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(Trigger warn:- exertion activity) Endurance Activities

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    (Trigger warn:- exertion activity) Endurance Activities

    I was reading the BBC news article about the Scottish high peaks cycle challenge and MND fundraising...

    The participant has been diagnosed 4 years and took specialist advice from endurance athletes before setting out.

    I was thinking of doing something similar...
    Although I live in Cheshire, I'm in Wiltshire every 6 weeks or so with a work / social stuff.

    Years ago I walked about 28 miles of 'The Ridgeway' ancient trackway in a day and into the evening (from Waylands Smithy, Uffington White Horse and on to Streatley).

    I've walked bits of it since and whilst still (relatively) active - I was thinking of doing the 75+ miles over 3 or 4 days before the end of this year for MND fundraising and awareness (and whilst I still can).

    I have 'reasonable' local support contacts / friends part way along the route, as well as a few small businesses and friends prepared to make a donation nearer home and in that locality.
    I'd also try to do the route again at a later date in a high mobility power chair for 'personal peace of mind' as well as 'why not'.

    Bluntly, I'm looking for guidance around 'exertion level' practicalities from folk who may have done similar at whatever level they have felt comfortable with.

    (For myself, it's a route and terrain I'm familiar with and have reasonable practical support and contingency along the way - as well as being a personal 'headspace' thing of something I want to do whilst I can).
    Davy Zyw completed the gruelling 265-mile ride to raise money for the Doddie Weir Foundation.
    2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - "Interim diagnosis limb onset ALS." Confirmed Sep 2022: MND.
    Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

    #2
    Arcadian I think a lot of people would find it difficult to answer as not everyone is mobile and can imagine doing anything like that!
    I recently asked my mnd nurse if exercising was bad for mnd and if it would speed up the progression. She said walking would be the most recommended form of exercise for myself. She said to keep the muscles not yet affected by mnd stronger. But to also get the balance right with how much. This I have learnt the hard way. And the tiredness in legs afterwards and into next day was dangerous for me and the fatigue. Be sensible I think with what u plan to do and be guided by how your body feels. I can't personally do now what I could do 6 months ago so that would also need some thoughts. Xx
    Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

    Comment


      #3
      Zante - yes, trying to balance sensitivities, practicalities and reasonable levels of exertion without risks, against wishful thinking. I set up my life and work (left a mainstream employer, now self-employed) around an unrelated serious illness around 10 years ago, without any thought for anything else that could be around the corner.

      I do about 1/5 of the physical work I used to (conservation habitat management - meadow, orchard, woodland) - the guy doing the bike ride inspired me to try and have a go at something I'd put off, regardless of present emergent circumstances.
      Last edited by Arcadian; 23 August 2022, 20:12. Reason: spelling / sausage fingers
      2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - "Interim diagnosis limb onset ALS." Confirmed Sep 2022: MND.
      Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

      Comment


        #4
        Arcadian I really do know where you are coming from. I have in the past run half marathons and took part in a lot of long distances and its accepting that that is no longer feasible is really difficult to do. Like yourself i wanted to do something memorable like walk the Rob Burrows marathon next year ( can no longer run) but my rational side knows I wouldn't manage it. How about doing something yourself independently spread over a longer time like completing a chosen distance but over a time that allows shorter durations of exercise and more rest times where u r not committed to finishing within the time allocated by events organiser's? Anything u accomplished would be rewarding and a sense of achievement. Try and see the positives of what u can do and not what u can't ( I was advised to do that and it helps sometimes!!). All the best. X
        Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

        Comment


          #5
          Yes, I've both subtly slipped into doing things I can, whilst shrinking from things I can't (or rationally avoiding the things that have become challenging to avoid psychological impact - e.g. refurbishing a clutch master cylinder on a tractor should be about a 3 hour turn around time for me, but actually takes nearly 2 days now because of reduced hand strength, dexterity issues and some 'executive function' issues around getting the tools and spares in one space).

          I've spent the last 3 months 'revisiting' friends, places and events I used to do (whilst I can), without getting upset too much about some difficulties (as well as planning around potential adaptations).

          I'm trying to balance a 'bit of a push' personally whilst I can, supported by friends and family who 'understand', together with wider friends who have 'had to' suddenly understand, as well as folk on the edges trying to gain awareness.

          I have an unrelated pre-existing invisible disability, where I've had a positive impact on a few folk by directly highlighting practicalities and challenges, or sensitively and discretely signposting resources and support as appropriate.

          I think deep down I'm possibly 'masking' the realities and awareness of the impending implications upon myself for now (I've done a lot of background work towards my future and future care and circumstances - legal / financial / practical / credible source information) - I just feel like a bit of a push whilst I can regarding awareness and fundraising and some time out from my personal surroundings in a landscape I enjoy.
          Last edited by Arcadian; 23 August 2022, 23:16. Reason: spelling
          2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - "Interim diagnosis limb onset ALS." Confirmed Sep 2022: MND.
          Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

          Comment


            #6
            Part of me is saying yes go do it while you can. Have something to focus on other than this horrible illness and the other part of me, I'm not usually negative, but what if you cant complete what you want to achieve? Sorry I'm looking at it from this point of view but I know how devastating it is not being able to do/finish something. Smaller chunks might be less grueling.
            just thinking out loud!
            🤗
            when i can think of something profound i will update this.

            Comment


              #7
              Are your legs still strong? Much muscle atrophy? Why don't you work out how many miles you would do if you did the challenge. Then try maybe 2 days. Then you will have an idea.

              Remember to keep muscles warm whilst exercising and it you can take a warm bath afterwards. Vicks is great for putting on aching muscles.
              Diagnosed May 2021 bulbar onset als.

              Comment


                #8
                Arcadian I think I identify with your wanting to keep your horizons as wide as you can, whilst you can. All the best with it x
                Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                Comment


                  #9
                  Arcadian Ask your physiotherapist's advice - if you know your muscles' abilities and limits, you can plan.

                  Good luck xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

                  Comment


                    #10
                    Present Physio isn't overly concerned other than "try to remain active, but don't overdo it..."
                    I am however (mid admin transfer) between a local hospital and regional centre awaiting MDT assessment.

                    I'm just aware that the sensations in my legs I have at present, are how my arms felt 12 months ago (arms now have measurable weakness change and visible atrophy in 12 months).
                    Therefore I'm keen to plan something whilst reasonably comfortably able to, ideally by Autumn this year or by Spring next year for practical (and personal wellbeing) aspects.

                    The way things have gone with declining work activity level abilities in a year, I'm not sure how much extra pressure, compared to realistic time frame, I'm putting upon myself.
                    2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - "Interim diagnosis limb onset ALS." Confirmed Sep 2022: MND.
                    Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

                    Comment

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