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Hello I’m Douglas

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    Hello I’m Douglas

    I’m 58 and this year have had a few trips/falls; lost a lot of weight and saw my speech dwindle to almost unintelligible.

    The GP thought either a stroke or MND so signed me off work ( I have been a software engineer) from the 18th September for six weeks

    I was given the clinical diagnosis of MND at Salford Royal last week and am waiting for the MRI scan results.

    I really feel sorry for my wife In all this xxx

    Hi Douglas,
    Welcome to the place you'd rather not be. I was diagnosed in 2016 at the age of 58, I'm a software developer working increasingly from home prior to my earlier than planned retirement in January.

    I completely understand the feelings you have for your wife with this. After a few weeks of emotional roller coaster I came to terms with the situation but my wife seems to really struggle.

    Good luck with your fight against MND, there are some really nice people on this forum who will give you useful advice.

    Stay positive and keep smiling (that's what I do).

    Sporadic MND/ALS - Limb onset - Diagnosed May 2016
    night time NIPPY, cough assist, PEG

    Today is the tomorrow I feared yesterday


      Hi Douglas and welcome.

      Sorry about your diagnosis. As Andy said, it's an emotional roller coaster BUT things do settle down and you'll have laughs again!!

      I'm sure you've found Apps for text-to-speech and, if your hands aren't up to typing, there's eye gaze tech which gives full PC access (I'd be lost without it)

      Hope you've good support.

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


        hi Douglas welcome . my Husband Mick was 58 when he was diagnosed on 17/7. ( he turned 59 2/10)


          Hi Douglas, a warm welcome. I was diagnosed in September and I'm starting to have big chunks of the day when I almost forget about MND, but things are up and down for a while. I hope you find the adaptations that suit your needs and make life easier for you xx i feel for your wife and send love x My mum can barely cope with it, bless her (I'm 45)
          Lisa x


            Hello and welcome Douglas,

            You and your family will take time to adapt and accept life with MND but unity and love will help everyone to cope. Technology today is a huge help and of course you have a head start through your profession.

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


              Hi Douglas, sorry that you have had to join us on this scary journey. I too attend Salford Royal under the care of Miss Amina Chouch. I hope that your local services have been in touch about lending you walking aids and other helpful gadgets.

              Seeing as you are losing your voice its probably a good idea to bank whatever is left or get a family member who sounds a lot like your healthy voice to do so. I and others on this forum have built our voices with Modeltalker. You or somebody records 1600 sentences and with some tweaks that I won't bore you with they create a synthetic voice as close to your natural voice as is possible. You can then use that voice in various speaking aids. I downloaded mine to my Ipad to the Predictable app that I previously downloaded.

              We are in Bury but most likely moving to an adapted bungalow in Radcliffe before Christmas. Take care and stay safe. Lynne
              Last edited by Lynne K; 22 October 2018, 17:27.
              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.


                And I am Christine and I'm the wife

                This has been a shock because Douglas has always been the healthiest person I know, bar none. I wouldn't feel sorry for me though - Doug has already supported me through cancer and heart problems so I think it's my turn - but it IS hard to come to terms with the fact that MND has no happy ending


                  Welcome Douglas, and Christine

                  You will both find a lot of support, knowledge and great advice from the members of this forum.

                  Wishing you both the very best in the days ahead.



                    Hi Christine & welcome.

                    Sorry to hear of your own health problems - you sound like a strong woman.

                    No, you're right, there's no happy ending to MND, but there are happy times to be had in the meantime ! Every single person dies at some stage - having a terminal illness just focuses the mind.

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


                      Hello Douglas and Christine, and sadly welcome, I am a mother, daughter (33) diagnosed Sept 17 a few months after having a baby also has an 8 year old, We are totally devastated by this disease, it has brought down every member of the family Aunties, uncles, cousins, in laws etc etc, I will continue to look after her and her family, physically, mentally and emotionally (lots of crying) for as long as it takes, it’s what you do.


                        Hi Douglas. My husband is 58 like yourself, we're also at Salford.
                        Your story is very similar to my husband's, he was also an engineer.
                        Sorry to hear about your diagnosis.


                          Hello Douglas and Christine...sorry you've had to join us here but welcome. My husband is also a Mancunian and at Salford. He was diagnosed in 2008..very fit prior. It took me a long time to come to terms with his diagnosis but once things settled down and we got over the shock we realised life had changed but it wasn't over so we get on with it every day and give thanks what he can do and try not to dwell on negative stuff because it's a waste. Some days are hard but you'll find lots of support here and great advice. Best wishes to you both xx


                            Douglas and Christine and a warm welcome to the Forum. It is sad that you find yourselves here but very encouraging that you obviously support each other very much.

                            It is a long hard road but after the initial shock and grief you will come out the other side coping with your different life . Try to think on the positives and not the negatives and you will get through it easier.

                            Please ask any questions you want and there will always be someone to answer.

                            I am not from Manchester, as you may have noticed I come from "over the hill " in Yorkshire

                            Love Chris


                              Hi Douglas and Christine,
                              Welcome to the forum, although I am obviously sorry you need to be here.

                              The diagnosis is such an awful shock but it sound like you are a really close couple and I hope you have some really good outside support.

                              It hits the whole family really hard but eventually you adapt and laugh again. Everyone affected has an occasional meltdown but I try and enjoy each and everyday, smile and take the positives. No one, in life, knows what tomorrow will bring .

                              There is always great support and advice on here.
                              Love Debbie