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Advice on motor neurone disease please

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    Advice on motor neurone disease please

    Hello my dad has been diagnosed with motor neurone disease recently and is in hospital. He's 79.
    I live 60 miles away and am an only child
    He's been getting weaker over the last 6 months or so but put it down to age and a bad cough.
    He's unhappily married and I'm feeling sad and overwhelmed with it all. I'm thinking we need to talk to a consultant about prognosis and support, I'll arrange this once the diagnosis is confirmed
    Any advice gratefully received

    #2
    Hi KLH and welcome to the forum;

    Sorry to hear about your dad and his situation. Mnd puts a enormous strain on the best of partnerships.

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

    Best wishes, Terry
    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.

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      #3
      Welcome KLH, so sorry to learn of your Father's diagnosis

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        #4
        Thank you both. I'm worried his remaining time will be even more miserable than it has to be. Ultimately of course it's his choice

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          #5
          Hello KLH, and welcome to the forum,

          I am sorry to hear of your dad's diagnosis.

          You will find a lot of support from the friendly folk here.

          Hopefully, your dad will soon get support and help from a team of NHS professionals including a specialist nurse, occupational therapist, speech therapist and dietitian.

          If you would like to chat to someone about what help and support is available for your dad, please don't hesitate to phone the MND Helpline. You or your dad may also wish to contact his local Regional Care Development Adviser. For further details about the local Advisers, please click on the link, below:-

          http://https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

          Please feel welcome to ask for support and advice here, as often as you like.

          Best wishes,
          Kayleigh

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            #6
            Thanks Kayleigh that's really helpful. I've emailed the local care development advisor. Don't yet know how advanced his mnd is, but hopefully will get some idea tomorrow

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              #7
              Hi KLH. Sorry to hear about your dad's suspected MND and his relationship difficulty. You have found the right place for advice, to share any worries and to chat off topic if it helps. It must be hard to be an only child in this situation. I hope that you have some family and friends that you could find support from so that you aren't taking on all of the burden alone. Lynne
              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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                #8
                Hi KLH,

                I hope everything goes as well as it can tomorrow. There is a lot to come to terms with, but there are many things that can be done to improve the life of someone affected by MND. It can all seem a bit overwhelming at first, but the lovely people at MND Connect and you dad's local Adviser will be able to talk you through things, as and when you need any advice.

                You will also find a wealth of support and advice on this forum - we are a friendly bunch , and we try to support each other as much as we can.

                It's great that you are being wonderfully pro-active and that you have already contacted your dad's local Adviser. It sounds like you are very kind and caring, and that you are doing as much as you can to support your dad - I expect he is very proud of you!

                I hope you have some support from family and/or friends.

                Best wishes,
                Kayleigh
                Last edited by Kayleigh; 13 February 2019, 20:17.

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                  #9
                  Thank you so much for the kind words, very much appreciated

                  I have talked to friends and family , I'm lucky they are supportive. But the relationship issue preys on my mind and I worry nothing will get done if I dont intervene. A nurse friend warned me it can be a very fast deterioration hence me acting now rather than waiting until he's out- if he ever gets out. I worry his wife resents what I'm doing but I make sure she knows about it and is involved in meetings. I dont want to regret anything I didnt do due to fear of stepping on toes. And I dont want him to suffer more than necessary

                  Anyway, thanks again, I'm so sad and scared so getting your advice and being able to be useful is a real help

                  Comment


                    #10
                    Hi KLH,

                    Understandably it is a very sad and daunting time for you.

                    You should be very proud of yourself for doing everything you can to support your dad at this difficult time. The bond between parent and child is precious - and I expect the love and support you show your dad means the world to him. Hopefully, his wife will realise how wonderful it is that you are being so helpful and supportive of him.

                    You are doing really well, and It is great that you are staying brave and strong for your dad.

                    Make sure that you are looking after yourself, as well.

                    Kayleigh x
                    Last edited by Kayleigh; 14 February 2019, 00:54.

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                      #11
                      Thank you Kayleigh you've been so helpful. I wish I could return the favour somehow

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                        #12
                        You have already. Many thanks you for your kind words xx

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                          #13
                          Hi KLH, welcome to the forum, although I am very sorry for your Father's diagnosis.

                          The early days are such a shock and you must feel very overwhelmed, especially as you are an only child. It sounds like your Dad is lucky to have you .

                          There is really good emotional and practical support on here from people who really understand. I have been told repeatedly that progression with MND is impossible to predict and that everyone is different so if possible, try to take one day at a time. Its easier said than done, I know.

                          I hope you have love and support around you and remember to take care of yourself too.

                          Love Debbie x

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                            #14
                            Thanks Debbie.
                            We saw the consultant Thursday and he said it's bulbar mnd. He gave my dad some hope that he's got 2 years. He also starting him on rizulole (?). Yesterday though he had a nose feeder fitted as his swallow is poor.
                            I felt better after the consultant meeting but then back to worrying he's deteriorating fast and won't last long.
                            I'm worn out with it all. I expect this isn't unusual for people with mnd and their loved ones. Impossible to know what will happen next

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                              #15
                              Hi KLH;

                              It's good that he is now getting the nutrition that he needs as that should slow any weight loose and help with his well being.

                              Is he taking liquid riluzole?

                              Tiredness is common with Mnd and also it's very emotional for everyone, with a lot of new information and running around to different places and appointments.

                              Love Terry
                              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

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