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Hullo from an old man but a new "carer"

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    Hullo from an old man but a new "carer"

    Actually it's my beautiful wife who has just been diagnosed, she is just turned 69 and I am just turned 80. We have had our first meeting with the neurologist and nursing team in London. Very helpful and supportive but still a mass of things to consider ( I'd never heard of voice banks or thought about feeding tubes) not least of which is the steady stream of sympathetic e mails from friends and family offering to help in any way they can. At present we can't think of anything they can do but that time will come I'm sure. Presently my wife can walk, eat and talk (particularly the latter !) just fine.She is no pain although she does get cramps. Her main problem is weakened arms and hands. So she can't reach coat hangers, shelves, unscrew bottle tops etc etc We are considering what supplements my wife should take. Until diagnosis we both took just Vit D and iron. Friends are urging my wife to take variously magnesium, Protandim, Riluzole, Nicotinamide and others. We are pausing before deciding what to take (if anything!), but definitely sticking to our regular beer o'clock drinks !! Also planning to visit my daughter in Australia at Xmas. That's all for the moment. Any useful thoughts very welcome.

    #2
    Roger Husband welcome to our forum. You sound very positive even though you have both received such a horrible diagnosis, which I think really helps. We all all here to support you in anyway we can so ask away and someone will have been there before.

    Love and hugs to both of you
    Xx
    when i can think of something profound i will update this.

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      #3
      Roger Husband A warm welcome to the forum, Roger, sorry you've had to join us.

      Honestly, you both sound as if you both have your heads well screwed on; your wife should do the voice banking, then you both can continue living life to the fullest.

      How long are you planning to spend in Australia?

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

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        #4
        Hi Roger, sorry you find yourself here 😔

        I hope we can all be of help and support to you.

        James
        Foxes Never Quit 💙

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          #5
          Roger Husband welcome to the forum. I am seventy five, I think older folk are in the majority of those suffering from MND? Going to see your daughter in Australia sounds a great idea whilst you can, all the best with all the arrangements. It’s a bewildering lot of information to absorb, but glad you have good support. Love from Heather x
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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            #6
            Roger Husband welcome to the forum, sorry for your wife's diagnosis. Voice banking is definitely something to look into as your wife has her speech. It was too late for my dad to bank his voice and I miss hearing it.

            My dad took riluzole from when he was first diagnosed, no way to tell if it has slowed progression for him but his physio did say earlier this year that his progression was slower than might have been expected. Things seem to have progressed somewhat since then sadly.

            There's a lot to take in during the early days but how lovely to have Christmas in Australia with your daughter to look forward to.

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              #7
              Roger Husband welcome to the forum. Sorry about your wife’s diagnosis. That made me laugh when you said your wife can walk, eat and talk, particularly the latter!😀.you sound like a breath of fresh air with a great positive attitude. All the best to you both and have a fab holiday in Australia.xx

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                #8
                Thanks everyone. Ellie, to answer your question, about a month we hope. I used to live there many years ago, so have many friends to visit as well as my daughter. Until COVID we made the journey every year. This may of course be our last visit but then again it may not. Que sera ! PS I’ve just read the very useful travel insurance posts on this forum.

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                  #9
                  Roger Husband welcome to the forum, it's a great source of information, support and humour.
                  Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.

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