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    Hello everyone

    My husband’s diagnosis was in January 2022, having been warned of the likelihood in mid December. This came after several months of various hospital appointments in the orthopaedic department and then eventually the neurology department. To say it was a shock is an understatement, MND wasn’t on our radar at all but we are coming to terms with it as best we can.

    He’s already done voice banking using the “I will always be me” method. It was very straightforward and the funding from MNDA was authorised the same day (thank you!). It was very emotional though, listening to the people reading the story and hearing him read it.

    In the meantime that old chestnut “one day at a time” is the mantra we’re trying to embrace. It feels a bit like the calm before the storm at the moment but this forum will, I’m sure, prove to be invaluable as time goes on.

    Thank you for reading
    L x

    #2
    Hi lyn
    you are right this is a lovely place for help and support at a really stressful time. Its difficult to come to terms with the diagnosis its like a dreadful nightmare.
    One day at a time is definitely the right approach.

    I'm having counselling to help cope with my husband's diagnosis of mnd and ftd. I didn't think it would help but I feel better for it. Just talking about it has helped get it all out I supposesupported glad you have found us. As you can see we discuss everything.

    Love to you both
    Denise xxx
    when i can think of something profound i will update this.

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      #3
      Hi and a warm welcome. Its a great place for tips, aids and just to rant of cry.
      Xx
      Diagnosed May 2021 bulbar onset als.

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        #4
        Welcome along. Sorry to meet you but very happy you're here 😊😁😉🤗xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          Lyn-E welcome to the forum....look forward to reading your posts👍🏻😘
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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            #6
            Hi Lyn and welcome 🙏 x
            Foxes Never Quit 💙

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              #7
              Lyn-E Welcome and well done for doing the voice banking already. Love, 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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                #8
                Lyn-E Nice to meet you Lyn and a warm welcome to you both - we're here to help, to listen, to support, to share and the rest.

                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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                  #9
                  Lyn-E welcome to the forum.I’m a carer for my husband who was diagnosed in 2017. He’s still walking and talking albeit a little slower. It is rather daunting when first diagnosed but you learn to adapt and appreciate other things. Take care of your selves. Xx

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                    #10
                    Lyn-E you will indeed find a wealth of care and support here and hopefully your husband will too. The first few months can be tough, getting used to diagnosis and can be overwhelming, but just go at a pace that suits you. Some people need a lot of time to 'plan', others prefer to organise as many things as they can immediately, such as the voice-banking.
                    This illness is very variable, and equally there is no one way to do things. I have found that, if you feel you are in control of things, whilst acknowledging you will need to adapt to change, you don't feel your life is over, just different. I was devastated by the diagnosis, but 10 years on, live well with what I can still do and try not to dwell on what I can't (still have the odd rant of course!) X

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                      #11
                      Thank you for the friendly welcome from so many people and for the good advice already given!

                      Coming to terms with the diagnosis and the uncertainty of when and how things will develop is never far away from my thoughts. My husband it handling it amazingly well, which obviously makes it “easier” for me than if he wasn’t. For now we’re doing our best to make the most of this time whilst I am slowly and gradually arming myself with knowledge and advice that others on this forum have passed on from experience. Family and friends are being wonderful but we’re all in a world we knew very little about in the past. So thank you again - I’ll be back

                      L x

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                        #12
                        Sending you lots of love Lyn-E

                        My husband was diagnosed in April 2021 and it has been a bit of a roller coaster since. I am having counselling which does help to process my feelings, fears, grief etc. We initially both fell into a deep dark pit after diagnosis, but managed to climb out. We have had some very dark days, but also have some amazing and wonderful times. We do actually laugh a lot, although reminiscing does bring about frequent tears - we do both mourn the long and happy future that we thought we had, but we also cherish our time now.

                        It is easy to say make the most of the good times, but we try to live on the basis that today is the best he will ever be, so do what he can. (and if he doesn't want to do anything that's ok too.)

                        Enjoy each other, we have always been close, but this is now a whole new level. We spend a lot of time appreciating what a good life we have had together. It is now very different, but we are now even closer in many ways.

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                          #13
                          MMG
                          Sending love back to you and thank you for your wise words. I haven’t considered counselling as yet - but I’m not ruling it out.
                          Like you two, we still laugh and have happy times but you sum up perfectly feeling of loss for the future we thought we had. So yes we are making the best of this time and we do feel very close and thankful for the life we’ve had together so far… but I never have liked roller coasters!
                          XX

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