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    Hi everyone
    First of all can I say that this forum has helped me get through the last 3 weeks,it has been so helpful to read about useful information and some posts have really made me laugh.

    Like many others it has taken some time (6 months) to get to the route cause of walking like a robot that has short circuited from the waist down!!!! Neurologist says it is PLS taking Gapapentin (which is controlling the leg spasms and Rluzole.

    Currently toddling around on a zimmer, stairs - well - like facing a mountaineering challenge but stair lift in 3 weeks (fingers crossed)

    All this happening just before lockdown has caused a few issues as far as trying to sort out equipment without the ability of actually seeing and trying out stuff and OT reluctant to visit for obvious reasons

    Can i ask for some advise regarding help with sleeping
    My husband and I were looking at adjustable profile beds on the www it's a very expensive mine field!!!!
    My issue is that i am unable to turn over, slide off my pillows down the bed which causes my back to lock, and arms starting to feel stiff and weak - can anyone please let me know if profile beds help and perhaps point me in the right direction.

    Have hired a travel mobility scooter for a month to try it out - fantastic to get out in this great weather but it is a bone shaker - any advice on these greatly appreciated - are foldable electric wheelchairs better?

    I have googgled rise and recline sofa's - not much luck?? I am unable to stand unaided from a sitting position and slightly concerned hubby may do himself a mischief!!!!

    I would also like to record my voice for if/when the time comes - can anyone advise?

    Sorry to ask so many questions but determined to try and get stuff sorted so that hubby and I can make the most of every day and stay very positive adapt and ENJOY

    Any help and advice very welcome

    Take care and keep smiling
    Yesterday is not ours to recover, but tomorrow is ours to win or lose.

    Diddly xx

    Hi Diddly and welcome to the Forum.

    Whatever about slowly progressing ALS taking quite a long time to be diagnosed, a diagnosis of PLS can take much, much longer, so getting such a diagnosis after 6 months is some going - are you attending a specialist MND Clinic? Did you have many diagnostic tests during those 6 months?

    Re the profiling bed, your community nurse should organise one for you and you may find side rails useful leverage for turning in bed. Likewise, an OT should supply a riser-recline armchair.

    You might find that an antispasmodic medication is better at reducing muscle tone than gabapentin.

    Stay safe.

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


      Voice Banking Information

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


        Hi Diddly (lovely name!)

        A warm welcome, though sorry of course you've had to join us.

        Just on the matter of voice banking - The system currently favoured by the MNDA is Acapela; they may even help with the cost if asked. Basically, you speak 350 short sentences – takes a few hours but you can do it stages – which are converted to a voice file that you can download and use with any text to speech app like Predicatable.

        The general advice is: do it while your voice is still normal. Several members here have done so, using either Acapela or the alternative ModelTalker. I banked my voice several months ago and can see no sign of needing it yet. Perhaps talk to your Speech and Language Therapist about it.

        You'll need a decent microphone - I bought a Sennheiser PC36 - and a quiet room in which to do it.

        It's a very sensible thing to do at this stage.

        Diagnosed April 2017


          Hello and a warm welcome Diddly,

          As Ellie says it is usual for a neurologist to wait a few years before categorising MND into the specific subtype PLS. I had a similar diagnosis within 9 months of the first symptoms and this due to being referred to one of the specialist MND centres. Regardless of the type of MND everyone progresses at different rates and often with differing symptoms.

          Ellie and Doug have pointed you in the right direction for voice banking.

          Regarding scooters, if you are going to buy or hire one make sure it has suspension as you have already found our pavements are bone shakers. If you use a walker then the recommended type is 4 wheels and your OT should be able to get you a wheeled trolley for indoors. Ask for one with brakes as they can run away with you on hard floors.

          Regarding beds and rise and recliner chairs then you should involve your OT as they should be statutory equipment should you meet the criteria. Meanwhile you can buy a reasonably priced bed rail to help you turn if you have the strength in your arms. Slip sheets are also useful.

          I do like your attitude and I say to people lockdown is not an issue when you are used to coping with MND.

          Best wishes and stay safe.

          I’m going to do this even if it kills me!


            Welcome Diddly. I can only echo,previous comments. In my case it was four years after my MND diagnosis that I was told by prof Talbot at the MND clinic in Oxford that I had PLS. But unfortunately there is no set pattern to the progress of MND and our journeys follow different paths.Although everything is more difficult in the present circumstances, your OT should be able to ensure you get the basic aids you need, without actually visiting. It’s better to have things now which can be changed later if necessary. As well as side rails on my bed, wendylet sheets make turning in bed much easier. Please don’t hesitate to ask questions. We have a wealth of experience and knowledge from forum members.


              Diddly hello you can find out a lot on this site.
              I am six years now with MND all down my left side and no speech.
              Getting around I used Zimmer frame for few years. But now once out of bed I am put in my Salsa M2 power wheelchair which tilts back and is comfortable so will go out in the garden later sunbathing.
              Luckily when my kids grew up and left we moved to a bungalow. I am in my own bedroom which is set up.
              My local authority fitted a ceiling hoist but luckily I still don’t need. We use a sit to stand hoist to get me in out bed onto commode chair for toilet and shower.
              The bed is a full hospital bed and the raising of legs a little and back make it very comfortable.
              Best wishes JOHN


                Sorry for the lack of communication - had a very emotional week caught me a bit by surprise suppose to be expected, poor hubby one minute very weepy, next angry but feel better as OT visited in full PPE but after a couple of minutes her goggles had steamed up to a point she could have done with internal wipers!!!!! bless her, got a few things to help so feel a bit better.

                Just waiting for the neuro OT department get in touch

                Thank you all for your guidance - hope everyone is getting a chance to enjoy the sunshine



                  It's an emotional rollercoaster for both of you indeed, Diddly.

                  Hopefully the aids hubby got will help and remove some of the daily stresses and turmoil.

                  If either of you feel your emotions are running amok, normally I'd suggest counselling from the local hospice but, in the absence of this being available in the short-term, maybe an antidepressant would help.

                  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.


                    Hi Diddly, welcome to our forums. Sorry that you’ve had to join us on the journey that none of us want to be on. It sure must have been an enormous shock for you and your loved ones to hear this (sometimes) vague diagnosis.Good luck for getting all of relevant support and for you starting voice banking.

                    About rise and recline sofas that you were looking for. You’ll get a chair more suitable for you. There’s single and dual motors versions. Dual motors are better for us so that the seat and back can move independently and so get to a comfy position for you. They can get you up to a standing position and recline for napping. Mine was very expensive but I wouldn’t be without it now.

                    Take care, Lynne
                    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.


                      Hello Diddly,
                      I agree with Lynne, having being loaned a single motor riser recliner chair my OT got for me, now I’m not as mobile, it’s the most uncomfortable thing I’ve ever sat on, I’ve bought countless pressure relieving seat cushions, non make it bearable, I was constantly having to readjust my posture, I’ve finally saved to get a HSL twin motor riser recliner, it’s a game changer, I can adjust the chair just how I need, I’ve also ordered there adjustable beds, haven’t arrived yet but I’m hoping they are just as good, definitely go for a twin motor chair