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    #1

    My experience

    I don’t see the point of me existing anymore. I’m not having issues mentally I just don’t see the point anymore.
    arms useless so I eat like a dog and can’t wash so I stink, legs useless so can’t move so sit in chair all day because everyone is at school or work, voice don’t work either. All I do is sit in a chair all day then sleep in bed. Ground hog day what is the point? All I do is make work for other people. Rant over. So my question is what do my fellow sufferers do to not feel like this?
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    #2
    I feel the same way mate but Hospices offer support like no other. Try it before you die 😁x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      What sort of support Matthew ? I can’t get a email response lately
      • Likes 1

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        #4
        Carers mate I can't get notifications either.
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx
        • Likes 1

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          #5
          Wayne, have you had a referral to the hospice but they're not replying to your emails - I wonder if it's an [email protected] type, generic address which may not be looked at often enough.

          Assuming you don't have a palliative care nurse, ask someone to ring the hospice for you - GP, MND nurse, community nurse, MND Clinic, or any healthcare professional for whom you have a contact and always replies to you.

          Sorry you're feeling so low, if at all possible, talk to someone, and, if a bed bath or a sink wash is out of the question, maybe wet wipes would do for a day or two. My hospice had a jacuzzi bath for its day patients, and was well used, as you can imagine!

          I get by because I keep busy and have carers to be my legs, arms and a million other things.

          Sending you an enormous 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.
          ​

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            #6
            All I can offer is a hug.

            Denise xxx
            when i can think of something profound i will update this.

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              #7
              Wayne your mnd has progressed more than mine, and I sometimes wonder how I would cope when I get to your situation. I guess hospice workers must be used to people feeling like you are, hope you can get some support there, and maybe some practical help. Sending love and hugs x
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                #8
                Hi House - I feel similar. Can't give easy easy answer. Ellie's and Matt's suggestion of trying to get to hospice or somewhere can get bath or shower will be good start. Carry on because it suits you to carry on. Nuts to everyone else.
                • Likes 1

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                  #9
                  Hi House 44, There is support.would it help to have carers to assist with your personal care daily?
                  Think you live in Birmingham and have you been referred to your local hospice?There are several in Birmingham .If not if there is a health professional involved you can ask for urgent referral.

                  My experience is that hospices have palliative care teams who aim enhance your perceived quality of life in so many ways.Hospices support people like us .

                  It sounds like you are rock bottom as everyday feels the same .It’s awful to feel you can’t maintain your dignity and again the OT attached to the hospice should be able to offer advise.Hospices are expert in helping people living with life limited illnesses to reach their optimum quality of life .

                  Many of us on here are having counselling and I find that useful to talk through how I feel etc.Would that help you.again can be accessed via the hospice.

                  MND association also might be able to help with a volunteer.There is also a helpline you can ring .

                  Do your family need support in any way to help care for you?

                  We are all at different stages but I learn from people on here how they occupy themselves when unable to move independently.Many use audio books, listen to music, use social media, watch TV,Go for trips out in wheelchair ,enjoy visits from family and friends etc.Get out to sit in the garden .

                  The big thing is you need to share how you are feeling ASAP with maybe a health professional.The basic issue of personal care should be easily improved by having carers daily.
                  Really hope you get some help very soon
                  Best wishes
                  Mary




                  .

                  Comment

                    #10
                    Originally posted by House44 View Post
                    I don’t see the point of me existing anymore. I’m not having issues mentally I just don’t see the point anymore.
                    arms useless so I eat like a dog and can’t wash so I stink, legs useless so can’t move so sit in chair all day because everyone is at school or work, voice don’t work either. All I do is sit in a chair all day then sleep in bed. Ground hog day what is the point? All I do is make work for other people. Rant over. So my question is what do my fellow sufferers do to not feel like this?
                    I’m sorry that you feeling so low. The suggestions that you’ve had above with regard to carers and the hospice sounds good to me. Mary’s suggestion of having one of your professionals contact the hospice on your behalf sounds good but maybe an MNDA volunteer visitors could do this too.

                    I also think that when your personal care is sorted out how you want then you ought feel much better.

                    Hugs, Lynne x
                    Last edited by Lynne K; 19 May 2021, 07:22.
                    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.

                    Comment

                      #11
                      THIS IS THE SCANDAL OF OUR TIME, WAYNE. It makes me very angry!

                      You should now be on CHC and receiving Government funding for your care.

                      I have not fed myself since 2013 or had a shower. There are alternatives that social services know all about.

                      You or your family must raise a STINK, go to the press if necessary and don't let the Bast*rds grind you down!

                      Comment

                        #12
                        Well said Cliff and welcome to forums, Lynne
                        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.

                        Comment

                          #13
                          I so feel for you, especially as I am heading that way of useless arms and legs. I am lucky to have people to help me.
                          I get advice of "why don't you take up a hobby? " easy to say when they have arms/hands that work.
                          My current way of passing time is the small remote of my Firestick, that I am able to control with my thumb, it gives me access to films, documentaries, games, news and my favourite, Youtube where I can learn so many things about different subjects .
                          Diagnosed 2nd Jan 2020
                          Both arms/shoulders affected, left worse than right.
                          Progressive Muscular Atrophy suspected

                          Comment

                            #14
                            Originally posted by Beemer View Post
                            My current way of passing time is the small remote of my Firestick, that I am able to control with my thumb, it gives me access to films, documentaries, games, news and my favourite, Youtube where I can learn so many things about different subjects .
                            Dave, I just want to reassure you that, even if your thumb fails, you can continue doing all of the above, and more, with eye gaze. xx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                            ​
                            • Likes 2

                            Comment

                              #15
                              House44, it is really tough for you, and shows just how isolating and frustrating this illness can be. Here, though, we are on the forum of the national organisation set up to represent our interests...get them working in your behalf, along with your GP or mnd nurse, whoever you have that is interested in you and your needs. It's a state of shock, losing so many abilities in a short space of time. Keeping busy and finding a goal is the key, it's just bring able to find your way there. Hugs x

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