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    Disinclined to exercise

    Good afternoon all,

    I've said elsewhere that I could cycle before I could walk and so arm onset MND has meant I can no longer cycle.

    Having moved to find somewhere that suited us for my probable future destination to living in a wheelchair I've lost the thing I would usually do both to move around and to make new friends – even so I've joined one or two cycling forums but feel pretty useless in them.

    I have done some serious walking in my life not the least some of the haut routes in the French Alps and the Cornish coastal path but it's always really been cycling for me.

    Obviously we've been through lockdown until we moved in May 2020 and now we are back there again – although not in this area yet.

    So it is either Covid or MND but I haven't been out much more than once a week since we've been here.

    I do really need to get out I think but I just can't seem to work up the energy or enthusiasm for doing so.

    So I thought I'd post this here just to see what people said and perhaps use it as a marker to get me moving

    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"

    #2
    Wouldn't the whole idea that lockdown could happen inspire you to get out? I know if the weather isn't so good that's enough to put you right off. I keep saying to my husband that if he doesn't shift himself he's going to end up like grandpa Simpson and the staring window. I feel that as my husband feet/legs are still working he should use them before they don't. I think it's easy to just decide to stay in but if there's a chance someone's going to make a horrible choice for you ie you are not allowed out then you might well wish you had. Get your coat and get out. Sometimes just someone saying morning can really lift your spirits. If you loved being out before then just don't dwell on what you can't do figure out what you can do.
    sorry I sound like your granny!
    Denise xxx
    when i can think of something profound i will update this.

    Comment


      #3
      Denise has sound advice Andy,

      I know the motivation issue is hard, my husband sits in his chair from 8am until 10.30pm........he has very limited leg use but can, with effort, get on his mobility scooter, I had to force him out yesterday - went for a Sunday lunch......after he'd had 3 pints of some real ale and the food he was happy I had !!

      Sue
      Husband Albert diagnosed PMA Feb 21

      Comment


        #4
        Hello Andy , if I remember correctly isn’t it Southampton you live now, are there are some nice coastal paths around The Solent towards Pompey and it’s not has hilly as Devon/Cornwall
        I know how you feel , I’ve been working from home since March and it’s easy just stay indoors, I make sure I go out once a day, even if it’s a walk to the local shops, it’s just not physical exercise but mental stimulus as well
        shaun
        As long as there’s golf and beer I’m happy

        Comment


          #5
          Hi Andy, it sounds as if you were a really good cyclist and your identity and friendships built around this? A lot of loss then having to give up a lot around this. This weather makes me feel like staying in, but I did go out in the rain today, and apart from anything else the physical activity raises your spirits I find. I think it's best not to agonise over it, but just go out every day for a week and see how it feels? Best of luck x
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

          Comment


            #6
            Good evening,

            Thank you all for your encouragement - We decided to stay in today because the weather was so bad but there was work inside the house that needed doing but may well start to go out for a walk, not the least since it looks like I might become a board member of the local workers co-op that runs a bookshop that will get me out a bit.

            And I do indeed live in Southampton and the reason why we made contact with the aforesaid bookshop is that we found a book of walks that lead from the various railway stations in the area which we will probably begin to explore providing we get some reasonable whether as my SO (significant other a.k.a. wife) does not much like walking in the rain.

            I'm interested that one of you says that you walk out to go to the shops but I've only been in one shop since March because of the Covid risk and we are being quite careful in that regard but then again I might try a second one!
            Warmly


            Andy

            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

            "Things turn out the best for people who make the best of the way things turn out"

            Comment


              #7
              My partner hasn't been out the flat since March and can no longer go for walks. I assist him walking between rooms and so I know when we eventually move we'll required a wheelchair.

              It's easy for me to say make the most of it before you no longer have the option to go a walk, but I also think you should listen to your body...everyone has days where they're just exhausted and need a good old movie day, especially as the weather turns and especially those with MND where fatigue can be next level.
              I try do arm exercises with him each day but if there's a day here and there that he can't be bothered I don't push it.

              Im not sure what stage you're at in the progression, but sounds like you live in a pituresque place though, so might be uplifting to see the surroundings. If you're more motivated by challenges, you could set yourself daily or weekly goals if that were to help.

              Comment


                #8
                Living with MND is to live with death. There are only so many days left so don't waste them. 😉👍x
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment


                  #9
                  Well said Matthew 🐲
                  when i can think of something profound i will update this.

                  Comment


                    #10
                    Originally posted by matthew55 View Post
                    Living with MND is to live with death. There are only so many days left so don't waste them. 😉👍x
                    I agree with your sentiments, Matthew, but I don't live up to them. Before Covid I was always the one who was keen to get out a lot and make the most of life. Through Spring and early summer we concentrated on the garden, making it look nice for summer when we hoped we would be allowed to have visitors. Quite a few of our friends are teachers and we were hoping to see them in the school holidays, but just as we got to mid-July we were put under restrictions that stopped people visiting the house or us visiting them. That's been the case ever since. Now, I'm finding that I'm more tired (Riluzole?) so get up later, spend most of the morning having breakfast and getting washed and dressed and just don't have the same 'get up and go' as I had. I keep thinking of the scene in Airplane when Lloyd Bridges says 'I picked the wrong week to give up smoking'. It's definitely the wrong year to be diagnosed with MND.

                    Each day is made easier with a bit of humour.

                    Comment


                      #11
                      This made me laugh Gary .. I love that film and it still makes me smile years later. I have found myself staying in bed later too and taking ages to get showered and ready for the day !

                      Its hard to find the motivation to get going when we can't have visitors and going out is probably unsafe. I feel cheated by COVID of precious time with my family. I had a reality check when our son and his wife tested positive last week. Fortunately they seem OK 🤞🤞🤞 but I had been very tempted to see them indoors before.... luckily they refused just in case.

                      The wind and rain don't help so hopefully soon we will have some crisp sunny days to motivate us to venture out. In the meantime I think I'll watch Airplane.!

                      Love Debbie x

                      Comment


                        #12
                        You summed it up perfectly, Deb
                        Each day is made easier with a bit of humour.

                        Comment


                          #13
                          Yikes Debbie, that's a bit close for comfort!!

                          Wishing them both a full and speedy recovery.

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

                          Comment


                            #14
                            I'm actually getting up earlier each day. My neurologist said feeling tired when you wake up is one sign that your breathing is fading. Just saying 😊
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                            Comment


                              #15
                              Originally posted by matthew55 View Post
                              I'm actually getting up earlier each day. My neurologist said feeling tired when you wake up is one sign that your breathing is fading. Just saying 😊
                              I think my breathing is still okay at the moment. I wore a breathing monitor overnight in preparation for my PEG next week and it seemed fine. I don't feel tired in the morning, I just feel more relaxed and to pinch the title of the thread, disinclined to get up.
                              Each day is made easier with a bit of humour.

                              Comment

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