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Husband diagnosed on 16th January

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    Hi Ellie,

    Thank you so much for your reply. I see that the dates are all in April about the Riluzole and our MND nurse has said it is not available after May....

    When she phoned to say that it was not available, hubby saw this as a signal not to take it! If he starts it and the supply is interrupted again, where will this leave him? What affect might this have? Also, I am thinking it may be all too late for him to start now :-( He has started to go downhill again with me hardly able to understand what he is saying to me over the last few days, whereas last Thursday when the SLT visited he was speaking quite adequately. Have started to worry, but am trying to make every day a happy one for him.

    My biggest upset is that he has become (after 35 years of being with him) a lovely person and so want to hang on to how he is now as he has been quite a grumpy person throughout our relationship, even that has been quite a surprise and welcome. It is very difficult to take at the moment how fast the downhill trend is when it starts.

    I am looking forward to the hospice visit for both hubby and myself :-)

    Thank you again,

    Never take tomorrow for granted!


      Hi Wailywoo,

      It is sad that your husband is deteriorating quickly. The rapidity brings its own difficulties. One of the things my partner and I have noticed is that by the time we have found a reasonable way of coping with the latest deterioration, I have deteriorated further and the way we had found is no longer enough. It can be so frustrating and disheartening.

      It's difficult to believe that there can be any positives with MND, but you have obviously noticed one in your husband's change in character. I hope you are able to really enjoy that aspect of him.

      Take good care of yourself, Wailywoo, and I hope you both gain a lot from your hospice visit.

      Trying to keep positive, but not always managing.


        Hi Wailywoo, I’m very new here. I just wanted to say that I have noticed the same thing about my husband. We have never had major rows, but like most of us, at times he has been a bit niggly. But at the moment, he is not at all grumpy, despite everything that is happening to him.


          Hi Wailwoo,

          Hubby's change from grumpy man to sweetness & light just cracks me up Usually it's the other way around... Maybe he's atoning for 35yrs of grumpy maleness.

          He is legally entitled to get Riluzole, so if the generics are not available, the branded Rilutek or the liquid form, Tiglutik, must be provided. They'll complain about the cost, but let them - he is entitled to it.

          If he continues having difficulty sourcing Riluzole, please ring the MND Connect Helpline.

          I am sorry his speech has declined significantly - factors such as fatigue, stress, not getting enough calories, breathing etc. can affect 'performance' and progression. He may have a period of relative stability next.

          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,

            I am loving that you are finding it funny that my hubby is contrary to some others, and it seems I have company with Polly there too. Don’t get me wrong, he does get a little frustrated when he can’t do things for himself, but even that is getting a lot less now and he did initially shout at me when I didn’t do things in exactly the same way as he does them (putting the sugar in the cup first and then the tea bag hahaha), but all is down to acceptance now, I think. He is being very brave about it all and we have very emotional days - ups and downs....but generally he has become a lot more tolerant and looking for happy moments rather than the moaning negativity that was him before. More of a positive outlook now. It is very nice....

            I think tiredness etc may have a little to do with hubbys speech, but it doesn’t seem to be improving much at all with rest. I think it has been as a result of another decline and maybe as you say, he may level out again. The levels give hope and then the declines dash it again! It also seems that any exercise is quite bad and exhausts him leaving him in a worse state. Most things exhaust him now. Even showering (sitting on a bench across the bath) and dressing. Sometimes it takes until lunchtime to get ready for anything.

            Thank you so much for your input, it made me smile. We will be seeing the MND nurse on Friday morning, so will see where we are with the Riluzole then.

            Wailywoo x
            Never take tomorrow for granted!