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    Hello everyone my name is Jackie and this is the first post from me , my husband ANDY was diagnosed officially In February the day before my birthday but it has been going on a lot longer than that , we have had an emotional rollercoaster since August last year . He was told then he had MND , then went for more tests At queens square where they told him he didn’t have it ,,, and then told in feb that he dose have it , it’s been an awful time , he’s gone down hill so quickly and he is so weak . I knew it was bad from the beginning and when they confirmed my worst fears I was completely devastated and still am .. he is only 59 and never done anything wrong to anybody and is kind and caring,so why him ?????

    #2
    Oh Jackie, I'm so sorry to read what both you and your beloved Andy have been through. There is no easy answer to the "Why him" question, I'm afraid.

    As if Andy's diagnosis weren't bad enough, you've been thrust into a nightmare lockdown situation which can only add to your trauma

    Has Andy managed to get good support in the Community - by that I mean OT, Physio, Dietitian, Nurses etc - to help you both cope with daily challenges?

    Usually the local hospice is a great resource centre, often better/more understanding than Community services, and offer OT, Physio, counselling, therapies (the latter 2 normally open to family members too) If you haven't already, it's worth contacting them for a chat and find out if they are currently offering any services. Please don't be horrified at the mention of "hospice" - they aim to improve the lives of people with life-limiting conditions such as MND.

    Welcome to the Forum, sorry you've had to join.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      I was diagnosed 2 weeks ago and the support from the MNDA, neurologists and here on the forum has been fantastic. We are all here to help each other on here.

      Comment


        #4
        Jackie, I’m really sorry about the nightmare journey that Andy and you have had up to now. I hope that now there’s a definite diagnosis then things can get moving on the support side. Does Andy already have an OT, Speech Therapist, Physio and sometimes a Dietician? Voice banking whilst he still has a clear’ish speaking voice is a good thing to do. If you are interested then put ‘voice banking’ in the search messages box and posts about that topic will come up. Take care, love 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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          #5
          Originally posted by Ellie View Post
          Oh Jackie, I'm so sorry to read what both you and your beloved Andy have been through. There is no easy answer to the "Why him" question, I'm afraid.

          As if Andy's diagnosis weren't bad enough, you've been thrust into a nightmare lockdown situation which can only add to your trauma

          Has Andy managed to get good support in the Community - by that I mean OT, Physio, Dietitian, Nurses etc - to help you both cope with daily challenges?

          Usually the local hospice is a great resource centre, often better/more understanding than Community services, and offer OT, Physio, counselling, therapies (the latter 2 normally open to family members too) If you haven't already, it's worth contacting them for a chat and find out if they are currently offering any services. Please don't be horrified at the mention of "hospice" - they aim to improve the lives of people with life-limiting conditions such as MND.

          Welcome to the Forum, sorry you've had to join.

          Love Ellie.
          Thank you for your kind words , yes we have all of the services involved and the hospice has been absolutely wonderful, we haven’t been able to go to their groups , b cause of everything that is going on , and I haven’t been to work for 2 months because ANDY is afraid I will bring something home to him as I am a frontline worker ,
          I find night time is the worst time , I can’t switch off and then all sorts of scenarios run through my head .. he has a camera in his room so I can keep an eye on him , he has been on the BiPAP since being officially diagnosed in feb , his has hit his diaphragm very hard and he really struggles with his breathing , but still only uses his BiPAP at night ! Has anyone else’s loved one been put on a BiPAP straight away ?

          Comment


            #6
            Originally posted by bilvers View Post
            I was diagnosed 2 weeks ago and the support from the MNDA, neurologists and here on the forum has been fantastic. We are all here to help each other on here.
            I’m so sorry to hear this but I am very glad you are getting the support you need . And I thank you for taking the time to make me feel better , when you are going through your own struggles.

            Comment


              #7
              Originally posted by Jackie View Post
              .. he is only 59 and never done anything wrong to anybody and is kind and caring,so why him ?????
              I know for my sins, I am too analytical and believe in science. I do try to help people, however you must ask Andy if he has had any impure thoughts or question your religious beliefs.

              Graham
              Copyright Graham

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                #8
                Graham,

                That is an outrageously horrible post

                You have sunk to a new low.

                Jackie, please ignore that offensive rubbish - I'm sorry you had to read it.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #9
                  Oh Jackie... what a nightmare for you both. It must have been heartbreaking to have Andy's diagnosis and have it changed and then eventually confirmed. It must have had a huge impact on you psychologically as well as physically.

                  It's good that you have access to help from the professionals for Andy but I hope you are able to look after and take care of yourself too. The lockdown must make it impossible for you to have a break.

                  A warm welcome to the forum Jackie, It is a good place for friendship and support .
                  Love Debbie x

                  Comment


                    #10
                    Jackie,

                    Good to hear the hospice is involved and that Andy responded well to overnight BiPAP. Do you think he would benefit from using his BiPAP for a bit during the day too?

                    I too had problems with sore nose from a mask and I now wear a really, really comfortable mask called Amara View full face hybrid, by Philips Respironics. It covers the mouth and sits just under the nose, rather than on top of the bone, but the air is directed to the nostrils. Here is a photo, it might be useful to have it on standby in case of soreness again, especially as he really needs to be on BiPAP.

                    Respironics Amara View.jpg

                    The nights can be so bleak, I agree. Maybe you could listen to an audiobook, music, podcasts or relaxation themed content to distract your mind in bed? Many people find these good. (the BBC Sounds App has lots of good stuff)

                    Take care and sending you a big hug.

                    Love Ellie.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Jackie , my late Husband Mick was put on bipap straight away too. He was breathless and this was one of first symptoms. He never used it during the day, just at night. He tolerated it well.
                      Take care x

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                        #12
                        Ellie,

                        You are quite naive. How are people with MND supposed to read Jackie's comment? Please explain?

                        People should realise that in many parts of the world people with MND are seen as 'cursed'. Isn't that true Jackie?
                        Copyright Graham

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                          #13
                          Hi shrew
                          Thank you for replying and I’m very sorry to hear about your husband ... how long was he on it before he passed if you don’t mind me asking ... you don’t have to answer but I feel ANDY has deteriorated very quickly since February xx

                          Comment


                            #14
                            Graham are you caring for someone with this awful disease?

                            Comment


                              #15
                              Thank you Ellie I will bare this in mind ... thank you for your kind words and advice it’s very mich appreciated .

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