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    To try to walk or not to try

    Good morning all,

    Being really bunged up In my head this morning I'm in that kind of fragile space I get into from time to time.

    I am still walking around the house, which is pan flat, but it takes me a bit of a while in the morning when I get out of bed to get my
    in a way where I feel safe from falling - And I'm losing confidence having had 2 falls in the last 4 weeks, 1 of which required attendance at A&E.

    Despite agitating, I still only have the Mickey Mouse manual wheelchair that the local wheelchair services provided me and which is not a suitable size for me – another colleague in the local as thee same wheelchair of the same size and she is 6 inches shorter than me.

    I am clear this is a use it or lose it thing, so I'm wondering how others have approached this?

    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– 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
    I've got zimmers with wheels at the back that are great for my wobbly days. Only good thing to come from the hospital from hell. 👍😁xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    Comment


      #3
      Hi Andy I haven’t had falls but my legs became like jelly and I felt unsafe even using the Zimmer frame.My consultant told me that his view was I should stop putting myself at risk of falls reminding me that I could fracture hip etc .He suggested I use wheelchair.
      I ignored him for a further few weeks but now I can just about transfer.I do exercises to prevent pain from stiff joints and get out of wheelchair to lie on my side in afternoon for pressure relief,
      I try and stand up from wheelchair every hour or so to relieve pressure on my bottom.

      Is it worth getting OT to re refer you to wheelchair service for another manual chair or a powered chair?It took 6 months for me to get a powered chair.

      Hope you wear a life line so you can summons help if you fall.Also I recently got a pager from lifeline service so I can alert my husband if he is outside that I need his help.

      Good luck Andy.
      Best wishes
      Mary

      Comment


        #4
        Andy get in touch with wheelchair service and ask for an assessment for an powered wheelchair. If they won’t do it without a referral from a professional then speak with your OT about it. Good luck. Love Lynne x
        Last edited by Lynne K; 22 September 2021, 10:25.
        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.

        Comment


          #5
          nunhead_man fear of falling means I've ordered myself a lightweight wheelchair for outside and any distance. Self propelling or assisted. OT provided a walking stick for indoors..still trying that out. I'm walking albeit very slowly....a bit of furniture holding.
          My dread would be a fall leading to serious injury and hospital.
          Sensible to get a new wheelchair assessment. Good luck👍


          Just to add I've been referred to wheelchair service for assessment.
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

          Comment


            #6
            Hubs got a folding wheelchair really quickly from OT

            He stopped walking in January 2021 due to falls and discovering I can't get him off the floor so had to call 999 for Ambulance, twice.

            we both thought he stopped wallking before he lost his balance, with physio possibley could have walked for longer.
            They were not keen on any sort of intervention and everyone pushed for staying in wheelchair.

            He can thankfully still transfer with my help as a moving bannister BUT I now have bad shoulder pain (I thought I was invinsible)

            BUT

            The risk for falls was too much for my piece of mind. A broken hip or fall down the stairs.

            He now has a power wheelchair but he feels trapped as it kind of fixes him to the spot. He can't adjust himself in it like the riser chair
            i have to move it with the controls.

            Due to loss of hands very quickly he can move the commode/fold wheelchair with his feet but not comfortable to sit in.

            We got the power wheelchair within the month (there was muttering about longer delays)
            but still waiting for the lowered door in the "wheelcair" accessable ground flat. So still house bound.

            So there is pros and cons

            Good luck and best wishes

            Comment


              #7
              It is a conundrum for sure Andy, and a nasty one.

              Originally posted by nunhead_man View Post
              I'm losing confidence having had 2 falls in the last 4 weeks, 1 of which required attendance at A&E.
              Sorry to hear this, Andy. You know what I'm about to say, don't you 😏 Falling can result in substantially setting you back physically, not to mention psychologically. If you had a leg or an arm immobilised in plaster or a boot/sling for a number of weeks, that would quickly atrophy muscle.

              Originally posted by nunhead_man View Post
              I am clear this is a use it or lose it thing,
              I'm not sure I buy into that theory 100% - if it were entirely true, none of us would lose any ability, especially talking and breathing...

              Yes, it is 100% advisable to keep moving, how you choose to do that is up to you. You could 'walk', you could use a pedal machine to exercise legs and arms. You can maintain weight bearing in transferring or even having an extended session in a standing hoist. You can do gentle resistance workouts.

              Moving safely is key or you could find yourself laid up...

              An unenviable decision, but one I'm sure to which you'll find a hybrid and evolving solution.

              Love Ellie.

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

              Comment


                #8
                Having had a fall when losing my legs really made me start using a wheelchair (I put it off for as long as possible). It gave me much more freedom and less to worry about for my husband. Your OT should get one quickly for you but definitely get onto wheelchair services to start the process

                Comment


                  #9
                  I'm not sure about the use it or lose it theory 🤔 either although obviously its best to keep moving as long as possible.

                  Just a word of warning Andy and I'm sorry to keep mentioning this. I kept walking until had a really bad fall which resulted in life threatening blood clots on my lungs. My neurologist said most people with MND don't "give in " until they've had a bad fall. I'm not saying this could be you but safety is a priority and your OT should be chasing up a wheelchair which is comfortable for you.

                  Take Care,
                  Love Debbie x

                  Comment


                    #10
                    Good afternoon Matthew

                    Originally posted by matthew55 View Post
                    I've got zimmers with wheels at the back that are great for my wobbly days. Only good thing to come from the hospital from hell. 👍😁xx
                    Thank you this – The trouble is that I am arm onset and so need something that supports my elbows but does not fly away from me and take me down
                    Warmly


                    Andy

                    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– 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


                      #11
                      Thinking cap back on mate. 👍😁🤗🤔xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                      Comment


                        #12
                        Thank you all – I should have made it plain that I have had a wheelchair assessment and I waiting for a powered wheelchair given the very Mickey Mouse push wheelchair which does not fit me.

                        Thank you for reminding me about the damage I could cause myself if I fell and thank you Ellie for reminding me about the muscle atrophy that will come from being plastered up

                        I need to think how being safer while maintaining my load-bearing musculature as long as possible is going to work for me - So far afternoon we have thought about having me scoot about the house my office chair has casters and using a chair we have In the wet room for me to use In the shower rather than struggling to stand up
                        Warmly


                        Andy

                        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– 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


                          #13
                          Good morning,

                          Having been to my GP surgery for my flu vaccine I thought it was time for update.

                          Still scooting around the house on my office chair and may have my new push wheelchair next week if the fates are with us – used the Milllbrook provided one this morning to get into the surgery which has a lovely new slightly sloping ramp.

                          Still nothing on my promised chair and I suspect the wait is going to try my patience take me to the limit of my ability to weight bear.

                          I had some problems last week when I got lots of foot pain combined with getting to know carers who are giving my wife two times 2 hours breaks.

                          Of course carers do not want to lift any of my weight when I try to get from chairs or toilet so chased my occupational therapist for some help and I am getting some sort of "get me out of my chair" lifting device, together with a type of Zimmer frame that has armrests.

                          Managed to sit in my office chair from 09:30 hours to 16 hours yesterday with a couple of breaks to run through the current list of funding applications that the MNDA has to be scrutinise by BRAP – biological research assessment panel. Lots of interesting stuff to do with astrocytes and ATP proteins plus a briefing to our assembled volunteer scientists who both present and review these funding applications on the new Association Strategy.

                          Onwards and downwards!
                          Warmly


                          Andy

                          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– 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


                            #14
                            Thanks for the update Andy and your work for the MNDA. I hope that your elbow supported zimmer works well and that your powered wheelchair turns up soon. Love 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.

                            Comment


                              #15
                              Originally posted by nunhead_man View Post
                              Of course carers do not want to lift any of my weight when I try to get from chairs or toilet
                              Too right!

                              I wonder what "lifting device" will appear - please let us know Andy, in case it's a new type of gizmo. xx

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

                              Comment

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