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    Hi Terry and Debbie,
    Thanks, my chest feels hot and hurts if I try and cough. I will take it easy this weekend and rest up.
    Have a good weekend whatever you are doing.
    Love Sheila x


      I don't get looked after, properly just resentment and anger, its been horrible.


        Get well soon sheil a xx


          Hi Catsparkle,

          Sorry to hear that it is always a worry for me but true for you. Have you got anyone to turn to.

          I guess it's the carer's that are treating you badly. Don't know if the Mnda can help. Ellie seems to get rolls roice care out there but it is quite difficult to get any thing near that in a lot of the UK.

          Hugs Terry
          Last edited by Terry; 6 September 2019, 23:41.
          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.


            I am really sorry to hear that Lisa. I hope things get sorted for you.
            Love Sheila.


              Hi Catsparkle,

              I'm sorry that your care is nowhere near what you need or would like. I hope you have someone that you can talk to about it.

              Trying to keep positive, but not always managing.


                Lisa, that's awful - I'm sorry you have to put up with that negativity. It must drain the life out of you

                IDK what to advise but this cannot continue - can your district nurse, MND nurse or social worker liaise with the care provider on your behalf?

                If you have a choice, it could mean starting over with a new provider, but you do not have to put up with such an ignorant 'carer'.

                Good luck and giving you a big Ellie Hug xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


                  Its my family rather than the carers, I'd love to have the carers in more so I can stop feeling apologetic about asking for basic needs, food,drink,hot cold, healthy food i ts been awful to lose all independence before i was this disabled because it was 'too difficult '
                  On the other side, we had to move in with them because i couldn't get in to my flat and they have a tiny bungalow.


                    Oh I'm with you completely on that Lisa - sorry for getting the wrong end of the stick on your post.

                    I'll think of myself as an inconvenience and a burden on my family until the day I die, so I can only imagine how hard it must be with the added stress of living in such close quarters

                    I rely on my carers for everything and when they're not around, I tend to 'shut up and put up', unless it's absolutely necessary (which will surprise some fellow members ) and am so apologetic for disturbing my husband etc.

                    Any idea when your place will be sorted?

                    Hope you're feeling a bit better today.

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


                      Hi Lisa

                      I'm so sorry that life has become difficult staying with your family. Im sure they love you very much but sometimes the pressure of challenging circumstances can make even the closest of relationships become strained.

                      I hope when you move into your new flat it will improve the relationship between you and your parents and make life much more comfortable for all of you.

                      Just a thought - if your carers are funded by your local authority (or funded by the NHS under the Continuing Healthcare Scheme) perhaps it might be possible to get the carers hours increased sometime soon.

                      I don't know how often someone's care plan can be reviewed but it might be something you could look into, especially if your care needs have increased since your last assessment.

                      Love and hugs,
                      Kayleigh x


                        Being a community carer before all this I can advise that a care plan review can be reviewed when there is a change of someone’s condition or circumstances to ensure someone’s care needs are being met, I’m in desperate need of alternative accommodation and I’m dreading all the change but I’m hoping your alterations are completed as soon as possible, do you come under the East Dorset and New Forest MND or another local one, can they help liaise with you to get the support you need, I wish you lots of luck