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    Hello

    I'm new to this forum, I was diagnosed on the 5th January 23, with MND als which is fast progressing, I've gone through the emotions from being angry and sad and I'm very fearful of when I can no longer use any of my limbs. I would really like to have some normality but I find knowing what equipment I need mind boggling then getting the equipment needed so difficult, I would appreciate the help of others to guide me on equipment, I've not had a shower since the 13th Jan as I can't access mine now. I also wondered how people manage to go to the loo when out, I xsn no longer stand, I would love to go for a meal out but then worry how I would go to the loo if I needed to, how do i transfer from wheelchair to toilet? Any help or thoughts would be greatly appreciated

    #2
    JudyR welcome to the forum. I think you raise some good questions. I am still able to stand and transfer thankfully, but hopefully others will be able to suggest something x
    Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

    Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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      #3
      Sorry to read this JudyR - particularly the uncertainties and pressure this imposes upon you.
      Is your GP and local hospital being helpful and proactive?
      Do you have access to a MND multi-discipline team clinic?

      Do use the MNDA Connect helpline for additional guidance, as well as finding if you have alocal MNDA support group, who may have an Area Coordinator who can help too
      2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
      Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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        #4
        Hi Judy, I am so sorry that you find yourself here 😔

        After diagnosis, everything does seem extremely overwhelming and you will have lots and lots of questions about what is going to happen to you. Hopefully you will find that the support team around you will provide many of the answers that you need. Your MND clinic and your neuro OT will be very important in helping you with this.

        Equipment is available to help you continue to manage your day-to-day living and certainly things like accessing the shower can also be resolved. As Arcadian has suggested it might be worth reaching out to MND Connect to help you with navigating some of the relationships you need.

        Take care and I hope that you get the support you need quickly x
        Foxes Never Quit 💙

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          #5
          JudyR A warm welcome to the forum, Judy, and thank you for having the courage to make that difficult first post.

          You have asked some big questions, some of which have scary answers 😬 and honestly, a lot of information we'd give you would not make sense to you at this ststage, but there are gadgets and gizmos available and supplied enabling transfers no matter one's mobility, weight-bearing ability and core strength.

          You will have access to an occupational therapist, OT, among other healthcare professionals; fingers crossed they are good as their role is pivotal in this area!

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

          Comment


            #6
            JudyR Oops, I forgot to say...

            Most of us end up with a wetroom: no stepping into a shower tray, just a level floor, perfect for easy access. xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              Hi @Judy R and a warm welcome to our friendly forum. I'm so sorry for your diagnosis but I'm glad you've found us.

              The early days are so overwhelming and everything is worrying. I really hope you have the support of a proactive occupational therapist. Mine visited our home within days of my diagnosis and gave ideas to make life easier and suggested a wetroom . I was still in a daze but agreed to set the ball rolling.

              As Ellie says there is possibly far too much to take on board all at once. I have no use of my legs but still enjoy meals out and trips to Spain.Spending time with the family is always filled with laughter. What I'm trying to say is that there is still life to be lived albeit with the challenges of MND.hard as it might seem to you now.

              Take care of yourself,
              ​​​​​​​Love Debbie x

              Comment


                #8
                Thanks Debbie I know it's a personal question are you still able to transfer to a loo when out or do you use other means?

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                  #9
                  JudyR I just would like to welcome you to the forum . I am sorry that you have found the need to be here with your diagnosis.

                  Its a huge shock to try and come to terms with. But the community support will soon all come together and help you especially with the shower situation and being safe and able to move around your home with the equipment and making existing features adapted to what you need.

                  I hope that you have some decent support also from family and friends.

                  The forum is a friendly informative and fun environment with so much advice and information which I hope you will find helpful. Take care xx
                  Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.

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                    #10
                    JudyR welcome to the forum. So sorry about your diagnosis. It is overwhelming at the beginning but hopefully it will all fall into place regarding practical help. I hope you have access to all the professionals especially Occupational therapy. They are the ones who can arrange all sorts of practical help for you. Take care.xx

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                      #11
                      Hi JudyR welcome to the forum. Sorry to hear of your diagnosis and as everyone has said the inital stages can be overwhelming. I hope the OT will be able to give you good advice, along with equipment to help and to look at any bigger adjustments to your home that may help.

                      In terms of transferring to the loo when out I'm sure there will be some techniques that can be recommended for you, depending on your arm strength. My husband is a wheelchair user (due to being paralysed from an accident many years ago) and he uses his arm strength to lift over onto the toilet (he deals with his clothing once on the toilet).

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