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    New diagnosis

    Hi. Our wonderful, vibrant, funny father has just been diagnosed. Our world has collapsed.
    Symptoms have all come so quickly. He’s lost 3 stone in 6 months thru wasting and breathing difficult.
    Not had great experience with consultant, just blunt diagnosis and discharged with NIV and no other information. This site has been a vital source of info.
    We are seeing such drastic changes in the man who is our hero. Personality’s already affected. We fear we’ve already lost the dad we adore, part of us fear he is withdrawing to protect himself after the shock. All his family want to rally and help him and his wonderful wife, who is struggling emotionally and exhausted, so are visiting as often as we can. Just feel helpless.

    He's still in there. Always will be. Stay Strong 😍😘👍😁xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      Good morning LouLou,
      So sorry to hear of dad’s diagnosis.Many people after diagnosis get referred to the local hospice or to community palliative care team.
      This then provides the gateway for referrals to occupational therapists, physios, dieticians etc.
      I Suggest you or your father ring the GP and ask if this referral has happened already.
      Also as your dad is withdrawing there should be counselling/ psychology support as part of palliative care team.Again the GP should know this but certainly the palliative care will know.
      To be discharged (? From hospital)with a NIV must be so scary for your dad and his wife plus yourself).I use a NIV and it has taken me weeks t get used it .

      My suggestion would be to get cracking today to contact GP, find out where the local palliative team is based and ring them and voice your concerns as a matter of urgency.
      Once you get the right palliative care team the help and support should commence very quickly foe your dad, his wife and family.
      MND Association have a help line and lots of fact sheets and literature on many aspects of MND including NIV.
      The priority at the moment is to get support to your dad ASAP as he must be shellshocked at the moment.
      Also it’s so important that dads wife and you family know there is help, advise and support available for you all.

      I would suggest you start ringing the GP ASAP..record the name and phone numbers as you discover when and where help will come from.
      You could ring the local hospice too for advise but usually a referral to a hospice needs to come from health professionals.Please note not to alarmed at hospice input as the palliative care team can be linked with the hospice.
      My experience when diagnosed a year ago was when I got diagnosed within a week the nurse from palliative team contacted me and visited and helped diffuse my anxiety.

      People on this forum and their carers, spouses etc who have been or are on the MND journey will offer support and information but at present you don't need to be overwhelmed.

      Do come back on here and let us know if you /dad managed to get an“ into the system”.
      Best wishes


        Sorry about your father’s diagnosis Loulou, but welcome here where you can get support, have questions answered (mostly) and a place to offload. 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.


          Hello and welcome Loulou.

          Everyone on this forum understands what your family is going through and we are here to support you. I find it disturbing to hear that your dad’s consultant just sent him on his way without arranging the support team. There are 22 MND specialist centres in England who provide an excellent service and dependent on the location of your parents it may be worth registering with one. MNDA connect can offer advice.

          Best wishes,
          I’m going to do this even if it kills me!


            Hello Loulou,
            What Mary says here is good advice and I agree with Barry its disturbing no further advice was given at the time, but if you cant get any further do what I did and "Self Refer" I was sick of no one knowing about my husband other than being on the merry-go-round of testing and no definite diagnosis so in desperation I googled it.........completed an on-line form and that did the trick,

            Never have so many different people visited the house (pre pandemic though) OT, adaptations, Physio, Welfare, Carers Assn cant remember them all.

            At least we were on a list somewhere at that point!

            Husband Albert diagnosed PMA Feb 21


              Hi Loulou

              nice to meet you. I hope you can find answers and friendship here. We are all here to support you and your family as best we can.

              love and hugs Denise xxx
              when i can think of something profound i will update this.


                Loulou A warm welcome to the forum Lou, albeit one you wish you had never had cause to join.

                Your dad's diagnosis is tough, that's for sure, but it doesn't have to define him, nor his family.

                I definitely agree that palliative care and hospice involvement is a good idea - please *do not* think these services are for end of life care only, but are for those of us with life-limiting conditions too, and are hugely beneficial resources to have on board.

                Love Ellie.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


                  Hello Loulou. I hope your dad finds a way back to you. We understand his journey x


                    Welcome Loulou My mum was diagnosed in 1976: never expected to be here on my own account 40 odd years later! But such is life. First time in my life that i've reported soemthing unusual to a GP, and any kind of diagnosis has been given - i guess that is a good thing????????

                    But maybe, always being told -' we can't find anything' was better?

                    I can only trust that your father will come back to himself and give you great memories. It is not easy to deal with a parent in this state, I know.
                    Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.


                      Thank you so much to all who took the time to read and reply to my first message. *Update*
                      GP now fully aware of diagnosis and is working to get all necessary health care professionals involved. For first time dad’s wife feels they are listening and making a concerted effort to put things in place for him.
                      EMG tomorrow, bad days and some better ones this week, but as people kindly pointed out. He’s still here, still battling, still Dad. Thanks again 💕