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Gone far too quickly

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    Gone far too quickly

    Hello everyone
    I’m sorry I haven’t posted very much. I started with good intentions but events took over rather more swiftly than we could have imagined.
    My beloved OH had the first symptoms at the beginning of June last year. By the end of June our GP was issuing dark warnings of ‘diseases with nasty names’. OH had specifically asked her to be open and honest about her thoughts. There were no appointments available in our area with a neurologist so we had to seek elsewhere. Nothing was available until October. Our GP gently suggested we go private ‘just to get a diagnosis’. 10 days later, on 27th July we had a diagnosis of ALS. The consultant said that his symptoms could indicate nothing else. By the end of August he was wheelchair bound. September lost him his left arm. In October he finally got the nhs appointment where the consultant told him ‘it probably isn’t MND’. Then we went to Oxford (as he took part in research there) and saw Prof. Kevin Talbot, who confirmed it definitely was ‘a very aggressive MND’.
    OH lost his battle with MND yesterday. He passed away in our local hospice, just 7 months after his first symptom. This afternoon his brain was harvested and sent to Oxford for research. We had been married for 39 years. Together since we were age 18 and 20. Life will never be the same again. Hopefully the research he has been , and is, involved in goes in some small way to finding a cure or treatment for this vile disease .
    My love and prayers to you all. All who have the disease, and all who care for someone with it. You are all heroes! God bless xx

    #2
    Dear Namay,

    I am very sorry to hear that your beloved husband has passed away. Please accept my deepest condolences.

    Your husband was an extremely brave gentleman. He is a hero for taking part in medical research, for the benefit of others. I expect you and your loved ones will always be proud of him for being so courageous.

    It sounds like you were an extremely loving and devoted couple. I can't imagine the pain of your loss, but I hope you find comfort from the precious memories of many happy times you shared together.

    From reading your posts, I can tell that you are a wonderfully kind, caring and thoughtful lady. I have a tremendous admiration and respect for you and the other carers I have read about on this forum - you all have hearts of gold! I hope that you have the company and support of loved ones and friends at this sad time.

    You are in my thoughts and prayers. God bless you and your loved ones.

    Rest In Peace, Dave.

    Love
    Kayleigh x
    Last edited by Kayleigh; 1 February 2019, 00:23.

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      #3
      Hello Namay,

      I’m so sorry to hear about the loss of your beloved Dave. It was such a short time after diagnosis that you both probably hadn’t come to terms with the nature of this beast. Please accept my condolences.

      I hope in time you can look back at happy times in your lives.

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

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        #4
        I am so very sorry to heear of the loss of your lovely Husband Dave, God Bless, you are in my thoughts and prayers. xxx

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          #5
          Hello Namay,

          So very sorry to hear of the loss of your beloved husband, Dave. You sound like a wonderful,brave couple.

          I really hope you have love and support around you in the coming months.
          You are in my thoughts.

          Love Debbie x

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            #6
            Oh Namay, I am so sorry for the loss of your beloved soulmate - you are right, he did go too quickly.

            I wish you love and support for the hard times ahead. I am quite sure your heart has a store of the love he bestowed on you and your head is full of wonderful memories of him and I hope you can draw some small comfort from these.

            Heartfelt condolences,

            Love Ellie.
            ​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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              #7
              So sorry to hear of your loss Namay. My thoughts are with you and your family. If you are up to it, I would write to the neurologist who said that your husbands symptoms were not ALS to tell your story. Hopefully they will learn by it so treat subsequent patients with more incite and compassion. Take care, Lynne x
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
              I'm staying positive and taking each day as it comes.

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                #8
                Hope you’re better soon. Keep warm and cosy xx

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                  #9
                  sorry posted this for Lynn on wrong thread, its always a bit faffy on ky phone!

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                    #10
                    Thanks Shrew x
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                    I'm staying positive and taking each day as it comes.

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                      #11
                      Thanks everyone. We had many good years before this so were very blessed.

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                        #12
                        thinking of you and your family xx

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                          #13
                          So sorry to hear this. I'm wishing you strength through this difficult time.

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                            #14
                            Our deepest sympathy and condolences for your loss Namay, our thoughts are with you and your family at this time. Tim and Mary

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                              #15
                              I am really sorry to hear this sad news and my thoughts are with you

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