the other arm.
    • Energy provider priority: get on the priority list of your energy provider(s) In the event of power outages you will (or should!) get priority reconnection. Some providers may provide generators or, if your area is prone to storm damage, it’s handy to know where you can hire one locally.
    • Keep batteries charged: we know when storms or inclement weather events are due, so make sure any battery-operated equipment is fully charged in cause the power goes – hoists, wheelchair, NIV, food pump, communication devices/tablets/PCs/phones etc. If you totally rely on any piece of equipment, a back-up battery is a good idea.
    • Know your stock of meds: if a storm or snow is forecast, make sure you have enough meds to tide you over if there’s disruption.
    • Keep muscles warm: the cold can really affect us so now is the time to stock up on thermals, including socks, and general warm clothing (OK, not exactly Catwalk Fashion, but needs must 😁) If heavy duvets cause trouble turning in bed, consider an electric blanket (on a timer switch) beneath you and a sheet and lightweight warm fleece blanket over you. Hot water bottles and microwaveable wheat packs come in handy too.
    • Icy conditions: the ‘No Fall’ rule we have can be more difficult to obey when the footpaths are covered in lethal snow or ice, so please be careful and don’t take chances, poor balance is part of MND 😯

    Other, non-related things to be aware of are:
    • Council tax: you may be entitled to a band reduction now or in the future, check with your Council.
    • VAT exemption: mobility and other aids are exempt from VAT, although sometimes it’s cheaper to buy from that giant online store, VAT paid, than to buy VAT exempt from disability sites… And home adaptation works such as wet rooms and downstairs bedrooms should be VAT exempt (as Miranda always helpfully points out 👍)
    Please feel free to add to this list, it's not exhaustive by any means.

    Love Ellie.
    Last edited by Ellie; 7 September 2020, 14:53.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.


    #2
    Thanks for that Ellie. It gets very cold here too.

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      #3
      Thanks for these top tips Ellie, Its so important for us to plan ahead, especially with medication and flu jabs etc.

      I was still waiting for summer but I'll give that up now. X🌞😎😂

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        #4
        Thanks Ellie, very useful.

        Gary

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          #5
          Hi just to add - check your energy supplier for warm home discount, there are certain conditions and each energy supplier seem to have their own conditions, there are two groups, core group where you will get it and sub group and you might get It , it’s worth 140 off your bill, but you do have claim it
          it’s in addition to cold weather payment and winter fuel payment
          As long as there’s golf and beer I’m happy

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            #6
            Chillblains

            Just to reinforce part of Ellie’s timely and comprehensive advice about keeping warm, especially for those of us with lower limb onset.

            Do make a special effort to keep your feet warm. Lack of muscle tone in legs decreases circulation. Together with the cold this leaves us vulnerable to chilblains, despite thick socks. To my great surprise I suffered from this painful condition two winters ago. Not nice!

            Doug

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              #7
              I swear by microwave slippers, they came out of storage a couple of weeks ago! 😊

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                #8
                Thanks Ellie

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                  #9
                  Microwaveable slippers? Great idea! And Ellie thanks for such good advice!

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                    #10
                    I guess you have to take them off first

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                      #11
                      I do mine for 3 minutes but three pairs of socks is a must. Since starting I am on my third pair but to have warm feet nothing is too much! 😊x

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                        #12
                        Originally posted by matthew55 View Post
                        I swear by microwave slippers,
                        Whatever about warm slippers, I need microwaveable thigh-high boots, my legs get that icy cold!!

                        (Calm down Gentlemen - the boots in my imagination would look at home in an episode of Last of the Summer Wine, and not centre stage in a 50 Shades film 🤣🤣)



                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          This is the highest I found.😊x

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                            #14
                            There is also a microwavable body wrap 😊x

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                              #15
                              Originally posted by matthew55 View Post
                              There is also a microwavable body wrap 😊x
                              Single or Double sized? 😉

                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                              Comment

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