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    #16
    Thanks all for the sound advice I'll follow it. πŸ‘
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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      #17
      I had heard nothing regarding my PIP claim so finally got through to their dept....after a long time hanging on the phone.
      I was told that my claim was being processed...and I would hear soon about a face to face assessment...which surprised me. I then said well I've added the DS1500 form too which I assumed would speed up the process. He went off for a while came back and apologised for the delay and would assign to a case worker....should know in 2 weeksπŸ™„

      It was a bit of a trail the whole conversation with my barely understandable voice and trying to make myself understood....anyway I live in hope πŸ˜‡
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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        #18
        🀞🀞
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        ​

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          #19
          Fingers crossed for you Linda🀞, Love Lynne x
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

          I'm staying positive and taking each day as it comes.

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            #20
            I think everything is in a mess due to covid. Pensions are well behind being sorted out. We still haven't got Stephens attendance allowance which means I can't get my carers allowance and looks of things my pension won't be on time either. 😐

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              #21
              Originally posted by denise View Post
              I think everything is in a mess due to covid. 😐
              I wish that was the case Denise. The truth is that some Finance Officer is getting a bonus for delaying our payments. I got my PIP, only for my Working Tax Credits disability element to disappear. 3 months on and my MP is even struggling. It is all calculated, believe me!

              Copyright Graham

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                #22
                I think I told you this but when my brother worked for the benefits office he was told never suggest a benefit, the applicant had to ask for it. Makes me mad. You? πŸ€”πŸ˜€πŸ˜πŸ˜xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #23
                  Well well well....just checked my bank online and saw an additional Β£2k+ guess who from....PIP...I assume this is the back payment. I've had no paperwork or phonecall...I'm not moaning just saying....weird system!
                  So MND family looks like I finally got itπŸ˜‰πŸ˜πŸ‘
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                    #24
                    LindaB Now you can get the duck house for the pond πŸ˜‰πŸ˜

                    I am quite sure that money will soon be gobbled up Linda - MND is a never ending expense account... xx
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    ​

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                      #25
                      Originally posted by Ellie View Post
                      LindaB Now you can get the duck house for the pond πŸ˜‰πŸ˜

                      I am quite sure that money will soon be gobbled up Linda - MND is a never ending expense account... xx
                      It will soon be used up you're right. Gives me some wriggle room though....get some additional support with domestic stuff. Also a duck houseπŸ˜‚πŸ˜˜
                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                        #26
                        LindaB
                        Hi that’s great news about PIP being awarded.I also opted for a car on motability scheme suitable for carrying me in a wheelchair when I need that.Think they are known as WAVS.

                        It’s good to be able to get some domestic help.I find that a real bonus now I can’t do my own housework.

                        Best wishes
                        Mary

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                          #27
                          Mary C thanks. I've seen a few posts mention WAVS but I know nothing about them?
                          It's surprising how even a little help with every day tasks can make a difference. Finding someone might not be straightforward though.
                          😘
                          Last edited by LindaB; 14 September 2021, 19:47.
                          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                            #28
                            Smashing about your PIP Linda, and the back payment is smashing, Lynne xx
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

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                              #29
                              Graham I intend writing to our MP. I think my husband's treatment is disgraceful.

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                                #30
                                Hi Denise ,can’t recall if you claimed attendance allowance for your husband under special rules ?Did you forward the claim with a DS1500?
                                If so the benefit is usually awarded quickly and as priority.
                                Not sure how long you have now waited ? But if you didn’t get a DS1500 from the GP, consultant or specialist nurse is it worth bringing this up at the meeting you have soon?
                                Good luck
                                Mary

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