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    Hi Everyone First Post

    Hello My name is Dee,

    My husband was diagnosed in July 2020, we knew something was up for over a year. I thought Parkinsons or MS. Long time carer for both parents with dementia, so have some experience of caring, social work and campaigning for better care. Ex nurse. Just waiting for the MND nurse appointment and the next appointment with the Neurology consultant regarding the only medication available. I always told my husband he was special but only one in 5 thousand with MND, that's super rare.

    In my journey as a carer re parents, I knew the value of good information and support. Very impressed with the information booklets. We have told both sets of parents and we don't have children. We hope with humour and a positive outlook, to face this new challenge. The main one is to move as the private rented 2 up/ 2 down is not suitable. Also PIP etc. Husband knows I am a member here and I am the information finder as he can no longer type or write.

    Hope everyone is have a lovely Sunday

    Hello Dee and welcome to the forum.

    I’m sorry to hear about your husband and indeed he is part of a very special group. Your experience with care and your profession will be of value to many of our group as this forum allows us to share knowledge and navigate a complicated system of benefits and care packages. I assume you have an MND care team in place.

    Good luck with the move and I hope you find suitable accommodation.

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


      Hi Dee, I’m sorry about your husband’s diagnosis. He’s got a fabulous wife by the sound of it. Good luck with getting PIP at the high rate. Hopefully the MND Specialist Nurse that comes out will do the forms for him as that’ll be the best chance.

      You have been through the mill already caring for both parents. It sounds like that’s still going on. How are you coping with a third burden?

      Take care, Lynne x
      Lynne K
      Forum Member
      Last edited by Lynne K; 2 August 2020, 10:45. Reason: My keyboard messed up again
      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.


        Hi Lynne and everyone,

        Yes mum and dad are still living independently with dementia. Diagnosed 14 and 12 years ago respectively, both living well beyond the life expectancy, for dementia at the time. Basically this was my biggest fear that husband would get ill at the same age as mum, at 56. It feels like the other shoe has dropped, finally. I feel like a veteran going into battle for the third time so the shock and denial etc was I think/hope short lived. My practical concern is I live 200 miles away from parents, haven't seen them since march, plus the stairs in our place. I have been through PIP with mum and dad, used to help people with discharge from hospital etc.

        I am hoping the MND nurse can help with PIP and housing benefit etc or signpost to people who can. Also emotional support for husband and I, I know that that is important.

        We are traveling hopefully, prepare for the worse (getting affairs in order etc) and hoping for the best, short holidays in UK plus will get married at some point. We were handfasted 15 years ago and never got around to making it really legal.

        As for the burden, after 13 years I finally got proper outside help for mum and dad, it was a long battle and we won. So hoping that with help it will not be so long with husband. I will also be acknowledged as an official carer. I also campaigned with my mum, which helped feel that you were helping others.

        Also meditation, yoga and mindfulness plus lots and lots of cake/chocolate. Friends have been amazing and everyone is shocked and pissed off at life on my behalf. Early days but husband's humour is helping, I think we have laughed more since the diagnoses than the year of wondering.


          I have a form of MND that means every day is precious. But I am trying to live 'normally' for as long as I'm able. One day at a time. ) x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


            Hi Dee.

            A warm welcome to you and your husband - sorry you've had to join us.

            You've had a rough time with your parents and now this...

            You've been given lots of good advice above and sounds as if you've your head screwed on too, which is good!

            Originally posted by DeeH View Post
            ...he can no longer type or write.
            If your husband wants to use a PC/tablet, there are alternate ways to type, so that's something else to put on the list (I use my eyes to control my PC)

            Big hug to you both.

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


              Hi Dee,

              I am so sorry for your husband's diagnosis. I just wanted to say a warm welcome to the forum from me. It is a great place for friendship, advice and support.

              it sounds like you both have a positive attitude which will really help although some bad days are to be expected so be kind to yourself.

              Hopefully your MND nurse will be able to sort out your higher rate of PIP, like mine did. I also spoke to a benefits advisor from the MNDA after I was diagnosed and unable to continue work and the advice was valuable.

              Take Care and a big hug from me too !
              Love Debbie x


                I am so sorry to learn of your latest upset. Although I have MND it is the Progressive Bulbar Palsy version. So far I have lost my speech but I am still able to swallow and eat normally though it takes me twice as long. I have a very loving and understanding wife of almost 20 years. You are going to need lots of help. We will be praying for you, please keep being positive. Best wishes to you and your man. Regards John


                  Thanks everyone, for the kind welcome. The OT and Community physio are coming this week, so hope for helpful advice.




                    Donna, I find it useful to have a written list of questions so I don't forget anything 😏

                    Remember, the role of the OT is to make Thomas's daily life as safe, easy and as independent as possible - so maybe take this time to see where the issues are.

                    Safe for the Physio - note any pain or soreness causing problems and discuss it on Thursday.

                    Good luck.

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


                      Hi Ellie

                      The OT and Physio seemed nice and professional. Looks like we are getting a few portable adaptions. All agreed that the place is unsuitable and we told them of our plans to move. Waiting until we see the MND nurse and outcome of benefit/PIP etc. Only thing was OT mentioned length of time of illness of 3 years ? to end which I knew was dodgy. Told them of our plan to travel hopefully, we are not oblivious to the trajectory of the condition but a little positively is required. We told them that the consultant was very blunt about the news. All in all a good day, the swivel chair looks great for over the bath, if we can get one.

                      Kindest regards



                        Hi Donna

                        I’m so sorry that you and your husband have had to embark on this journey.

                        Predicting the duration of MND is notoriously difficult. It depends on so many individual circumstances. Professionals tend to quote 3 years in the early stages – it’s simply an average figure derived from a large dataset. But they will often revise their estimate later in the light of further patient-specific information.

                        Each person is different and a more useful indicator is that MND tends to progress at the same rate at which it starts. Again, there can be exceptions.

                        It’s probably better to concentrate, as you are doing, on making Thomas’s environment as comfortable as possible.

                        All the best



                          Yes, that "3-5yrs" life expectancy is what all the literature says and maybe the OT is inexperienced with MND, but you're spot on, it is dodgy indeed to mention any prognosis at all, particularly at Thomas's very early stage.

                          Nobody can predict anyone's expiration date and it's no different in MND.

                          I'm sorry the world has shrunk considerably for overseas travel for you both, that's really unfortunate timing, but hope you can organise something.

                          Take care.

                          Love Ellie.

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


                            Hi Ellie

                            Ha ha,

                            just reread what I wrote "travel hopefully". Maybe that is what they thought we meant actual physical travel, were as, we were thinking more emotionally. Like keeping positive and not getting into the doldrums too much.

                            It is what mum and I talk about in her dementia journey, kind of short hand for, prepare for the worst and hope for the best. Glad that the 3 years is a standard thing until more information is known.

                            We have been lucky to have had some good experiences overseas but we have no plans except explore the UK, closer to home, COVID and other things allowing.

                            Thanks everyone for the replies.

                            Hope to see the MND nurse soon and the OT is coming back with equipment next week.

                            Thomas' electric shaver arrived so hoping the results are as good as the hair clippers.

                            have a lovely FRIDAY




                              I just love the intricacies of the English language 😁
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.