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    so so low

    So I have had mnd for over two years. No working limbs so chair bound. I can't eat or talk. So feel like a vegetable. Had it not been for my wife and young daughter I would of already of gone to Switzerland. I use eye gaze. My daughter is four and I am just crying every day about every 3-4 hours. I'm on the maximum paroxetine and I can't change it as I have tried and get horrible withdraw symptoms. I am just a wreck. Advice needed

    #2
    I totally respect your bravery in the face of your MND. I know it is mind-bogglingly frustrating.

    My family have left me to rot and worse. I too have been bedbound over 8 years, but for the first time in as many years, visited my back garden twice this year.

    With my limited arm movement I am able to be incredibly productive and I am developing a world-beating care app.

    I would advise to use the assets you have; Your brain, loving family and circumstance. For example, the world needs a first class lawyer in disability...
    Copyright Graham

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      #3
      Ben

      So sorry you are feeling so low, no advice only

      I nursed a lady who was bed bound and locked in for 20 years (advanced MS)

      She took pleasure in small things, talking books, music, she paid to get an aromatherapy massage,
      to experience human touch and favourite smells.

      Always had flowers in her room or the living room near her wheelchair

      her husband ran off with her best friend and all her money


      As a wife I am just glad my husband is here. Also we did discuss Switzerland.

      Can you communicate/connect to someone at the hospice for emotional support,
      In my experience they are good at that.

      I remind my husband that he has a good brain and many interests, which he can access using the internet
      having a meditation practice has helped him personally

      We have movie nights, last night we watched "The Rock" together for the 15th time.

      Just so sorry that you are in this crappy situation

      Kindest reagrds

      Donna

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        #4
        Good morning Ben,

        I am also sorry that you are feeling so low and can quite understand why you are.

        How much of your day do you spend on your own? And do you resent the elements of personal care the maintain you as you are?

        I'm told that loneliness and anger can turn into depression and that in turn creates more loneliness and anger.

        Go well

        Andy
        Warmly


        Andy

        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

        "Things turn out the best for people who make the best of the way things turn out"

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          #5
          Oh Ben, I'm sorry you're down a deep, dark hole, it must be exhausting 😥😥

          I think you should talk to a counsellor. Like you, my kids were very young when I was diagnosed and things looked very bleak, but after counselling, I could cope with the next day - that's all I wanted at that stage, just to look forward to the following day...

          If you haven't had counselling since your diagnosis, contact your local hospice who usually offer counselling, or ask your MND Nurse or GP. The counsellor can help use rationalise your thoughts & feelings and give you coping strategies.

          I'm aware you use eyegaze, but that doesn't have to be a barrier as you can use the 'chat facility' on the video call. I've had some medical appointments by video call and regularly chat with friends on video calls, which works well enough.

          I don't really know much about antidepressants but I assume you're working with your GP to get you on a more suital medication? I know you've to gradually reduce the dose of peroxetine and it is hard if you get withdrawal symptoms, but hopefully a very gradual and monitored reduction of it will let you change to a different med.

          I'm sorry I don't know what else to say Ben, other than be kind to yourself.

          Sending you a big hug.

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

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            #6
            The great Stephen Hawking said, 'There is nothing more COROSSIVE than pity or self-pity.

            It is especially difficult with no functioning limbs, but as Stephen showed, life can be good.
            Copyright Graham

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              #7
              I feel you dude and personally I'm not going to Switzerland when I can do it at home. 😉😀

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                #8
                It is overrated anyhow, and get this... no champers and go-go girl. . . pah
                Copyright Graham

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                  #9
                  Elon Musk is developing a 'Brain interface' Ben, and so it won't be too long before the eye-gaze technology is superceded.
                  Copyright Graham

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                    #10
                    Oh ben what can I say. My husband was very low and had a lot of negative thoughts and still does but our daughter said it's not just about him it's about all of us. You have a loving family who need you and to see you so sad will impact on them too. I know these are just words and not advice but be there for them too. I know it's not easy.
                    I suppose at least tv, computers and new technology that graham is referring to has the potential to make lives better. Not sure about brain implants but if it works I suppose it's the way to go.
                    we are all here for you.
                    Denise xx
                    ​​​​​​​

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                      #11
                      I have to say that the experience of my mums Altzimers taught me that it's the people around the afflicted who suffer more.

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                        #12
                        Good morning Ben ,I have only been diagnosed with MND/ALS for 3 months and can daily feel things in my body changing.I walk with a stick still and speech ok at present.I have tried to think of strategies for the future to occupy my mind if and when I cant move my limbs or speak.Its hard..as in early stages I just thought talking books, you tube Christian talks and meditations and films maybe.My husband and I are close and talk together about these coming issues daily for a short time only as we want to appreciate the day we have.
                        Getting low I assume is inevitable as you cope with losses to body, independence and need for a lot of care.
                        I am lucky as have local close friends who have already without asking offered to do some sitting with me as and when its needed.I talk to my friends about the things I enjoy, music, radio, books, the garden, being outside and company.Also as a catholic I enjoy daily on line prayers, Christian talks and have learnt a lot from you tube by listening to how other people manage with MND.Having a faith hasn't taken away my fears for the future but maybe lessened them.I have also started clinical psychology session via video link arranged by the hospice.It was useful to talk through emotions with a professional about emotions.
                        I don't have the answers but I guess all I try to do is have some company most days,read, pray,and enjoy time with my husband, family and friends.
                        I do realise I am not at the advanced stage yet! but the way I cope at present is counting my blessings and doing what I can to occupy my mind.
                        I am now trying to work out what I can offer if anything to others, as this I know that could be rewarding.

                        I am an ex hospital social worker so when I got my diagnosis I had seen patients with MND both in hospital and in their own homes but it didn't make it any easier when my diagnosis was given.I am however very grateful to be 66 with 3 lovely kids and 7 grandchildren all local and supportive.I am surrounded by caring people including my priest and church community.I realise that there may be lots of people living with MND and either are alone or feel alone.
                        The one thing I wish is that the MND support groups were on but now been told there are zoom meetings so I will try one of those to understand if ifs for me.
                        So Ben if you have tried to tackle your low mood as best as you can and on medication maybe clinical pschology might help.My hospice arranged that within a week!! Thats another thing..The palliative care team have been amazing and one person from the hospice rings me weekly to check if I and hubby are coping.I also have a MND association volunteer who rings me at pre agreed times to enable me "sound off" and receive any advise as needed.
                        I really hope you can hit on something to help your low mood(I am fully aware I have a lot more changes to my body to come but I can only live in today)
                        So Ben..hope today is a better day for you and you find some way forward to help with low mood.
                        Sending a hug
                        MaryX


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                          #13
                          Hi Mary, it's so nice to meet you but I wish I hadn't if you know what I mean? I personally don't think having faith will effect what happens to me after I die but I appreciate that not anyone is quite like me! 😉😀x

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                            #14
                            Hi Ben,
                            I’m very sorry that you feel so low. Could it be worse because of reducing your current anti-depressants with a view to stopping them? I hope that they find you something that works sharpish.

                            I’ve been forward planning, thinking about what I’d want when I get to your stage. But I guess that no amount of planning can really prepare us.

                            Does eye gaze work well enough to use to call someone for a chat? Or to take a call? If so could you or a carer set up a buddy system for you?

                            I’ll be thinking about you and I’m sending you love and a big hug down the airwaves, 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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                              #15
                              Life is definately all about the people around you and good entertainment to make it a little easier along the way...be it a good movie, music, podcast or talking book like someone has suggested already.

                              Me and my partner have also openly discussed the near future and his desires with how things will go/quality of life, happiness etc. It can be very controversial but every individual has their personal situation and rights to form their own opinions.

                              So lovely that you have a wee one around, as that age group will certainly brighten a room.

                              I hate cheesiness but so much inner strength required to tackle and deal with this disease. The mind can be our greatest enemy and being a disease that leaves you with only this, the mental strength required is unbelievable. So much admiration!

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