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    #31
    Mindfulness

    Hi Sarah

    Mindfulness can definitely be helpful in coping with MND. For one thing, it’s a DIY therapy you can use anytime. Start by concentrating on your breathing.

    But its great merit is that, as a philosophy, as a technique, it’s the polar opposite of the demon that stalks all MND affected minds: dwelling on “what might have been”. Mindfulness focusses on the present – what IS.

    Within clinical psychology, there are a number of so-called talking therapies that have been shown to be helpful to people who are faced with a serious life changing or terminal illness. The common theme is that of acceptance. Put very crudely – we can’t do anything to change the situation, so don’t waste time worrying about it, concentrate on what you can do, what you can control.

    A diagnosis of MND comes as an overwhelming shock, and a common reaction is: How will I cope, I can’t.

    Well, actually, we can. Unbeknown to us, we’ve been practicing for it all our lives. Unless you’re one of those very rare and fortunate people who, at the age of ten, decided on a complete life plan and was able to tick off all the stages without deviation, you will have been responding to and coping with changing circumstances, new challenges, every day of your life. And, if you look back – this is the only time you should – you’ll probably see that you’ve been quite good at it. And you’ve recently been successful, despite MND. For example, over your pension.

    The trick is to focus on the present and the very immediate future. Concentrate on small achievable goals and reward yourself when you achieve them.

    It’s an oft-quoted cliché: but remember that today was the tomorrow we feared yesterday.

    Chin up – literally!

    Hugs

    Doug

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      #32
      Hi Doug

      That was so well said. Thanks for sharing that knowledge.

      CC xox

      Comment


        #33
        Thanks Doug - very wise and helpful words. I’ve always been pretty good at accepting change and getting on with things and would say I was also for the first few months into the MND. It’s only recently I’ve been hit badly by profound sadness at things I’ll never be able to do again. I’ll keep working on acceptance though - as you say, what other choice do we have?

        Thank you.

        Sarah xx

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          #34
          Thank you Doug for your wise words.
          Sarah! I am not on Instagram myself but I had a look at your pictures. Wow! You have a lovely home, wife and pets. Thanks for sharing.
          Love Sheila x x

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            #35
            Hi Sarah,

            Hope the pump behaved last night and you slept well, or slept OKish at least?

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

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              #36
              Hi Ellie

              I was just thinking of you, funnily enough- wondering if you’re watching the rugby?!

              Yes all went smoothly last night & I slept really well too so definitely think this is the way forward. Big weight off!

              Thanks for asking. And I would wish Ireland luck today, but... ;-)

              Sarah xx

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                #37
                Oh I don't think you've much to fear in the rugby today Sarah - I suspect Ireland will be trounced today !!!

                Glad last night was better, the pump is very handy indeed.

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

                Comment


                  #38
                  Well, who'd have thunk !!! Different teams to what we saw last week.

                  You can cheer for England now - hey, not fair, you get 2 chances
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                  Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #39
                    Oh dear, not our best performance! But we don’t mind losing to Ireland too much. :-)

                    Na. I’m a Wales supporter through and through - & not just because Sue would probably divorce me if I wasn’t! :-)

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                      #40
                      I was diagnosed in September 2018 after a most horrific journey which began in April 2017 with a nasty fall, unbeknown to me there were 18 more falls to come. I am still able to walk with my frame, albeit very slowly, also speech is so slow, & I'm still able to eat, & my husband takes me out as much as possible. Having been a writer all my life I thankfully wrote so much before MND took my ability, so now I type on my computer--again very slow but I'm not prepared to give in. My entire journey to date is recorded in files, both digital & paper copies, I feel maybe my journal might help someone in the future. My philosophy in dealing with this obnoxious abhorrent disease is.............as hard as it is I must forget about all the things I CANNOT do anymore, & concentrate on the things I CAN still do. Also my strategic plan is massively helped with laughter, my husband & daughter constantly make me laugh, I usually end up crying the tears of laughter!! Therefore, with my positive mindset & laughter I truly believe I have the best medicine. MND WILL get me in the end, as it always does, but until then..........) I'll smile & laugh every day!!

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                        #41
                        What a fabulously positive and inspiring attitude!

                        Doug

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                          #42
                          Yes indeed, a wonderful attitude. And you’re dead right about appreciating the things we can still do. I had an appointment at the MND clinic today and was told, given the speed of my progression, my likely prognosis is 1 to 2 years. It was hard to hear, even though I of course know the statistics. In a funny kind of way tho it has galvanised me into stopping feeling sorry for myself (I have become depressed and insular) and start appreciating each and every day. I’ve withdrawn from my wife and she deserves SO much better so I’m now determined to make our remaining time as joyful as possible. Besides, my respiratory levels are still completely normal so I could have years left in me yet!

                          Comment


                            #43
                            I wish I could feel more positive, spring and summer coming and I feel nothing really to look forward too. I must really try to snap out of it.
                            Love to all,

                            Comment


                              #44
                              Hi Sarah,

                              Even though we know we've a terminal illness, it is still utterly shocking to hear healthcare professionals talk about a prognosis and it sure does focus the mind !!

                              Originally posted by SarahWP View Post
                              my respiratory levels are still completely normal so I could have years left in me yet!
                              That is absolutely spot on, respiratory function is still the most important predictor of longevity in ALS, not how fast their limbs are deteriorating - I've known people still walking or still eating full meals and talking who have died.

                              It may help to set yourself some realistic short-term goals too but it sounds as if you've got the right attitude.

                              Big cwtsh to you.

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

                              Comment


                                #45
                                Thanks Ellie, I’m hanging on to this belief desperately as hearing my prognosis so starkly knocked me back somewhat. Even if it’s true tho, all the more reason to enjoy every day as much as possible. Xx

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