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    Hi

    Please forgive me if I get this wrong. I have never posted in a forum before and it is a bit of a learning curve. Well it is my loving husband who has been diagnosed with mnd and I am terrified. We found out after he collapsed at work and was taken to hospital with pneumonia. The hospital had him in an induced coma and a machine breathing for him. Eventually when the flu and pneumonia cleared and breathing barely improved they flew him to a major hospital where after much testing they diagnosed him with mnd. They have operated and put a tube in his stomach to feed him when it gets to that stage. He is home now with me. Sorry if I.m not making much sense...crying... he is an amazing wonderful man who puts every one ahead of himself...works hard but also give so much time in charitable work to our community. I'm sorry I can't write more its too painful...but thank you for being here...and I send love to all who are affected by this horrible disease either directly or as family or carer...hugs

    #2
    Hi there Serenity,

    I haven't posted a general introduction of my own yet, so responding to you is probably a bit cheeky! I really wanted to, however, as it's obvious how distressing this last period of time has been for you. From what you write this all sounds to have happened very quickly. I'm so sorry you're going through this.

    I've been reading this forum for a few weeks while we wait to see whether my brother has MND or not, and I can assure you there is a wealth of knowledge and support here, so the one thing I can assure you of is you aren't alone. I don't have much knowledge or experience, but with the little reading I have done, your husband's path to diagnosis isn't common. Did he have any symptoms prior to his collapse at work? What a terrible shock for you....my very best regards X

    Comment


      #3
      I am glad to meet you...I pray your brother will be well..yes my husband was having difficulty breathing and our doctor had been sending him for tests for things like sleep apnea and cancer etc...but he was still trying to work through it all. thank you for your reply...I have felt so lost and scared.
      hugs x

      Comment


        #4
        Hello Serenity and Samkl,

        A huge huggy welcome to each of you. I thinks hugs are so important, especially in the early stages of testing and then diagnosis of MND.

        Serenity, you don't have to be brave here. It's one place where you absolutely know that members understand. I hope you also are able to believe that you are not alone. I'm in hospital at the moment and a couple of days ago I realised that the lady in the next bed most likely had MND, so I asked her. When she said 'yes' I told her that I also have it. Her first comment was a heartfelt "I'm not alone" - and that's not uncommon. I think most, if not all, of us feel like that at some time.

        You'll find the forum a friendly, supportive place with a wealth of knowledge, information so don't be afraid to ask questions or to share your fears.
        Last edited by Gillette; 26 September 2019, 08:18.
        Dina

        Trying to keep positive, but not always managing.

        Comment


          #5
          Hi Gillette.
          You sound so brave and yes I felt so alone and crippled with fear. I am sending huge huggys to you and thank you for your kind welcome.
          I hope your hospital trip is not too horrible hugs.

          Comment


            #6
            Hi Serenity and welcome to the forum;

            Sounds like you're been thrown if the deep end and must be devastating for both of you. Most of us have a little warning but it still comes as a shock that can take a month or two to come to terms with it.

            You mention that he was having breathing problems before hand, has he got any breathing machine at home and have breathing and blood gasses been completed?

            Please feel free to ask any questions or just share things with us.

            Best wishes, Terry

            PS:- Hi Samkl, I am going to open a separate thread for you so you get replies directly relating to you. I hope you don't mind.
            TB once said that "The forum is still the best source for friendship and information."

            It will only remain so if new people post and keep us updated on things that work or don't work and tips.

            Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

            Comment


              #7
              Hi Serenity

              I'm sorry you're getting such a difficult introduction to mnd. I think most of us on here had a slower and gentler time at the start and that gives you time to get set up and cope when times are tough. Terry is right about the breathing. Getting a handle on that quickly should be the number one priority I would think.

              Do you and your husband have much support from your family. Grown up children can help with lots of things and having them at meetings and remembering things as well as asking questions you forget to ask is useful. Parents and siblings can also help.

              Get in contact with the mnd association and they can advise you on your next steps. And try and reach out to friends. They can be a shoulder to cry on and offer support at the same time.

              Mick.

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                #8
                Hi Serenity and Samkl,
                I'm sorry that you both have family with this horrid disease.

                Serenity,what a shock! Your husband has had an unusual start to his MND journey. Hugs for you both. It must be awful to have this thrusted to you both out of the blue, with no time to think of it's possibility and prepare. Even those of us with time to read up and discuss our fears before the diagnosis, it was still a big shock and took time to come to terms with it. I bet that things are moving so fast that you can hardly catch your breath. I hope that all the help, support and appliances are in place before your dear husband is discharged.

                Samkl, I hope that your brother also has adequate support for whatever diagnosis he gets after his tests.

                Both of you, be kind to yourselves as well as your loved ones. MND has consequences far and wide. But on the bright side can bring out the very best of people and even bring people closer together. I'm not suggesting that it's a bed of roses but being kind to one another can get you over most trials and tribilations.

                Dina,
                Sounds good that you've got somebody with MND beside you on the ward. This ought make your stays more bearable, mutual support (even just a kind word) from informed new friends. Hopefully see you soon. Love Lynne x
                Last edited by Lynne K; 26 September 2019, 14:51.
                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.

                Comment


                  #9
                  Hi Serenity and a warm welcome to the Forum nobody wants to join.

                  Sorry about your husband's diagnosis. The initial shock can be very difficult to take on many different levels but, with time, it does lessen and 'normal life' takes over again.

                  Does hubby still have the trache & vent, or is he breathing on his own again?

                  I see you're a hugger, so sending you a giant one .

                  big hug.jpg

                  Take care.

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

                  Comment


                    #10
                    Originally posted by Serenity View Post
                    Hi Gillette.
                    You sound so brave and yes I felt so alone and crippled with fear. I am sending huge huggys to you and thank you for your kind welcome.
                    I hope your hospital trip is not too horrible hugs.
                    Hi Serenity,

                    You must have me confused with someone else! I'm not brave. I'm just trying to get through each day without flooding the whole hospital with my crying! I did offer to sell my tears as saline solution but the hospital didn't want them!

                    Hi Lynne,

                    Thank you. Hope to see you soon.
                    Dina

                    Trying to keep positive, but not always managing.

                    Comment


                      #11
                      Terry,
                      Hi...thank you for your very kind welcome. Yes it has been a huge shock and I feel totally lost and scared, my husband has always been the strong one now I have to learn to be strong for him...I wish I could take it from him.....

                      He has a VPAP and a devise to help him cough...his CO2 levels were so high.
                      hugs

                      Mick,

                      Yes, his breathing scares me and him...We have two grown up children but they have their own lives and small children to cope with...it is hard on them all...we only lost my husbands dad to cancer last year and now this on top of that has shattered them all...

                      I have taken your advice and contacted the MND association today.
                      Thank you for your good advice ...huggles

                      Lynne,

                      Yes it was such a shock and so fast. No, really other than the VPAP machine and tube in the stomach for when he needs it we had no preparation.. He was sent home. I am just so happy he is home. I found his dads shower chair and walker and a friend loaned us a toilet seat that is raised and has handles. so he can get up off the toilet. I am still spinning and trying to do what I can.

                      Sending big hugs and thank you.

                      Ellie.
                      Thank you for your kind welcome. I love the big hug you sent me. No he doesn't have the trache and vent now and is breathing on his own...Yes the shock was horrific and I seem to not be able to stop crying. This disease is horrible and seems to attack the most wonderful and kind people. I hope that one day I can stop crying and feel some normality. Hugs do help and hopefully, with new friends and acquaintances who may become friends on here, we can all help each other, even if it just removes the feeling of isolation.

                      Thank you again and huge huge hugs. xx

                      Comment


                        #12
                        Dina,
                        You are a true gem...humor... even with what you are going through...I think, considering, that tears are normal... I still think you are courageous. I am sending huge hugs to you and wiping the tears away (with my slightly used grotty tissue}.

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                          #13
                          It's only natural you're overwhelmed and struggling, Serenity - the fear of the unknown is horrible.

                          I don't wish to overload you with information right now, but your husband does need input from an Occupational Therapist (OT) to keep him safe (from falling) by providing appropriate equipment, such as your borrowed aids, and to make his day-to-day life easier.

                          Now your husband is home and has mobility challenges, the OT should be the first healthcare professional he sees. The others can wait until the emotions aren't as raw - it can be very daunting to see a procession of people and hear what they've to say

                          Big hug.

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

                          Comment


                            #14
                            Ellie,
                            I am almost dreading the procession of health care workers...but I have contacted the hospital who is arranging an OT visit to our home. This disease is very confronting and I am overawed by your bravery and that of others on this forum.
                            Sending HUGE hugs.
                            Love
                            Serenity

                            Comment


                              #15
                              Hi Serenity, I would like to wish you a warm and huggy welcome to the forum. I am so sorry for you husband's diagnosis, it must have been such a terrible shock with no time to prepare so it's no surprise that you're struggling.

                              After I was diagnosed I was totally overwhelmed by the amount of health care workers visiting with their very well meaning advice. It took me a while to come to terms with it and look ahead to what i might need in the future and I needed to step back, initially.
                              It does calm down and I now know who to contact for advice or support.

                              Sending you and your husband big hugs and thinking about you in these early days.
                              Love Debbie x

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