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Wife diagnosed 06/05/2021

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    Wife diagnosed 06/05/2021

    struggling to come to terms at the moment,
    aint sure what’s round the corner,
    m.n.d has been great but still feel am lost.
    wifes got early symptoms at moment.
    with struggling talking and sliva problems.
    kids all grown up so night times feels am
    left on my own sometimes,
    sorry for the whinge but ain’t sure where to turn

    #2
    Wife makes me laugh she’s so strong and always on form. Things ain’t so hard when I see her smile

    Comment


      #3
      Ricky135 A warm welcome to the forum Ricky, awfully sorry about your wife's diagnoses.

      No need to apologise for having a whinge and you've taken the right turn in joining the forum. We are here to listen and to help you both and, believe it or not, we have a right old laugh too!!

      Have you anyone you can talk to or any mates with whom you could pass an evening? MND is a very selfish illness but try to remember your life and wellbeing are important too. Do you think you would talk to a counsellor to sort out your feelings and fears?

      I hope your wife is in touch with a speech and language therapist (SLT)

      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.

      Comment


        #4
        Thanks Ellie yeah MND Association have put everything in place. And have been brilliant. Hardest part was sorting universal credit and benefits am still working so at the moment that’s my breathing place . Wife’s not too bad at the moment just seeing slight things in her which has changed

        Comment


          #5
          Hi Ricky.
          So sorry to hear your wife has MND.It’s only been 2 months since diagnosis so no doubt you are both in shock.I do hope you are getting some support and the chance to share your feelings as emotionally you must feel in a turmoil.
          likewise I hope your wife is now getting some support.So many things to sort no doubt.
          Hope you feel you can ask any questions on here.Many members have had similar experiences and are very supportive.
          Best wishes to you both
          Mary

          Comment


            #6
            The sooner you enrol in the correct gene-therapy trial, IF APPROPRIATE, the more of the person you save.

            Try a little giggle, it won't kill yer...

            https://www.youtube.com/watch?v=kx_G2a2hL6U
            Copyright Graham

            Comment


              #7
              Welcome to forums Ricky. This is a good place for tips, friendship and support. I’m sorry that your wife has received the dreaded diagnosis of MND.

              I agree with Ellie that it’d be good to get the SLT to see your wife. They can advise on voice banking which is best done sooner rather than later.

              Lynne
              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.

              Comment


                #8
                Welcome to the forum

                It is a great place for getting your feelings out and emotional support.

                Others have covered, swallow and voice.

                For you as a carer

                Please contact your local carer groups and through my GP when I alerted them that I was a carer
                I have a Wellness coach that checks in every week by phone, so I can have a bit of conversation with someone that knows the situation
                It makes a difference
                I got linked up to a local walking group for health, just once a week a few laps of the football pitch.

                Also the MND nurse refered us to the Local Hospice, for Hospice at home 3 hours a week so I can get out to do a bigger shop and have a breather.
                Hospice is not just for end of life but for people with life shortening illness (this service is not offered everywhere) but do check what services your hospice has.
                My gran with cancer was supported as an outpatient for 8 years, with her hospice.

                It also lets Thomas my husband chat to different people and get used to accepting some assistance in a gentle way.
                Although he uses some voice control equipment.

                Having had troubles in the past and feeling that I had no one to talk to
                The Samaritians were excellent for having a vent at 2am (UK number 116 123)
                There is also breathing space and obviously the MND Association.

                Donna


                Husband Diagnosed in July 2020 with MND
                Arm onset

                Comment


                  #9
                  Thanks guys I really do appreciate it I know we all have our own battles with this horrible disease and as it’s so new to me am doing my research and luckily have a mini break while at work. But the future with my wife is going to be H.A.P.P.Y am going to make sure. M.N.D association has mentioned a social worker for us but still waiting

                  Comment


                    #10
                    MND is no match for true love...

                    https://www.youtube.com/watch?v=ZbZSe6N_BXs
                    Copyright Graham

                    Comment

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