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    Activities for people with MND?

    I suppose this is a trivial request compared to what some of you are going through, but what activities have you found that you can with MND.
    My wife and I used to cycle, walk and swim, something that I cannot do anymore.
    Because my arms are useless, my hands have limited use and my legs are wobbly, I am limited as to what we can do as a couple. I end up "tagging" along with her when she visits her dad to clean his house once a week, or getting pushed around a park in my wheelchair. Otherwise I/we sit and watch her TV programmes during the day and evening. It is soul destroying when she plays games for hours on her ipad at the same time as hogging the remote.
    I would like to suggest to her that we do something together (god forbid), but I need ideas.
    We tried jigsaws which lasted about a week due to the difficulty for me picking up pieces, as I would often drag the pieces rather than lift and place.
    Ideas welcome, thank you.
    Diagnosed 2nd Jan 2020
    Both arms/shoulders affected, left worse than right.
    Progressive Muscular Atrophy suspected

    #2
    I will be interested in any suggestions for this. Stephens hands are hopeless though he manages to use the mouse. I could do with him trying to use his fingers to exercise them. We have loads of board games but I don't think he'd be interested. That's a thing in itself that I want to suggest things but I don't want him to try and fail and then add something else to the list of things he can't do. In some respects he's happy not trying to do anything apart from smoke and sit in the sun. Oh and come in and check the sport.

    I have tried him on various quiz questions but he has no answers but he's physically and mentally impaired with this disease which in itself worries me in that he's not getting any help with this and im sure having something to concentrate on would be beneficial.

    Comment


      #3
      Hi , It’s so hard to keep occupied if you can’t walk or hands and arms are barely functioning.I keep thinking about things to do for myself.
      like many I resort to reading, Tv,talking to friends, listening to music.I go on you tube .Outdoors I can’t garden but love sitting out enjoying nature.I know many do and try crafts , drawing ,painting etc.Photography in garden or when outdoors anywhere.My granddaughter wants to interview me about my life and record it.
      My hubby and I have a game of rummikub some days.Some days of course it can be sad as I think I wish I could do something for others .Lockdown restrictions don’t help.
      We go to garden centres and I sit out while my hubby pots plants we bought As from 29th March friends are hoping to come and sit in our garden ,which will be lovely.
      As a Catholic I engage in on line masses, you tube Christian talks .
      Every other day we try and go out for a wheelchair push and as I have lived in this village for 45 years we always meet people we know to chat to so that’s pleasurable.
      I have googled for ideas .Talking books ,and ideas on trying a new craft etc.
      I can’t spend today counting the things I can’t do.So for now it’s time to get my lippy on and be determined to enjoy the day the best way aI can.Looking forward to other members ideas on occupying our days.Best wishes.Mary

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        #4
        Ideas are slim on the ground indeed. I bought an Oculus VR headset last year, the problem is most games require arm actions or standing up. I am entertained when my daughter and wife play Beat Sabre competitively however.
        I am considering a Playstation 4, where it can be done sat down with minimal hand movements required. Has anyone tried this with MND?
        Diagnosed 2nd Jan 2020
        Both arms/shoulders affected, left worse than right.
        Progressive Muscular Atrophy suspected

        Comment


          #5
          I have recently installed a gaming handset on my pc which I found very easy to use. 👍x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

          Comment


            #6
            Originally posted by matthew55 View Post
            I have recently installed a gaming handset on my pc which I found very easy to use. 👍x
            Hi Matthew, I would be interested to know more about the PC handset you have installed, what games can be accessed, name of the handset, price ect please?
            Diagnosed 2nd Jan 2020
            Both arms/shoulders affected, left worse than right.
            Progressive Muscular Atrophy suspected

            Comment


              #7
              It's just like an Xbox controller and it works for any game. Shop around and you may get one for £20. 😁x
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

              Comment


                #8
                Originally posted by matthew55 View Post
                It's just like an Xbox controller and it works for any game. Shop around and you may get one for £20. 😁x
                Thank you, but could you expand please? Does it replace the mouse? How and what games can be accessed? Thanks, Dave
                Diagnosed 2nd Jan 2020
                Both arms/shoulders affected, left worse than right.
                Progressive Muscular Atrophy suspected

                Comment


                  #9
                  Beemer We had (have) the same issue, Dave - Spoiler Alert: MND can seriously interfere with social activities 😂

                  It takes a trojan effort to get out and it's so much easier to become a hermit and, with so many restrictions these days, we are all inclined to stay in.

                  We used to go to the cinema or the theatre (no need to chat!!) and oudoors to gardens or pier walks - all very genteel activities - but we also managed to go on accessible forest walks. I know you enjoyed your trike experience, so maybe a Tramper hire, or an all terrain style wheelchair, in a forest park could be a regular activity, albeit hard to be spontaneous with the need to prebook.

                  As an aside; are you waiting for a powerchair? The independence it provides is invaluable, no more being pushed by someone.

                  I know these sound lame but maybe you could both online Scrabble, card games, chess etc., or pay the same games as your wife does, together or independently, and try to compete. Hopefully you can find a games console you can use.

                  We choose a boxset to watch together and I excel at supervising his gardening efforts, other than that, there is not much joint activity in lockdown 😥 I have a tiny role in helping him run his business so that, as well as the kids and current affairs, give us chat fodder.

                  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


                    #10
                    I've taken to old 50's films on Talking Pictures and Sony Movies. Seen most of them several times!

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                      #11
                      Hi Dave,

                      I totally agree with the spoiler alert of MND interfering with our social life🤣 and a national lockdown doesn't help either. As Ellie says it takes a big effort to go out and when there is nowhere to go it is hard to find the motivation. By the time I'm showered, dressed and looking gorgeous for the day ( ok ok vaguely presentable !) I need a rest !

                      I'm looking forward to some warmer weather and then hopefully I'll be raring to go! I think its true that the more we stay in the less we want to go out but I'm looking forward to sitting in the sunshine with the family.

                      I do enjoy reading and I love listening to music and watching music on you tube. We do choose films together.. we spend more time trying to agree on the film than watching it! Fortunately we both enjoy watching sport, especially football. I do online quizzes with friends and family.

                      Love Debbie x

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                        #12
                        Dave it doesn't take over the mouse and the game depends on what you have downloaded previously. 😁x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                        Comment


                          #13
                          Thanks, guys n gals some ideas to consider. I love watching Youtube, but she don't, she likes the old TV programmes like The Professionals, I don't. She often goes litter picking for hours (well thats what she tells me), and I don't want to stop her doing the litter picking as she is part of a litter picking FB group.
                          We could try cards though, but hopefully the better weather and lifted restrictions may mean we can get out more.
                          I have only just had the wheelchair supplied and have been out about twice to date. I start by pushing it and finish the walk sat in it though.
                          I feel self conscious sat in the wheelchair, a kind of phony, as I can walk but not very well or fast. The powerchair may be a few weeks or months away depending on my progression however.
                          We used to play scrabble when we had the motorhome and it was piddling it down outside, so maybe an electronic version on a games machine.
                          Diagnosed 2nd Jan 2020
                          Both arms/shoulders affected, left worse than right.
                          Progressive Muscular Atrophy suspected

                          Comment


                            #14
                            Originally posted by matthew55 View Post
                            Dave it doesn't take over the mouse and the game depends on what you have downloaded previously. 😁x
                            Cheers Matthew, I will have a look online.
                            Diagnosed 2nd Jan 2020
                            Both arms/shoulders affected, left worse than right.
                            Progressive Muscular Atrophy suspected

                            Comment


                              #15
                              I have spent many happy hours, days and even weeks compiling a life story book with pictures. I want to leave memories for my children so I scrounged old photos from mum of me and my siblings which I scanned to add to the book. I am now working on my next photo book which is a collection of photos and stories about my travels post diagnosis.

                              Following a video presentation from another MND warrior I have downloaded a few apps that generate computer designed art from photos. This is great fun and is addictive with the option to impersonate the genres of art using any photos. When we lose a function it is important to avoid a defeatist attitude because the power of the mind allows us to adapt and sometimes we have to think outside the box. I hope this thread started by Bowler aka Dave generates lots of ideas.
                              I’m going to do this even if it kills me!

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