Announcement

Collapse
No announcement yet.

update...

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    Hi Lynne

    Originally posted by Lynne K View Post
    Very good planning strategy. Lynne
    Thank you - planning is my stock in trade from my working life, so I tend to run private projects like this one alongside the projects we run for our clients.

    And strangely those are also often things where you just need to add money which of course is why I became a professional fundraiser!

    Last date to vote for me as an MND trustee I think?

    Warmly
    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"

    Comment


      #17
      Hi Andy,

      Good luck with finding a suitable property.

      While reading your post, I was reminded of the TV programme 'Location Location Location' ..... just a thought ... perhaps Kirsty and Phil could help you with your property search??? ... and I expect all your forum fans would love to see you appear on TV!

      ... and I hope you get voted in as a Trustee!

      Best wishes.

      Kayleigh
      Last edited by Kayleigh; 5 July 2019, 17:39.

      Comment


        #18
        I voted for you, hopefully you were the Andrew option!
        Will ask hubby to do the same.

        Comment


          #19
          Hi Kayleigh

          Originally posted by Kayleigh View Post
          While reading your post, I was reminded of the TV programme 'Location Location Location' ..... just a thought ... perhaps Kirsty and Phil could help you with your property search??? ... and I expect all your forum fans would love to see you appear on TV!
          What an interesting idea - I will try and find out who their agents are!

          Actually it was this bloke that got me thinking about a project with his programme DIY SOS - https://www.nickknowles.com

          I am just raising some money for it - the project, I mean, not Nick Knowles!

          But somebody said he parted company with the MNDA?

          Warmly
          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"

          Comment


            #20
            Originally posted by nunhead_man View Post

            I am just beginning to experiment with eye gaze and have the experts coming around later in July to show me properly how to set it up
            May I ask Andy if you got/are getting a Tobii 4C? Or a different one?

            And "the experts" - are they AAT, techie mates or paid IT pros?

            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


              #21
              Take Part in...

              Location, Location, Location https://www.channel4.com/4viewers/ta...ation-location

              DIY SOS http://www.bbc.co.uk/showsandtours/takepart/diy_sos

              You never know!!!
              ​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 Ellie

                Originally posted by Ellie View Post
                May I ask Andy if you got/are getting a Tobii 4C? Or a different one?

                And "the experts" - are they AAT, techie mates or paid IT pros?
                I picked up 1 of the Tobii units but I am having trouble getting on with it - the physical unit does not stick to my current screen very well and perhaps because of that the software does not work very well.

                I spoke to the Smartbox team at the MND Association AGM and they suggested Alea?

                As to my experts, it is partly just me experimenting, but also I have support from....

                Senior Practitioner, Specialist Equipment Service
                Kent and Medway NHS and Social Care Partnership Trust
                Disablement Services Centre
                Medway Maritime Hospital

                Warmly
                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"

                Comment


                  #23
                  Good morning Ellie

                  Originally posted by Ellie View Post
                  Take Part in...You never know!!!
                  Thank you - I think DIY SOS is probably not sensible given our occupational therapist's and architects advice that is simply not possible to fit a big enough footprint on the ground floor if I ever need a powered wheelchair.

                  But I have tried Location, Location and Location.

                  On that front, given I get excellent service from Kings and the support team in Lewisham locally. Where else might I get a similar level of care?

                  Would Sheffield be an option for example?
                  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"

                  Comment


                    #24
                    Originally posted by nunhead_man View Post

                    I picked up 1 of the Tobii units but I am having trouble getting on with it - the physical unit does not stick to my current screen very well and perhaps because of that the software does not work very well.
                    Is it a touchscreen? The adhesive on the magnetic strips won't stick to a touchscreen surface. If I use the 4C with a tablet, I use BluTack, or similar, to hold it in place as it's only for temporary use.

                    My previous laptop didn't have enough of a bevelled edge for the magnetic strips, so I used those peel off picture hanging tabs and raised the tracker with BluTack to ensure a good position for calibration - improvisation is an essential talent in this game The magnetic strips work perfectly on my current laptop.

                    Is it calibrating well?

                    What software are you using?

                    Love Ellie.

                    PS Andy, it's best to use a powered external USB drive for the 4C, even at least some of the time.
                    Last edited by Ellie; 22 July 2019, 14:54.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #25
                      Originally posted by nunhead_man View Post

                      On that front, given I get excellent service from Kings and the support team in Lewisham locally. Where else might I get a similar level of care?

                      Would Sheffield be an option for example?
                      Excellent point Andy - if you're thinking of relocating, you need to know what MND services will be available to you before moving.

                      I know folk here are well looked after in the Sheffield MND Care Centre, but don't know about community services.

                      There are people here from all over England, attending Sheffield, Cambridge, Nottingham, Northamptom, Salford MND Care Centres to name but a few outside London. Hopefully you'll get some useful feedback on community services too. (can't imagine Kirstie & Phil doing that for you )

                      Good luck.

                      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


                        #26
                        Not trying to influence you Andy. Services are great in Bury, Radcliffe, Whitefield etc Our services have recently won the contract for Salford Royal so they must be doing something right
                        Good luck. 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.

                        Comment


                          #27
                          Hi Ellie,

                          No it is not a touchscreen - I am using it on a PC monitor - look for HP ZR24W - which has a flat bezel but has controls for the screen on the right-hand side which means I cannot mount the eye gaze device centrally

                          It calibrates okay but then does not seem to work

                          The software is the Tobii supplied eye gaze software

                          I am not sure what you mean by using a powered external USB drive for the 4C - the device I have simply plugs into a USB port on my workstation?

                          Warmly
                          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"

                          Comment


                            #28
                            Hi Lynne

                            Originally posted by Lynne K View Post
                            Not trying to influence you Andy. Services are great in Bury, Radcliffe, Whitefield etc Our services have recently won the contract for Salford Royal so they must be doing something right
                            Thank you for the information and also you Ellie in relation to Sheffield - it was already on our list.

                            We have a hesitation in that my model for moving in later years was that of a father of one of my friends at university, who was an ambulance man. He, when I first knew him had the deputy controller's job in Hertfordshire and as he was a sailor, he decided he wanted his final job to be service controller's job in either Somerset Devon or Cornwall as the sailing is good there especially on the South coast.

                            So he got the Cornwall job and spend his last working years creating a space for himself in the community so that when he retired he had his work friends to rely on, as well as those he had already made in the local village and in the sailing club.

                            This led to my first fundraising consultancy job - for the Cornwall First Air Ambulance

                            In general, moving after you finished work seems to be a mistake as you become quite isolated if you are not very careful.

                            But hey - when economics and health drive.....
                            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"

                            Comment


                              #29
                              Originally posted by nunhead_man View Post

                              No it is not a touchscreen - I am using it on a PC monitor - look for HP ZR24W - which has a flat bezel but has controls for the screen on the right-hand side which means I cannot mount the eye gaze device centrally
                              Hmmm, not ideal but worth trying to find a way to mount it centrally, allowing for those right side buttons by building some sort of buffer?

                              Originally posted by nunheead_man View Post

                              The software is the Tobii supplied eye gaze software
                              That software is just the Tobii drivers and eyechip, not the 'mouse' - you need to use either Windows 10 native eye control (beta) - search in settings or an open source program. The best one by far is in GitHub - search for Masta Lomaster bkb and scroll down for English version. Don't be put off by the Russian part, the guy is a true gem, as well as a genius. I've used it for years without issue. It's really stable.

                              Originally posted by nunheead_man View Post

                              I am not sure what you mean by using a powered external USB drive for the 4C - the device I have simply plugs into a USB port on my workstation?
                              Yes, it is a plug in USB2.0 but there have been some stability issues, which I read about on a tech forum when I had issues and the remedy is to use a powered USB drive to isolate it from the PC, at least sometimes.

                              Hope you manage to find a way to attach the eye tracker onto the monitor, use some mouse emulating software and Bob's your uncle!!

                              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


                                #30
                                Good morning Ellie

                                Originally posted by Ellie View Post
                                Hmmm, not ideal.....
                                Thank you again for such a detailed reply - I take a note of all this, so may come back to it.

                                I say that because the Tech (technician) who came from the NHS service I mentioned above with the occupational therapist pointed out that given I had the advanced version of the voice dictation software (Dragon) there is a voice control option of the screen with some really quite sophisticated features.

                                The tech came from Specialist Equipment Service, Kent and Medway NHS and Social Care Partnership Trust, Disablement Services Centre, Medway Maritime Hospital. They emphasised I did not have to pay for any equipment I needed, and they would supply e.g. a head camera, as opposed to an eye gaze system when the time came.

                                I suspect, although I do not know that I may lose more of the function of my hands before I loose my voice, so they have left me to play and will come back to me in a couple of months to see what has developed - I suspect, given the speed of my development I may need a longer interval than that.

                                As an aside, I do notice that medical professionals in general seem to be more used to people with a much faster progression than I seem to have and so, for example, set review dates that are to short in interval.

                                Whilst thinking about this, I also have a neurologist who worries about me losing weight (I am over desirable BMI) because, it turns out he worries that when I need a peg I will need that extra weight whilst I adjust. That is all very well, but not very helpful if I die of a heart attack in the meantime!

                                There is no MND in my family , but there are certainly heart attacks and strokes - because stroke is 40% genetic where as MND is 10%!

                                Warmly
                                Last edited by nunhead_man; 27 July 2019, 11:11. Reason: more info
                                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"

                                Comment

                                Working...
                                X