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    My Dad

    Morning
    I've been lurking round these boards for a few months whilst my Dad went through all the tests and sadly yesterday he was formally diagnosed with MND. We are all utterly devastated,

    I have lots of questions but my main concern right now is getting all the help in place he will need. The neurologist yesterday was hopeless, my Mum said they weren't even in the room 15mins, he gave the diagnosis and said the clinical nurse specialist would visit next week.
    No mention of the type, genetic implications, no follow up with neurology, shouldn't he now be under a specialist? He mentioned the drug but basically said no point it only gives you a few extra months.

    Am cross they weren't given proper support yesterday, it was basically you have MND, the nurse will deal with you.

    #2
    Well done for posting though I am very sorry you're here. It is a devastating time so take little steps, one day at a time and enjoy the time you have. We are here to support you. Be Strong you're not alone. ๐Ÿ’ช๐Ÿ™๐Ÿค—๐Ÿ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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      #3
      Drumond30 welcome to the forum and so sorry for your dad's diagnosis. The initial shock is mind blowing as I'm sure you've all sadly discovered.
      In my experience although it felt initially nothing was happening I can say that very quickly changed. Once the neurologist sends his report to dad's GP and makes onward referrals all the relevant health professionals will hopefully make contact. It can be overwhelming.
      The neurologist who gave me my diagnosis is the specialist responsible for me...your dad will receive a copy of his report. This should give more clarity.
      It's good your parents have you for support...

      Take care & keep posting

      ๐Ÿ‘๐Ÿป
      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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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        #4
        Hi Drumond
        Sorry your dad got this diagnosis and as Linda said the professionals should start making contact.Keep a book of names and contact numbers as itโ€™s confusing at first.Hope the MND nurse can answer questions you have and explain the support on offer,
        best wishes
        Mary

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          #5
          Sorry to hear your news. I was diagnosed about 6 weeks ago, and this initial period is a crazy time of being introduced to the medical team who will be handling his case going forward. This will involve specialist nurses, occupational therapists, special physio's etc.
          The good folks on this forum assured me it would settle down eventually, and indeed it is starting to come together.
          I am finding this place a gold mine for advice and support from a friendly bunch who REALLY know what you are going through from their own experience.
          You are welcome here. Keep posting.
          Hi, I'm Eddie.
          Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
          Still walking and talking, and wondering what the future will bring.

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            #6
            Thank you all for the responses, as I said I have been lurking on the boards for a while and your support of others and positivity is humbling. I am glad there will be support out there for us.

            I have contacted MND org this morning and they said someone would call us back. They said it should have been explained clearly at the appointment what the next steps were and that Dad will absolutely still be seen by a specialist consultant. None of this was explained yesterday, my parents were left with the impression that the hospital wouldn't ever see Dad again. My parents are completely capable but I can see I will have to do a lot of advocating on their behalf, which I absolutely will do. I wouldn't have allowed then to be ushered out of a 15 min appointment yesterday with no information! Hopefully they won't have that experience again!

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              #7
              Drumond30 Hi, welcome to forums. Iโ€™m surprised by your parents experience with the neurologist. I hope that she/he was just having a bad day and future appointments that Iโ€™m sure will occur will be much improved. A list of questions to ask is a useful thing to take. Lynne x
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

              I'm staying positive and taking each day as it comes.

              Comment


                #8
                A warm welcome to the forum Drumond30 I am appalled and dismayed by the heartless way your father and mother were treated by a Consultant Neurologist in the so-called caring profession...

                Originally posted by Drumond30 View Post
                ... my parents were left with the impression that the hospital wouldn't ever see Dad again.
                That may well be the case - let's hope that's the last encounter with Dr Compassionot at least - click here to find out which MND Care Centre/Clinic is nearest to your Dad. You'll also find details of his local MNDA Branch.




                Originally posted by Drumond30 View Post
                He mentioned the drug but basically said no point it only gives you a few extra months.
                again, utterly appalling treatment by the Neurologist. it is your Dadโ€™s choice whether or not to take Riluzole, itโ€™s not the Neuroโ€™s. Whether it extends life by 3 days, 3 months or 3 years is irrelevant - it is approved by NICE as the only treatment for ALS/MND, so he should darn well be offered the chance to try it and to start taking it ASAP. As an aside, real world evidence shows that Riluzole extends life more than the 3 months shown in the trial data.

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

                โ€‹

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                  #9
                  Hello Drumond30 welcome to the forum. xx

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                    #10
                    @Drummond30 Hello and welcome. Sorry for your Dad's diagnosis. You'll find lots of help, support and advice here xx

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