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    #16
    Hi Shaun, pre lockdown I was tucking hand warmers in my golf gloves. You've given me some hope that I will still be able to play come the warmer weather.

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      #17
      Hello kenny,
      limited hand grip , thumb only moves in one direction, right shoulder wasting, foot drop, and knees giving way , but on a positive i can grip a club, it’s about the only thing I can grip, have had to adjust grip a bit due to thumb and backswing action doesn’t effect my shoulder, swing is a lot slower, left arm doing the work, so happy to drive 170-180, but I’m a lot straighter, biggest problem for me is teeing up, too fiddly , no handicap now, just a casual hacker
      s
      As long as there’s golf and beer I’m happy

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        #18
        Kenny, join the club. You now realise that Emotional Liability is an unfortunate bedfellow of MND. I remember the first time that it happened to me. My daughter had said something that she wanted support over but I started laughing. I didn’t feel amused. It was uncontrollable. I had to explain to my daughter as soon as I could get the words out and more fully later.

        If I watch anything sad or heart warming I can easily shed a tear or two. On occasion the tears can persist after the moment has passed. I can laugh repeatedly over the smallest thing and ditto when I have something to deal with (that ordinarily I’d deal with confidently) it can lead to me being ‘a cry baby.’

        Most of my family know about this so don’t take offence. Our friends could do with forewarning, maybe by my husband.

        It seems that most of us are cry babies but I’d be very angry with anyone saying this to me at the time. Well I’d feel the anger but couldn’t do much about it seeing as I can’t get enough words out to stand my ground. Something like this was said to me by my husband a few months ago which was almost unforgivable but I explained again to him as soon as I was able to and since this he’s been more understanding. Some people are slow on the emotional understanding scale, but it’s good that most can get there eventually.
        Lynne
        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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          #19
          Unfortunately I used to have times when I laugh inappropriately like when I dropped things like a hair band and then I would fall over and break or sprain things. Fortunately and touch wood I haven’t fallen for a while probably because I can not move. However I do cry a lot and yesterday someone made me a lovely cake and I could not stop crying, but what was harder was the actual crying and breathing it felt so hard, difficult and different.

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            #20
            Yea Jacquij it is very hard to breath at the same time as crying or to a lesser extent laughing. Lynne
            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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              #21
              Originally posted by Jacquij View Post
              Unfortunately I used to have times when I laugh inappropriately like when I dropped things like a hair band and then I would fall over and break or sprain things. Fortunately and touch wood I haven’t fallen for a while probably because I can not move. However I do cry a lot and yesterday someone made me a lovely cake and I could not stop crying, but what was harder was the actual crying and breathing it felt so hard, difficult and different.
              Yes, Jacquij I'd forgotten about the laughing and breathing. This can be quite frightening because others can't comprehend that you're struggling to get your breath while laughing.
              Each day is made easier with a bit of humour.

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                #22
                Kenny it’s worth dropping into conversations with friends and family that amongst the many things MND does it also makes people extremely emotional, both happy and sad and not just regarding their own personal circumstances but things they are seeing or doing. Perhaps comment about the well known sportsmen and mention you are also similar.

                You are not alone and most of us are there with you.

                Keep smiling

                Richard
                Richard

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                  #23
                  Loving the conversation about golf. As a former golfer I had to give up when I fell over every time I struck the ball. At the time I could get up but it was embarrassing on the first tee. Speaking of emotional lability reminded me of when I upstaged the widow at my uncle’s funeral.
                  I’m going to do this even if it kills me!

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                    #24
                    As they say in these parts...

                    I'll give you something to cry about!!

                    https://www.youtube.com/watch?v=1BxFlmb6S6E
                    Copyright Graham

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                      #25
                      I'm lucky as I was rubbish at golf before MND. 😄x
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #26
                        Thanks Graham for my laugh of the day. So many good actors in that sketch.
                        I’m going to do this even if it kills me!

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                          #27
                          Originally posted by matthew55 View Post
                          I'm lucky as I was rubbish at golf before MND. 😄x
                          Doesn’t stop me Matthew 😂😂
                          As long as there’s golf and beer I’m happy

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                            #28
                            Emotions are a complex reaction. When I was told that I had MND, I just sat there and accepted it, until I noticed how bad it had affected my wife, who cried. That upset me more, to see her upset.
                            Months later I stood up and gave an eulogy at my fathers funeral, perfectly fine until I read out a sentence from my sister who was quarantined in America.
                            I accept what I have and the consequences, it is harder to see other people who are unhappy about it though.
                            Diagnosed 2nd Jan 2020
                            Both arms/shoulders affected, left worse than right.
                            Progressive Muscular Atrophy suspected

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                              #29
                              coming up two years ago when my husband was told to "Expect a diagnosis of MND" I thought he hadn't heard the words Motor Neurons, 2 days later we went on holiday and that's when he did acknowledge what had been said........for god sake I didn't stop crying from that point everything just erupted we had been keeping it in for each other, Dignitas also was mentioned,

                              Never ever had a holiday where I didn't read one single solitary word - I usually get through a few books - I just sat there numb whereas my husband did seem ok

                              So many months later and still no diagnosis I have cursed that consultant bloke so many times - was he right to predict it ? caused lots of grief or should he have waited until it was diagnosed? - the Jury is out on that for me


                              Husband Albert diagnosed PMA Feb 21

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                                #30
                                You'd think that by now they would at least have come up with a diagnostic process for MND, if not a treatment.
                                Each day is made easier with a bit of humour.

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