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    Unexpected consequences

    My generally weakened hands can now only just operate my touch screens the exception being keyboards but cold, involuntary twitching and thick fingers mean longer time spent. Which bit has caught you out!? ๐Ÿ˜x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

    #2
    Is this a cryptic clue in a crossword?๐Ÿ˜„

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      #3
      When Stephen used to attempt to use his phone he used to try and take photos. Unfortunately his touch just didn't seem to register with the screen. So I'd stand there with a stupid grin waiting and waiting. Finally feeling totally embarrassed, if outside, I'd get into a paddy, and low and behold the camera would work and you can imagine the pictures ๐Ÿ˜  far from flattering. ๐Ÿ˜ฉ

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        #4
        Hi Matthew. Iโ€™m sorry to hear that . I do you manage holding a cup?

        Richard
        Richard

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          #5
          Cup holding is a real problem and the cup can be hot but not necessarily the contents. So i pour coffee into a cold cup so he can hold it. Then the bigger the handle it helps and I'm thinking two handles might be better? Picking the cup up and putting it down and I hold my breath.

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            #6
            We used straws of varying length depending on where Ann was sitting. SALT said we should use the ones with valves in but Ann could not get on with them.
            Last edited by Bowler; 22 May 2021, 08:41.

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              #7
              I've got straws sitting on the table in front of him. He's not using one of those. ๐Ÿค should just keep my mouth shut.

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                #8
                I can hold it just can't do anything with it ๐Ÿ˜‚x
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                  #9
                  That sums it up ๐Ÿ˜„๐Ÿ˜†

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                    #10
                    Same here Mathew, I fumble with the phone and once sent the word ass by mistake with the palm of my left hand and the twitchy finger of my right
                    Diagnosed 2nd Jan 2020
                    Both arms/shoulders affected, left worse than right.
                    Progressive Muscular Atrophy suspected

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                      #11
                      The things i find most frustrating are public toilets. It takes me a long time to pull trousers down, and even longer to pull up - and that is just for the elasticated ones. Don't get me onto buttons, hooks, and ties! Lol.

                      For the rest, i am most upset about not being able to wear my usual variety of hair bands, chains, pendants, earrings, bracelets. That sounds like I am one of those toffs with pots of money, but it has always been about standing out from the crowd for something other than being ugly and overweight!

                      PS: I no longer think of myself as either ugly or fat, but i did until i was 35, and now, the flamboyant hair style and jewellery (mostly from charity shops) makes me who i became. What next i wonder? I am now 66 and need help with my hair and jewellery (sometimes)
                      Mum died with MND in 1979 โ€“ I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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                        #12
                        Iโ€™m the same with pants Evelyn, ditto gold necklaces and diamond earrings all of which I canโ€™t put on or in. Iโ€™ve got dress jewellery ie plastic colourful things that I could wear but use a nice fine colourful scarf around my neck that I can do instead x
                        Last edited by Lynne K; 22 May 2021, 17:08.
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

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                          #13
                          Hi everyone

                          I was going to ask has anyone come up with a way of pulling pants and trousers up. My poor husband has to call me to help him. Public toilets - what am I supposed to do go in with him?

                          I don't think there's anything wrong with wanting to wear jewellery. Just a thought but what about asking a friend to sew beads to a t-shirt. Just to tart them up. Like Lynne said scarves around the neck or hair.

                          I'm 66 I just think hey world this is me.

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                            #14
                            Hi
                            Some of us ladies like to accessorise and its impossible at times.I canโ€™t do up a neck chain and Steve my hubby has arthritis in fingers so fat fingers ..he struggles to do up necklaces for me.Then there is make up..some days the eye liner pencil takes off in all directions when hand wonโ€™t come operate.
                            Evelyn MW.....Going to the loo and sorting clothing is challenging.I do have use in my hands though they are getting weaker.Getting trousers etc up and down is getting harder and slower.Luckily Steve is quite happy to help although I try and sort myself before calling on him.We often can be seen going into disabled loos as a pair these days..team work is often required๐Ÿ˜‚
                            Off out this evening for pub snack with friends and requested a table with disabled loo within sight.I had better not have too much wine! Making memories. I enjoy it while I can as who knows what MND will take off me next.But today has been a good day.

                            I learn a lot by those who share on this forum about how people develop strategies to cope or reach acceptance when they need support in so many areas.(Not always the case and some days are better than others ).

                            Denise..I can imagine the photos with you in a rage๐Ÿ˜‚
                            Best wishes
                            Mary



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                              #15
                              Imagine the same Mary, try hard by myself to do things independently and only only call for help if Iโ€™ve tried loads often times and not success, frustration. So either call verbally or send Steve a WhatsApp message. Lynne x
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                              I'm staying positive and taking each day as it comes.

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