No announcement yet.


  • Filter
  • Time
  • Show
Clear All
new posts


    Hi I was diagnosed a month ago after nearly a year, struggling to walk at all and still waiting for motorised wheelchair . Trying to keep cheerful with help of great family and friends.

    Hi Jude,

    Welcome to this wonderfully supportive forum, but sorry you have been given the diagnosis. There is a wealth of knowledge, information and experience on here and people are happy to share those. If you have questions, or need to offload then this is a great place to do it.

    Best wishes,

    Trying to keep positive, but not always managing.


      Hello Jude11 and welcome.

      I’m sorry to hear that you have recently received this diagnosis and your head must still be spinning. As Dina has said you will find support and advice here from our wonderful forum family, although it sounds like you have your family behind you. Positivity is a good friend on this journey so keep looking forward. You mentioned a power wheelchair and if you need help speeding up the process then I suggest you contact MND connect mailto:[email protected] tel:08088026262

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


        Hi Jude and welcome to the forum;

        Sorry to hear of your recent diagnoses after quite a long period of uncertainly. Hope you get the equipment you need to live life better and safer soon.

        Please feel free to ask any question or just share things with us.

        Best wishes, Terry
        TB once said that "The forum is still the best source for friendship and information."

        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


          A warm welcome from me also Jude, even though I know you'd much rather you didn't have to join this Forum in the first place...

          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 Jude. I'm sorry that you've had to join us on this horrid journey. As others have said you have found a great support resource here and non judgemental friends who are either on a similar journey and carers/family of MND sufferers. Good luck with getting a powered wheelchair very soon. The idea to ring MNDA is a good one. 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.


              Hi Jude and a warm welcome to the forum,

              I am so sorry for your diagnosis. I am sure you are still reeling from the shock, even if you have had symptoms for some time . It's good you posted because the forum is a place for emotional and practical support from people who really understand and as Dina said, there is a wealth of knowledge.

              It's great you have family and friends to keep you cheerful and stay positive. I hope you have news of your powerchair soon.

              Love Debbie


                Hi Jude, and a warm welcome to this very friendly forum. Lots of help and advice on here.
                Take care


                  Judy needs advice on hip pain in bed.

                  Originally posted by Jude11 View Post

                  any advice guys, can't turnover in bed any more as legs don't move so sleeping a lot on my back. This is making my hips very painful, tried pillows various places without success. Saw GP yesterday who have me morphine based painkiller which made sleep bit better but makes me feel sick. What are your experiences?

                  Judy xf
                  Judy, forgive me for posting your post in another thread but I fear it may get lost in chat about soggy crisps flavoured with out-of-date spices!!!

                  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 Judy,

                    Start by contacting your OT who should assess your needs and your issues.

                    If your arms have enough strength in them, you can get bed rails or bars which you grab to help you turn on your side (you don’t need much manual dexterity)

                    If you do end up having to sleep on your back all night, the key is having the right mattress - alternating air ones are best. I can’t move in bed and sleep very comfortably all night on an alternating air mattress.

                    Do you have a profile bed (a bed that’s adjustable head, end and height) ? By raising the end, for example, you redistribute your weight and take pressure off various joints and muscles. Or just putting a pillow under your knees can take pressure off the hips. There are also long cushions/pillows which could keep you sleeping on your side, though you may not necessarily be able to turn over.

                    There are fancy beds which also swivel or tilt, but these generally have to self-funded, unless you’re very lucky !!

                    An air mattress can usually also be put on a standard bed - there are different types.

                    Be aware that morphine causes constipation, so keep an eye on that. Hopefully with a better bed set-up, you won’t need painkillers…

                    In bed, I often get sore muscles at the very tops of my thighs, so put hot wheat packs on them, which works a treat.

                    Hope you and your OT find a 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.


                      Thanks Ellie
                      I have OT coming on Tuesday so hopefully they will sort out the bed, I have grab rails but can't move bottom half any more so they don't work. They did mention an air mattress so fingers crossed!!

                      Not sure that I will take a tablet tonight as the sickness has only just worn off, my husbands birthday tomorrow and our son is doing a family roast and don't want to feel sick for that.

                      Judy xx


                        Thank you for reposting my thread I obviously did it wrong in the first place!!

                        Many thanks to you all for the advice and support



                          Hi Judy,

                          I hope you and your family enjoy celebrating your husband's birthday tomorrow. Your son sounds very kind and thoughtful and a home-cooked Sunday roast sounds delicious.

                          I hope your husband has a very Happy Birthday!

                          Love and best wishes to you and your family,
                          Kayleigh x

                          P.S I hope your OT can supply you with a suitable mattress (and possibly an electric profile bed, if you don't have one already) so that you can sleep more comfortably. (Sometimes, district nurses can supply beds and mattresses but it sounds like your OT is being very helpful as well.)
                          Last edited by Kayleigh; 9 November 2019, 22:04.


                            Hi Judy,

                            Enjoy your husband's birthday Sunday roast. It sounds better than soggy crisps even though they are delicious too.

                            I sleep on by back too as I am unable to move my legs. I can use my arms to move them but it's a mega effort and wakes me up. I am awaiting an air mattress too but I do sleep OK. As I dont move I have been warned by my nurse and the very kind friends on this forum about pressure sores. We cover my legs and feet in barrier cream every night. You get lovely smooth legs and a very greasy bed!

                            Hopefully you will get some advice from your OT soon.
                            Love Debbie x


                              Hi Debbie
                              Yes I have barrier cream on bottom, it is so greasy!! Hopefully air mattresss will be better.

                              Judy xx