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Thread: update...

  1. #1
    Forum Member nunhead_man's Avatar
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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. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  2. #2
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    Already voted.

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

    Doug

  5. #5
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    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

  6. #6
    Forum Member Kayleigh's Avatar
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    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

  7. #7
    Forum Member nunhead_man's Avatar
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    Good morning Doug

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

    Quote 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. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  8. #8
    Forum Member nunhead_man's Avatar
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    Hi Ellie

    Quote 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

    Quote 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. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  9. #9
    Forum Member nunhead_man's Avatar
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    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; 30th June 2019 at 12:09. Reason: more info
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  10. #10
    Forum Member Terry's Avatar
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    Voted Andy,

    Good luck with everything.

    Love Terry

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