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    Back from hols

    Good morning

    Just come back from a great holiday and back to the daily grind.

    Cheered up a lot by coming back here and great to see what's going on and seeing I'm not alone.

    In particular I seem to be getting some damage to my right hand to add to the damage I have to my left and dominant side. I now have fasciculations in all four limbs and occasionally it seems in my left shoulder up to my left cheek.

    I still have some strength in my left hand but my fingers are like a bunch of bananas so I can lift and push but not grip. My right hand is now seemingly going the same way although I still have a pinch grip on the right.

    I have been talking to my local REMAP lot (https://www.remap.org.uk) about trying to get some sort of glove or other aid that I can put on my left hand to help me use it but the bloke I see has just become the father of twins and has disappeared so blew out our appointment yesterday - and it looks like I may need something for my right hand as well.

    I use a palm strap for using cutlery but this does not help, when, for example, I want to use a pair of pliers.

    My REMAP bloke was working on a glove which kind of stuck my fingers together but the prototype was not quite right and so there was I hope he was coming yesterday with a solution and……

    Does anyone have any solutions for assisting hand function?

    The other thing we been thinking about is housing.

    We downsized about five years ago, a year before I was diagnosed, and would not have purchased this house if we knew then what we know now - especially if I end up needing a wheelchair.

    The house we own is on three floors and even if we could widen the doors the landings are not deep enough for a wheelchair turning circle and the way the house is set out is not sensible for putting in a lift. And we would need to do this as the toilet is on the first floor and there is no sensible place for the toilet on the ground floor other than a free standing chemical one of course.

    It seems where we are in South London where we have all our friends and contacts that houses converted for people with disabilities are like hens teeth i.e. rare and the more modern disabled converted or built properties are in the housing association sector.

    However it's not easy to move from the private sector to the housing association sector it seems and may not even be considered at all until I'm clearly not suited to living in the current place which of course is not a place where this long-term planning person here fancies being in.

    I suppose we could move somewhere else where housing is cheaper and use the money we make, if needed, to convert a place for wheelchair purposes but thought of giving up our local support structures plus the time this would take seems daunting.

    Has anyone else faced this issue and found the solution to it?

    Best to all

    Andy
    Last edited by nunhead_man; 13 February 2019, 11:18. Reason: update
    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
    Hi Andy. Your idea about buying in a cheaper area to leave money for converting is a good one. That's so long as you can go to an area that you'd be happy with. How about looking for a decent sized two bedroomed bungalow? The more bedrooms, the more potential conversion costs. Two seems to be a good compromise. You may even be lucky in finding a bungalow that already has disabled access etc. Widening doors and converting a bathroom to a wet-room would then be most of what's left to do. 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


      #3
      Hi Andy,

      Re pliers etc. IDK if something like pipe insulation, cut to length, and wrapped around the handles would enable a better grip for you? Or there is "Easy Grip Tubing" - purposely to enhance grip, available in various widths and lengths but, as it's an aid of course it isn't cheap!!

      It is primarily for cutlery but has many other uses. (Do you have a key grip?)

      Good luck with REMAP.

      I recently moved house to make life easier, not only for me, but for the whole family. We basically swapped our 4-bed townhouse for a bigger, more suitable house further from town. I have a downstairs bedroom and wet room - happy days. None of us regret moving.

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

      Comment


        #4
        Hi Lynne

        Thank you for your response

        Originally posted by Lynne K View Post
        Your idea about buying in a cheaper area to leave money for converting is a good one.
        I'm sure it is a good one but we don't really want to move too far away from where we are because that's where all our connections are.

        I am mindful of the mistake my mother made when she retired and moved away to the south coast where she knew no one and was no longer in work which of course is often a significant contributor to the list of people that you know.

        As to my hand thing which was the other item it seems that keeping my hand warm has a significant effect on its function - at least it's better this afternoon now it's warm than it was this morning when it was cold
        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


          #5
          Hello Andy, New here so please bear with
          We moved from private to social housing well before hubby's diagnosis. He was losing mobility and constantly falling down the stairs.
          After a particularly bad fall when he broke his sacrum we applied for social housing. We'd tried to buy a bungalow for years but here in the Lake District we were always up against wealthy cash buyers. We were allocated a lovely little bungalow with a wet room with a garden and stunning views. We were assessed as having a short fall of £155k to buy suitable housing.
          Happy days. We had a great housing officer plus an OT who said our old house could never be adapted to be suitable.
          Good luck.

          Comment


            #6
            Hi Andy,
            Housing is a tricky one. We downsized to a ground floor apartment before I was diagnosed because in our family home there were too many steps to get in and out. I had some bad falls and I really didn't want to sleep downstairs, psychologically. I wasnt diagnosed then with MND but I think I knew what I had was not going to get better. Our apartment has no steps and level access in so I feel safe on my own for a short while in my electric chair (!) as I know I could get out on my own, If I had to.

            We had a bathroom converted to a wet room and our youngest who lives with us has a tiny en suite shower.
            It was emotional leaving what had been our family home for 30 years but I am really glad we didn't wait until it was an emergency. It's a personal choice but it's made life easier for all of us.
            Good Luck with your difficult decisions, Andy
            Love Debbie

            Comment


              #7
              Hi Andy,

              I can understand why you don't want to move far away from your friends. If adapting your current home isn't practical (e.g by extending your property or adapting a room on the ground floor, in order to provide you with a bedroom and wetroom), it might be a more feasible option to move to a ground floor apartment (like Debbie and her family did). Hopefully you would only need to have the bathroom converted to a wetroom. Also, downsizing to an apartment might make it easier to find an affordable wheelchair friendly property, without having to move outside your preferred location.

              It's never easy to find a suitable property to move to, but at least these days we can do property searches using websites such as a 'Rightmove' - much quicker and easier than in the 'old days' when we had to traipse round the estate agents and wait for property details to be posted to us!

              If you haven't seen it already, you may wish to read the information on the MNDA's website about home adaptations and the Disabiled Facilities Grant:-

              http://https://www.mndassociation.org/about-mnd/what-help-is-available/having-your-needs-assessed/

              http://https://www.mndassociation.org/wp-content/uploads/2015/07/10c-disabled-facilities-grants.pdf


              Good luck with everything.
              Best wishes,
              Kayleigh
              Last edited by Kayleigh; 12 February 2019, 20:55.

              Comment


                #8
                Hi Andy,

                Perhaps something like this, on the Active Hands website, would help you to grip items such as pliers?:-

                http://https://www.activehands.com/product/saebo-stretch/

                Their online 'shop' also includes other gripping aids:-

                https://www.activehands.com/shop/

                Happy browsing/shopping

                Kayleigh
                Last edited by Kayleigh; 12 February 2019, 22:48.

                Comment


                  #9
                  Hi there

                  Originally posted by Music man's wife View Post
                  .................... We were assessed as having a short fall of £155k to buy suitable housing.
                  Interesting particularly to note about the mechanism. I suspect the economics a rather different here in London but I will have a poke around to see what there is available by way of bungalows with some disabled amendments it further out from where we are in London

                  Best

                  Andy
                  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
                    Hi Debbie

                    Originally posted by Deb View Post
                    Housing is a tricky one. ..... I had some bad falls and I really didn't want to sleep downstairs,
                    Thank you - our issue is that when we moved five years ago from our family home we thought the place here would do us for the next 20 years until we ended up in care - we had not thought it might be so soon.

                    I'm still on my legs at the moment but I guess when I start finding this place difficult that'll be the time to think about really doing something about this.

                    The trouble is I have no idea how this disease is going to progress to me but then this kind of planning is something I'm used to in that in the world in which I work there are often "known unknowns" and "unknown unknowns"

                    Best

                    Andy
                    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


                      #11
                      Hi Kayleigh

                      Originally posted by Kayleigh View Post
                      Thank you - catching up with you in the Equipment part of the forum

                      Best

                      Andy
                      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


                        #12
                        Hi Ellie

                        Originally posted by Ellie View Post
                        Re pliers etc. IDK if something like pipe insulation, cut to length, and wrapped around the handles
                        I'm afraid my left hand is rather more useless than that in that I can actuate things with a strap around my palm but my fingers are useless.

                        And my right hand still has a pinch grip - so not too bad at the moment

                        I think the gloves that I've seen in the equipment part of the forum might be interesting to try.

                        And thank you about your property move - that sounds great

                        Best

                        Andy
                        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
                          http://education.abc.net.au/home#!/m...nger-orthosis-
                          Last edited by Terry; 13 February 2019, 16:25.
                          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


                            #14
                            Hi Terry

                            Fascinating....

                            However I'm afraid as far as I know all the nerves that actuate my fingers are dead never to return.

                            Best

                            Andy
                            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
                              Hi Andy,

                              I was going to write a bit more about hands but just posted that so as not to lose it.

                              I have the opposite problem, in that I have grip but it is hard to open my fingers out fully.

                              Definitely worse if cold, tired or under pressure.

                              I have seen gloves that do assist closing but I think that they operated from nerves further up the forarm so little use to us.

                              Hope you had a nice holiday and please update us on any thing provided.

                              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

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