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    New to M

    Hello everyone
    My name is Jill,
    I am 78 years old and have been diagnosed with mnd. Bulbar palsy
    my problem began just before last Christmas when I noticed my voice was weak. By the end of January discovered it wasn"t cancer. This had been my big fear.

    Eventually I had a fall at home and was taken to À and E. I don't know quite how it happened but within a few minutes I was talking on the phone to a consultant Neurologist. A little while later he came to A and E and gave me a thorough examination.
    I was admitted that day and next day had head scan and full body mri. Discharged couple of days later. Next out patient dep for testing my nerve reactions.
    Middle of July telephone appointment with neurologist and he talked us through his thoughts on my problem. My daughter was there because by that time my voice was very strained and he would not understand me.
    He mentioned a few names and that he was refering to the John Radcliffe hospital in Oxford I knew then what was the likely outcome . Mid August appointment with a proffesor at the JR. I was right in my thinking Bulbar palsy. Being right doesn't make it any better! Since my diagnosis I know I am getting worse my head gets so heavy and I know my neck and shoulder muscles are weak.
    Trying to look on the bright side of this life us hard. But someone said to me imagine if this had hrappened to you when you were 20,30,40, 50! Wedding, 2 children, divorce
    New relationship at 51 and living with him for 16 years until he died of a heart attack in my arms on New Years day 2010..

    I would have missed all of that the good, the bad and the ugly! So having this evil disease at my age isn't that bad we all have to die. Before diagnosis I would have reckoned 1 to 2 years possibly less as I have had type1 Diabetes for 40 years and Rheumatoid Arthritis for about 7 years.
    Now to face another battle.
    if you got to the end of this I respect your staying power, thank you

    #2
    Hi Jill welcome to a very nice yet awful place. On the bright side we now know the answer to a question we have all asked, when and how will I die? Makes the little things even more vital doesn't it! 😉😊x

    Comment


      #3
      Hi Jill and sorry you've had to join our Band of Brothers (& sisters)

      Ask your OT (occupational therapist) for a collar/neck support to help keep your head upright and stop your shoulders and neck from getting sore.

      MND is a tough one to get at any age but I'm glad you feel you've lived a full life. I had to smile when you said you hoped it wasn't cancer 😏 there are good odds these days that one's cancer can be cured, unlike MND.

      Take care and please don't fall, especially not with your RA...

      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
        Hi Jill

        Welcome to this splendidly supportive Forum.

        You will be very very well looked after at the JR. Profs Talbot and Turner and their colleagues are a marvellous team.

        I share your view about age of onset.

        Hugs
        Doug

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          #5
          Welcome jill from another one in her seventies who too feels I’ve had a life well lived but with a few glitches on the way.. the team at JR are fantastic so you are in good hands
          Last edited by miranda; 16 September 2020, 10:22.

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            #6
            Thank you all for your replies upbeat and cheerful. Ellie thanks for the advice abt my heavy head. Will do.
            I paint but since this illness has been on the cards Icarve lost the urge. I ws hoping that once diagnosed my art would come back it hasn't!
            instead I am spending my time putting my house in order My wardrobe for example about 25 items removed and sent to charity shops. 3 chest of drawers 2 bags of stuff removed!
            !Now for the living room

            Comment


              #7
              Hello and welcome Jill.

              You will find friendship and support from this group. We have a no falls rule here but occasionally someone breaks this. Let it not be you.

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

              Comment


                #8
                Jill, my local hospice does art therapy - although it didn't appeal to me, maybe your local hospice offers it?

                Actually, if you aren't already linked into a hospice, it's well worth doing. They are great places and offer support in many areas. Some accept self-referrals but most need a referral by your GP, Nurse or other health professional.

                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


                  #9
                  Hi Jill
                  I am 73 and this is my first day to really look at the forum and write on it, it seems I have been so busy with appointments and thinking about moving to a more accessible home. I also first noticed my voice affected about the same time as you, had the throat camera looking for cancer, then referred by SLT to neurology which was a bit of a wait because of COVID. Then straight away admitted to hospital for 4 days having all the tests at once, and diagnosis of ALS bulbar onset, with my hands now affected. Like you when I can be philosophical about it, I think something was bound to go wrong sooner or later (and I already have COPD). But this diagnosis is pretty daunting, especially as my voice gets worse. I don't know anyone with mnd, so it's great to meet you all. At the moment the OT and person from adaptation team think my house is pretty unadaptable to a wheelchair, but I can't help wondering if my choking will cause pneumonia etc before my legs completely give out, but all a mystery I suppose.
                  Diagnosed July 2020, ALS bulbar onset.

                  Comment


                    #10
                    Hey Heather, I'm almost exactly the same as you. I had a gene test done and got the happy news that I have a duff gene that my dear departed mother bequeathed me. Happy Days! 😀x

                    Comment


                      #11
                      Heather R If you were to opt for a feeding tube, that would take the stress out of eating, drinking and choking.

                      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


                        #12
                        I heartily agree a feeding tube is a gateway to happiness. Even when it breaks. 😀x

                        Comment


                          #13
                          Thanks for the advice, I had wondered about those. I suppose you then always have the option not to use them...... At what stage did you do your ADR what's it?
                          Diagnosed July 2020, ALS bulbar onset.

                          Comment


                            #14
                            Yes Heather, you can stop using a feeding tube at any time or you may wish not to get one at all, that's your choice entirely.

                            You can do an ADRT at any stage and you can change it at any time - it's not written in stone.

                            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


                              #15
                              Thanks Ellie x
                              Diagnosed July 2020, ALS bulbar onset.

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