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    Hi

    Just wanted to introduce myself, my husband is 41 and we have 2 kids 6 and 10. He has been advised he has early onset MND with Weakness in legs and drop foot! Consultant wants to monitor deterioration over next few months before giving a conclusive diagnosis! The MND nurse is visiting tomorrow to assess his needs! So hard to get head round everything but this forum Is very useful. We live in Glasgow if anyone else from same area and under Dr Gorrie.

    #2
    Hello and welcome to the forum.

    Sorry that your husband has become a member of the club no one wants. It is uncommon to have a diagnosis of MND at his age however we have a few younger members here and the prognosis is generally better. Has the doctor prescribed riluzole? We have a few members here living in Scotland and I expect they will reply in due course. May I suggest you write a list of questions for the MND nurse since at the time you will be overwhelmed with information.

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

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      #3
      Thanks you! No he hasn’t been prescribed anything yet, the nurse was going to speak to consultant prior to seeing him tomorrow so will ask about that then.

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        #4
        Welcome to our exclusive band. Sorry to see you if you know what I mean. 😄x

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          #5
          Hi, welcome to our forums. I’m sorry about your husband’s symptoms but glad that he’s on the way to treatment and support from his MND team. It must have hit you both dreadfully. But it’s good that you’ve found this site, where you can both find help and support.

          My journey started in a similar way to your husband’s. There’s orthotics (if that’s the correct term) that can help with dropped foot. I hope that your husband gets appropriate help quickly. 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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            #6
            Hi nice to meet you.
            lots of lovely people here ready to help.
            xxx

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              #7
              Hi L14da,

              A warm welcome to you and your husband to the Forum - sorry you've had to join us, quite sure that wasn't in life's plan....

              May I ask how long hubby has had symptoms?

              I was 38yo at diagnosis, with young kids, so know how gut wrenching the diagnosis is.

              Big hug to you.

              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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                #8
                Hi Ellie, Thank you for your kind words! He has had severe cramping for the last few years and weakness when climbing stairs or getting up from a kneeling position for about a year! Early this year we noticed fasciculation’s over his arms and legs which are constant! The real alarm bell was when he couldn’t run alongside my son when teaching him to ride bike.

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                  #9
                  Although it won't feel like it to him, his progression is slow, hence why a definite diagnosis hasn't been given yet. So, if there is a wee bit of good news for you all, it's that - though obviously not having an MND in the first place would be a much better scenario.

                  There are a few members in Scotland, hopefully they'll pop in soon.

                  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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                    #10
                    Hello L14da!

                    We're also in Glasgow with Dr Gorrie (had a typo there and originally came up as Dr hottie, deary me, thought I'd share anyways hahaha)

                    Partner was diagnosed in January aged 33. Arms firstly and now I walk with him between rooms in the flat due to off balance and drop foot. Our sleeping route be is an absolute mess, tried all sorts of patterns and a sedative but proving difficult and i need the be about/awake to take him to and from the toilet etc. It's been a huge learning curve and still feels surreal to be honest.
                    ​​​​​ Alot to get your head around and far too much information to digest at once which is overwhelming at first, just as a heads up. You'll have your hands full already with 2 wee ones too. Feel free to message me if you like.

                    We've been watching plenty of 'Still Game' recently to lift lockdown spirits. Defos worth a shout!

                    Tess x

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                      #11
                      Hi L14da
                      I wish you strength and support as you come to terms with what is happening to your loved one.
                      I can only speak from my own experience and recommend you push for a diagnosis as soon as possible and that your loved one starts taking Riluzole as soon as it is prescribed.
                      I was diagnosed in June 2020 after symptoms started in Feb 2019. I would have appreciated a diagnosis or at least a suggestion of what the illness was sooner, than it came to me in June this year (16 months later). Once I had the diagnosis I was able to focus. I had a clear head to deal with what was to come. I am now in a position to accept my life as it is and enjoy my life. My family are happy now because I am happy
                      Your husbands symptoms are exactly the same as mine. I look back and feel that because I didn’t have an early diagnosis I wasted valuable time just worrying and waiting to understand what was happening. It was the worst time of all. If I had had a diagnosis I could have made more time to enjoy it with loved ones when I was in a better position to.
                      Please also think about your support from family and friends now as this is crucial and it is hard to get your head around everything. If anyone who is supporting you suggests you do something ie. “you need to get a slow cooker” or “you need to apply to DWP for a DS1500” “you have to” etc, reply by saying :- “thank you, yes please, can you organise that for me” Friends especially will step up to the mark and help you and family will just need to be told what they can do as they just won’t have a clue.
                      With a lot of love you are all going to get through this together and yes it is and will be hard to get your head around it but with a bit of planning and delegating you will all get a balance and an understanding of what is important. You are not alone and this forum will be your support too xxx
                      I have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too

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                        #12
                        Jeanette - Excellent wise words

                        Richard

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