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    Introduction

    Hi everybody.
    My name is Sarah and its taken me about 1 hour to find out how to write something here, so not a very good start! I was diagnosed with flail leg variation of MND about 2 years ago and am now in a wheelchair all the time. I am struggling with transferring from the chair to anywhere and have been trying to find any helpful information to make life easier. I contacted my local OTs nearly 4 weeks ago and am still waiting......... I finally came across this forum and have breathed a sigh of relief at the prospect of speaking to like-minded people! Any tips /ideas would be most gratefully received.

    #2
    Hi Sarah and a warm welcome to the Forum.

    It can be so hard to make that first post - don't diss yourself, you've made a great start!

    Get back on to your OT - you know that saying, the squeaky wheel gets oiled, well unfortunately that applies to us also...

    Can you weightbear on your legs? Arms? Have you good balance? Have you anybody to help you transfer? This will determine what transfer assistance is best suited to you.

    Take care.

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

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      #3
      Hello Sarah and welcome aboard. 😊x

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        #4
        Hello and welcome Sarah.

        I hope your hospital where you were diagnosed has a care team that can apply leverage to your local OT. 4 weeks is too long to wait for assistance.

        Best wishes,
        Barry
        I’m going to do this even if it kills me!

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          #5
          Hello Sarah and a warm welcome to the forum,

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            #6
            Welcome Sarah

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              #7
              Oops sorry Sarah ... sent too soon !

              Firstly, well done for your first post.. Its hard to put things into words sometimes.

              Assistance with transfers depends on a number of things but 4 weeks seems too long to wait if you need an assessment. Your MND team should be checking to see what needs to be done to make transfers easier and more importantly safer. They always asked me to transfer at clinic visits to see if it was safe and in these covid times they asked me to send a video from home ( easier said than done !)

              I cannot weight bear but am able to transfer sideways from my power chair to the loo and shower chair using boards and slippy sheets.My arm strength is OK. I have a smaller wheelchair the same height as the bed and use a slippy sheet there. However I need someone always in front on me when I transfer in case I topple forwards or the sheet is just too slippy !

              I really hope you get some advice soon because worrying about transfers is very stressful,
              Take Care,
              Love Debbie x

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                #8
                Good afternoon Sarah - welcome

                I echo the thoughts that you ought are seen somebody by now despite the backlog caused by Covid. Can you name the town or county?

                As to the transfer things et cetera I can't be too much help as I am arm onsets not leg onset and only now getting a report from my physio to say that my right leg is losing some function - When I'm in my boots outside and about my right foot slaps a bit onto the ground
                Warmly


                Andy

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

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

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                  #9
                  Hi Sarah

                  Welcome, I will say 4 weeks is too long. Phone and also included your MND nurse. Really push falls risk etc. Say it is urgent, light a fire under them.

                  If you have someone to help or if you are solo, equipment and advice may be different.

                  Husband diagnosed during COVID, we had phone consultations with physios.

                  The hand physio left splits today and we have been have actual visits for the last 4 weeks. (North England)

                  Apparently they were redeployed for months and getting back to their client base plus any newly diagnosed.

                  Best of luck, I would phone all the numbers you have. In my area, they all seem to be based together in a community team and talk to each other.

                  Keep pushing

                  I worked in community in the past and it does work. Being polite and waiting does not.

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                    #10
                    nunhead_man Andy, an AFO (Ankle Foot Orthotic) will help with the foot drop and provide stability and safety - ask your physio or OT.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                      #11
                      Welcome to our band of brothers and sisters 😊 love, Lizzie x

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                        #12
                        Hi Sarah, welcome to forums. I hope that you can get help with your transfer problem quickly. Sorry that I don’t have an appropriate solution. Love Lynne x
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                        I'm staying positive and taking each day as it comes.

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                          #13
                          Thank you everybody for your warm welcome and advice. I do have use of my arms but still need help. I will get in touch with the team at Kings (only open Thursday mornings) and get them to light a fire under Lewisham OTs. They wont know what’s hit them!!

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                            #14
                            Dear Ellie,

                            Thank you for this

                            Originally posted by Ellie View Post
                            nunhead_man Andy, an AFO (Ankle Foot Orthotic) will help with the foot drop and provide stability and safety - ask your physio or OT.
                            In fact the information about the slapping foot came from a physiotherapist who visited me at the instigation of my occupational therapist. She heard that I'd walked a couple of miles the previous day, as indeed I have done today and suggested that if I wasn't having any suggestions of tripping, which I'm not, it was a bit early for a ankle foot orthotic.

                            My test for myself is how I go up and down stairs and as soon as I think my legs are teetering under me I shall go back to her and get the orthotic

                            Warmly


                            Andy

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

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

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