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  • matthew55
    replied
    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

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  • fortuna
    started a topic New to M

    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
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