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    #76
    Ellie thanks xx

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      #77
      Hi

      I must say that our experience is different to a lot on here, maybe because my hubbies initial reaction to his diagnosis was that he wanted to end it all and jump on a plane to Dignitas. Anyway, our first contact with the hospice was very early on after diagnosis and Dean gained great comfort from knowing that when the time comes that he has had enough there are legal ways in this country to say enough is enough and go peacefully. So we started the end of life discussions very early on.

      We sorted out LPA's and ADRT to provide emotional comfort to him and the DS1500 was provided at that time.

      Anyhow, once they were sorted we could get on with living well, which incidentally is the name of the hospice service.

      They said that they are surprised that more people don't cover this off sooner rather than later.

      The DS1500 speeded up the blue badge and benefits which we had no clue about as have never claimed benefits. Got PIP at higher level and ESA.

      Our support services have (to date) been amazing and explained that provision of NIV machines are a NICE recommendation so they have sat here for months unused, but his SATS dropped last week so he is starting to use it. plus he is having a PEG fitted in a couple of weeks - he was referred some time ago before he needed it, but swallowing problems are starting to occur with liquids so actually quite timely.

      Because we were in the system early on, I know who to contact whenever a new symptom occurs. As soon as swallowing liquid was a problem I called the neuro rehab team who sent out the speech and language therapist who has provided thickeners so now that symptom is under control.

      Initially we were overwhelmed by everything and in total shock and were told what might happen and who to call if it did. It was scary at the time, but I do feel much better prepared now that the reality is happening.

      Don't get me wrong its difficult but those darkest days at the beginning dud kind of prepare us.

      The hospice has explained that we are fortunate that we live where we do as the service is well funded. So there is a bit of a postcode lottery too.

      So far though for us we are being supported.

      I unfortunately broke my leg and found that this really impacted on being able to physically care for Dean, a casual email to the OT meant all sorts of additional support and equipment being put in place to help within a few days. I just hope we remain feeling this well supported.
      Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

      Respiratory and blood gases still within normal range.

      No speech but sense of humour still fully intact.

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        #78
        Thanks for your good news post MMG

        Lovely to hear that Dean is so well linked into various services. 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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          #79
          I considered ending everything at diagnosis but then I thought it would be a good thing to live part of my life on the other side.As a cripple in a land of walking people. Appreciate both sides of an argument as it were. 😁🤗😘😍xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #80
            Sick to death of fighting for anything and everything, diagnosed March this year. slurred speach started March 2020 so 18 months since symptoms started , still no benefits no pip decision sent all paperwork at least 8 weeks ago ,,and it’s bulbar onset supposedly quicker progression!! So after asking my mp to get involved I get this letter from my heartless neurologist remember I have 4 children 3 under ten I’m sick of it
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              #81
              Hi , this is awful for you.Are there any other health professionals involved who could issue a DS1500( community palliative care nurse or a hospice nurse or GP.)
              There seems to be several hospices in the Bristol area…if you haven’t been referred it might be worth ringing nearest hospice and seeing if you can self refer and explain with a young family you are are in need of support ?

              Can MND Association take this on with/ for you in terms of chasing up PIP and any other benefit entitlement .Might be worth ringing and asking.The MND association also has volunteers..could a volunteer help with these issues.

              Don’t give up.You need a good team around you and hopefully SALT team are already involved.

              Best wishes
              Mary


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                #82
                Mary C yes had a call from St. Peter’s today so we see what that brings ,, it’s just let down after let down, I got mortgage 3 young boys who won’t stop eating, so stressful and to cope with mnd aswell I wish I was taken away soon

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                  #83
                  Absolutely outrageous, heartless and shameful for her to point blankly refuse you the DS1500 and to ignore the 'Scrap 6 months' campaign outcome.

                  Now we know what the FA initials stand for, the A being Awful.

                  Contact MND Connect if the hospice can't help you Patrick, she cannot wield such power over you. 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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                    #84
                    Originally posted by Patw View Post
                    Sick to death of fighting for anything and everything, diagnosed March this year. slurred speach started March 2020 so 18 months since symptoms started , still no benefits no pip decision sent all paperwork at least 8 weeks ago ,,and it’s bulbar onset supposedly quicker progression!! So after asking my mp to get involved I get this letter from my heartless neurologist remember I have 4 children 3 under ten I’m sick of it
                    My GP completed my DS1500 so try that route?

                    Sorry you've had such a poor experience with this person who should really know better😠

                    I agree with other posts MNDA will help if you contact.

                    Good luck and don't give up👍🏻
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                      #85
                      Ellie shocking isn’t it !thanks again

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                        #86
                        LindaB tried my gp there just as bad, the gp said we only give out to cancer patients or people with neurological conditions my partner stated I had bulbar mnd , she said ok I will have to ask your neurologist !! Even my gp hasn’t got a clue about mnd !! Had enough now am at breaking point!!
                        really feel like robbing a bank

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                          #87
                          Patw as others have said try your local hospice team...sorry you're being given such a hard time....last thing you need is more stress
                          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                            #88
                            LindaB thanks and I think that’s the last resort

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                              #89
                              Patw the good news is PIP will be back dated from when you applied....

                              I've found my local hospice community team a great source of support...social worker...OT....SALT...Specialist nurse.....really great! Keep us posted 👍🏻
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                                #90
                                LindaB thanks and I will 👍

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