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    #16
    St Luke's in Sheffield, the irony is I have been nil by mouth for six months, I just enjoy the process.

    I don't think it makes a difference to prognosis but why make everyone miserable? I have squeezed every bit out of my time with MND. I wish it was longer but hey ho, nothing I can do is there?

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      #17
      Hi Dee,

      It would seem that she has given up. Maybe she will think differently when she gets back home but I fear by what you have said that won't happen.

      As for what to talk about, don't try to be too careful and just talk about things that you have been doing etc.

      People are all different and I have known quite a few over seventy year olds with Mnd that have been upbeat so to speak.

      I think that I have a similar attitude to Steve's but doubt that I will be so when I get to similar situation.

      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


        #18
        Hi Ellie and Steve,

        I won't wash my mouth out as I believe that use two cheat. I think that you use a switch or two as well.

        Steve, I would be careful with what you write, the benefits people could be looking in a say that you could get work as a typist and take away any support.

        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


          #19
          lol Terry, work doesn't effect PIP, they don't want to discourage work.

          The same with social support for care. They weren't interested in wages, only savings and being relatively young we don't have many.

          Comment


            #20
            Hi Terry. Thank you for your reply. I don't think that me sister in law has ever been upbeat even before MND. She has always been a kind of half empty as opposed to half full person. And this has just continued through the MND. I suppose that is what I think is the really sad part. She could have had at least 2 years living her life with MND instead of just locking herself away from people and places and activities, but now the chance to do all those things has gone and I just think that is really sad. But maybe she doesn't? I hope that she doesn't regret the last 2 years, but she never discussed it, so I guess I will never know!

            I think of her often and worry about her and feel devastated for her. Prior to her becoming ill, I didn't know much at all about MND. I suppose that's just like most other people until it touches your life. And then, well, me anyway, I double count my blessings every day after seeing what my sister in law is going through and has gone through up to now. God bless you Terry.
            Love Dee

            Comment


              #21
              Hi Dee,

              It's obviously painful for you to think of sis-in-law's last few years, but sounds like she did what she wanted to do. Some people are content to keep a low profile and rarely go out; I suppose it's a coping mechanism mixed with the practicality of actually planning a trip out. But don't beat yourself up over the last few years! You're there for her now, that's what counts.
              So many of us have had really close friends fall out of contact with us. The fact that you write to her and make the long trip to see her, massage her hands and tell her you love her is truly heartwarming.
              Whatever happens, happens; much of it is up to her. She is lucky to have you.

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

              Comment


                #22
                Hi Dee,

                Try to get in contact with the nearest branch of MNDA to where your SIL lives. You can search on the main page for branch locations. She may agree to go to their meetings for support and information. If not they will have association visitors AV's who do home visits. I find the meetings invaluable and the support is both financial (funding for equipment) and morale boosting.

                I would recommend the branch meetings to everyone be they carers or patients. I suggest for the first visit to take a friend or relative.

                Best wishes.

                Barry
                I’m going to do this even if it kills me!

                Comment


                  #23
                  Originally posted by Terry View Post
                  Hi Ellie and Steve,

                  I won't wash my mouth out as I believe that use two cheat. I think that you use a switch or two as well.

                  Love Terry
                  Listen Beardy,

                  I don't use switches, just eye gaze. The "hover" or "dwell" function is set at a fast rate, so as soon as I dwell on a letter or icon, it clicks.

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

                  Comment


                    #24
                    Originally posted by Ellie View Post
                    Listen Beardy,

                    I don't use switches, just eye gaze. The "hover" or "dwell" function is set at a fast rate, so as soon as I dwell on a letter or icon, it clicks.

                    Love Chimp.
                    Same for me.

                    Comment


                      #25
                      OK Chimp;

                      Haven't you got any other tune, please don't "Dwell" and hover over this one subject.

                      I can have a mouth wash later in the shower, just hope my jaw doesn't click.

                      Love from your beardy friend.

                      PS:- It's good to know that eye gaze works so well.
                      Last edited by Terry; 23 February 2016, 20:49. Reason: spelling
                      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


                        #26
                        I'm defiantly reporting you to the social Steve; (As you should be out working and not claiming benefits, LOL)

                        20 words a min without other switches.

                        I'll wash my mouth out twice then. Is mouth wash OK as soap isn't so nice.

                        Love Terry
                        Last edited by Terry; 23 February 2016, 20:56. Reason: Just to clarify things a bit
                        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


                          #27
                          Referring to eye-gaze, discussion of its goodness is pointless because everything depends on the quality of voluntary control of the eye muscles and eye lids, it is excellent if you are fortunate enough to have good eye muscles. We have used the same system as Stephen Hawking. We tried it but had to give up; he uses a proximity detector on his spectacles which detects when he blinks. Sadly my wife's blinking is totally involuntary making a nonsense of any signals that she gives. The actual mapping of her eyes is very good but the lateral and vertical movements of her eyes have become increasingly difficult to control. If you visit my blog at mndexperience.blogspot.co.uk you can see other ideas. We have been through a large range of software and switches, all useful but eventually redundant due to the progress of the disease We have been reduced to the Megabee or a frequency chart. The megabee is now even more difficult because her eye movements are full of errors because it requires both side to side and up and down added to the fact that she cant hold her eye lids open long enough.
                          I have now gone back to a program I was using with switches. That is "Write online" by CRICK software. I use it with the excellent frequency keyboard in conjunction with the word prediction, which works really well. I have to manually scan with the mouse and often have to verbalise because the reduced eye movement forces a long delay as she tries to read what is on the screen. Since her eye movements are almost totally involuntary now her eyes lock onto whatever she is looking at, so I have to sit opposite her and wave a torch to unlock her eyes. It is very slow process but it does work with very few errors and her face lights up when the word she wants pops up on the predictor.
                          I am appalled that anyone can be so rude on a forum as important as this. If the cap fits wear it !! My very best wishes to everyone else.

                          Comment


                            #28
                            Hi Mr Blossom I am not sure who was rude, but maybe they have been frustrated with eye-gaze. Dude

                            Comment


                              #29
                              Hi Blossom;

                              Thanks for your very informative post as it's so nice to have the alternatives if Eye gaze doesn't work for some reason.

                              Nothing on this thread was meant to be rude in any way. It is a very important subject and thread, especially for me as I might well be there soon. I was so impressed that both Ellie and Steve could manage about 20 words per minute using it.

                              Not being able to communicate is BAD, and I'm pleased that you have found a way that is reliable, albeit vary slow. I have witnessed two Mnd people that could not communicate first hand and it is horrible.

                              It is so good that you have worked through things to find the best solution that you can as others only have a SALT and carers to help them.

                              I am sorry if anyone found my posts rude in any way, I have been having banter with Ellie and Steve for quite a while.

                              I have edited two posts, one because the key board predictor did not write the spelling right and one to help clarify what was meant by the post.

                              Kind regards, 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


                                #30
                                Blossom,
                                Nobody was being rude - it was banter amongst friends.
                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                                Comment

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