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    update...

    Hi all

    My left hand and arm are now quite disabled - my hand and arm are restricted to a bit of pokey stuff with my stiff fingers and clasping things to my chest to be assisted with my right hand.

    Now I am beginning to lose control in my right hand as well.

    So 3 things are going on in the main;

    1) We are almost certainly going to move house, 5 years on from buying the one we are in, with all the cost and dislocation associated with that.

    My ranting about the failure of the market to properly identify houses that have been converted already for those with disabilities seems to be having some effect, at least locally, as we seem to have found a couple of properties which are not that local, but are possibly close enough - in fact, we are seeing one tomorrow

    2) I am beginning to think about eye gaze to use my computer system as I still make part of my living that way - and it does stop me getting bored!

    I think I have got access to some sort of NHS resources for this, but if anybody has any advice about the sort of kit that works on larger screens - I do not really want to go to a small screen for work use - that will be helpful

    3) I am standing for election as a trustee for the Association - I got lots of experience working for charities and acting as a trustee and also a practice of being involved in organisations - and there is still time until 3 July to vote for me!

    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"

    #2
    Sorry you've to move house Andy, it must be gut wrenching for you both.

    If you use Windows and have £150 to spare, you could do worse than to buy a Tobii 4C eye tracker and have a play around with it - it's what I use. FYI:

    Max Screen Size: 27 inches with 16:9 Aspect Ratio, 30 inches with 21:9 Aspect Ratio
    Operating Distance: 20 – 37″ / 50 – 95cm

    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


      #3
      Trustee Elections 2019

      Our very own Andy is standing in the upcoming Trustee Elections and it'd be nice to have a Forum Member as a Trustee.

      Voting closes next Friday, 5th July.

      Details: https://www.mndassociation.org/get-i...e-voting-2019/

      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


        #4
        Already voted.

        Andy - could you manage Prime Minister in your spare time, please?

        Doug

        Comment


          #5
          Thanks for the update Andy, so sorry about you having to move house.

          I've voted too but I am liking Doug's idea about you being Prime minister ( as well as a trustee)

          Love Debbie x

          Comment


            #6
            Hi Andy,

            I agree, you are well worth voting for! You would make a great Trustee - not only because you have a wealth of relevant knowledge and experience but also because you are a very kind and caring gentleman who actively helps others affected by MND. Thank you for volunteering yourself as a potential Trustee and also for regularly joining in on this forum.

            I'm sorry to hear you and your family have to move. I hope everything goes as smoothly as possible for you and hopefully the viewing today went well.

            Love and best wishes to you and your family,

            Kayleigh xx

            Comment


              #7
              Good morning Doug

              Originally posted by Doug Carpenter View Post
              Already voted
              If you mean for me many thanks

              Originally posted by Doug Carpenter View Post
              could you manage Prime Minister in your spare time, please?
              Strangely, I am involved in politics, but only at a local level and totally frustrated by this coronation thing going on in the replacement Prime Minister game - please do not get me started on this here!

              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


                #8
                Hi Ellie

                Originally posted by Ellie View Post
                Sorry you've to move house Andy, it must be gut wrenching for you both.
                Indeed, and thanks - more below on that

                Originally posted by Ellie View Post
                If you use Windows and have £150 to spare, you could do worse than to buy a Tobii 4C eye tracker and have a play around with it - it's what I use
                Not one of these then!

                https://www.amazon.co.uk/TrackHat-He...y&sr=8-2-fkmr1

                Thank you - I will invest and have a play.

                Some of the reviews suggest you need to be quite close to the screen for this to work at the moment as I stand at my computer, I am probably close enough I guess - what distance are you from your screen Ellie?

                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


                  #9
                  Good morning

                  And thank you Deb and Kayleigh for voting for me.

                  On our housing position, we have had a final nail in the coffin of being able to stay here if I need adaptions to cope with mobility disablement.

                  Overall quite a bit of a bugger because of course we still do not know whether I am going to be mobility disabled although the fasiculations in my legs suggests I am so that has to be our working hypothesis.

                  In setting this out like this helps me sort my thoughts out, so sorry if this is a bit long.

                  So we spent a bit of money with an architect to look at whether she could re-plan the ground floor of this house to be suitable for my use of if I need a power wheelchair and hoist/s and wet room - and even with building a 4m extension out of the back of the house we simply do not have enough space for all the facilities.

                  And even with what she could see could be done which required taking out almost all of the internal walls and repositioning them with lots of steel going into ceilings, et cetera leads to lots of cost - more than we have, and more than this house is worth.

                  So we doddled off to see other another place quite a bit further out of London - if it makes any sense to anybody we presently live close to the border of zone 2 in zone 3, where as this house was on the outside of zone 4.

                  It is owned by a family with several grown up children and one who is probably now a teenager who has cerebral palsy. We did not meet him because he was in residential care.

                  The house had a 1st floor bedroom with hoists, et cetera and then a lift to take him down to an extension they had had built quite a long time ago (10 years plus?) , which contained both the garage and a wet room.

                  The entranceway is completely flat, although quite narrow and there are some adaptations with ramps and railings which look like they were put in quite a long time ago.

                  So far so good!

                  However, discussing it afterwards we know the "child" has a full-time carer and is moved around in a push wheelchair, not a power chair. Also to get from the lift on the ground floor to the wet room you have to go through two doors, both of which are only 800 cm wide and none of which have any scratches which you would expect to see from wheelchair being pushed through an opening and not quite making it.

                  So we guess that this arrangement has not been used very much and may only be suitable for a push wheelchair, so we need to go back and have a proper look once we work out exactly what size of lift me being a powered wheelchair would predicate.

                  My occupational therapist has given me some guidance from one of the local housing associations (some 40 pages with diagrams) , but the key dimensions it seems to me are front door opening at least 900 cm wide and corridors at least 1.2m wide with internal doors recommended clear opening 900mm (a minimum clear opening of 840mm is only acceptable if unavoidable),

                  The minimum internal lift Dimension required is 790mm wide, 1120mm long.

                  Does anyone know if this is right for a powered wheelchair?

                  And I will go with our builder to see what he thinks about the state of the place because it is otherwise a bit tatty and may need the roof re-tiling and certainly needs a completely decorate - both of which of course we have done to the place we are living in at the moment :-(

                  Work in progress!

                  Warmly
                  Last edited by nunhead_man; 30 June 2019, 12:09. 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


                    #10
                    Voted Andy,

                    Good luck with everything.

                    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


                      #11
                      Originally posted by nunhead_man View Post

                      The minimum internal lift Dimension required is 790mm wide, 1120mm long.

                      Does anyone know if this is right for a powered wheelchair?
                      Hopefully someone with firsthand experience will reply but to me...

                      The 790mm width is > enough Andy but the 1120mm length seems a bith tight to me. My XTR2 chair is 1160mm without me in it and the front of my feet protruding over the footrests adds to that. And the chair is longer if in tilt to any degree.

                      I see the Salsa Mini is 1100mm but add in your feet and any tilt and you'd probably exceed 1160mm?

                      Originally posted by nunhead_man View Post
                      Umm, no, not one of those, cool looking though it is

                      Head trackers are generally a lot less precise than eye trackers = much frustration and the trackers must be compatible with software which replicates a mouse, that one isn't. The Tobii has native Windows 10 eye control but also works with a few free open source programs.

                      Originally posted by nunhead_man View Post

                      Some of the reviews suggest you need to be quite close to the screen for this to work at the moment as I stand at my computer, I am probably close enough I guess - what distance are you from your screen Ellie?
                      Usually I'm about 60cm away but sometimes about 75cm and it works perfectly. Proper calibration is very important to ensure precision.

                      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


                        #12
                        Hi Ellie

                        Originally posted by Ellie View Post
                        Hopefully someone with firsthand experience will reply but to me...

                        The 790mm width is > enough Andy but the 1120mm length seems a bith tight to me. My XTR2 chair is 1160mm without me in it and the front of my feet protruding over the footrests adds to that. And the chair is longer if in tilt to any degree..
                        And thanks yet again - and - so 790 mm is wide enough, but 1120 mm is too short.

                        So you are saying if the chair is tilted or you have long legs, which of course is no problem your sitting in the lift platform, say on the 1st floor, but the hole in the floor is only the size of this platform, so if your legs overhang the edge no go!

                        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


                          #13
                          Yep, I think 1120mm is too short.

                          The lifts have half-doors so it wouldn't close, hence I think you'd need to allow for a long based lift, for a powerchair, rather than the standard length for a standard chair.

                          If you look at the length of a particular chair, bear in mind the length is measured from the footrest to the rear wheel or back of the backrest whilst it's in an upright position and your own comfortable sitting position is likely to have some degree of recline, especially if progression occurs - an extra few mm there and a headrest may also add a few mm, depending on its bulk and/or bracket.

                          I'd suggest contacting a couple of companies and having a preliminary chat about measurements. Wessex Lifts & Terry Lifts have been used by Forum members in the past, I know nothing about either. I'd hate you to discover too late that the door didn't close on your expensive purchase!!

                          Love Ellie.
                          Last edited by Ellie; 2 July 2019, 11:03.
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            Good morning

                            Okay – excitement over.

                            The house we were looking would require me to run a substantial building project to get it into shape.

                            Also, I may be two or three years away from needing a hoist to get me out of bed, et cetera so I do not really want to live with that stuff for that length of time.

                            But looking at it has got me sorted out in my head as to the precise house layout, that I need at my stage of my development of the disease - and this layout might help others in a similar situation?

                            We want to buy a house that is already the right shape for me to live with if I have to move into a wheelchair

                            * level ground floor access or easy to ramp
                            * corridor widths 1.2m
                            * rooms with 1500 cm turning circle for wheelchair
                            * ability to widen door widths to 900cm if needed

                            so that "all" we have to do when needful is convert the garage or build an extension to make a wet room and move my sleeping quarters from the first floor to a ground floor reception room.

                            The house also needs another reception room for use as a living room plus kitchen that is big enough to swing a cat - or a motorised wheelchair.

                            A small garden and location within a community - e.g. no more than five minutes walk to the nearest shop with local doctor, dentist, vet, railway station, are also on our agenda.

                            So wish us luck winning a big prize in the lottery!

                            Or finding some way of moving to Sheffield or a.n other!!

                            Joking apart there are houses around the corner from us that might suit but we would need £100,000 to £150,000 more than we have to buy one.

                            Warmly
                            Last edited by nunhead_man; 5 July 2019, 08:50.
                            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


                              #15
                              Good luck with your house hunting Andy. Very good planning strategy. 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

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