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This is me, warts and all.

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    This is me, warts and all.

    Hi everyone,

    I was diagnosed with MND/ALS in November 2019. My walking had been deteriorating for around 8 months, including falling more and more frequently. I completely lost the ability to walk just three weeks after my diagnosis.

    When the consultant came and gave me the diagnosis, I told him that I wanted to be a guinea pig for anything: drug trials, surveys, examination by medical students, even a pin cushion for student nurses! I felt that I wanted something good to come from this - and I still do. It helps me to cope, knowing that others might learn by using me.

    I hope no-one will mind but I don't feel ready to use my given name on here, yet.
    Dina

    Trying to keep positive, but not always managing.

    #2
    Hi Giĺlette, welcome to this very helpful forum. I was diagnosed in January , I can still walk, but legs are getting weaker. I hope you are getting lots of support with everything. This forum is very friendly, I am sure others will be along shortly to give you lots of advice etc
    Best wishes
    Sheila.

    Comment


      #3
      Hi Gillette,

      Welcome to the forum.

      Hopefully you are receiving on-going support from a team of healthcare professionals, such as an occupational therapist, physiotherapist, speech therapist and dietitian.

      If you havn't done so already, you may wish to contact your local Regional Care Development Adviser. The Advisers offer us ongoing support and advice and are very friendly. A link to further details is provided below:-

      https://www.mndassociation.org/getti...ment-advisers/

      I admire you for offering to take part in medical research. It sounds like you are a very kind-hearted person who, despite the challenges you face, is very generously thinking of others.

      Please feel welcome to ask any questions, as and when you would like to. We are a friendly forum and we try to offer as much support and advice as possible.

      Love and best wishes,
      Kayleigh x
      Last edited by Kayleigh; 3 April 2019, 13:57.

      Comment


        #4
        Hello Gillette, sorry you have to be here but the forum is friendly.

        Are you at Salford Royal under Miss A Chouch as well. I am and got the diagnosis from her in October 2018

        If you haven’t already please consider Voice Banking whilst you still have speech.

        Good wishes to you and yours

        Comment


          #5
          Welcome to the Forum, Gillette but sorry you've had to join us.

          Hopefully you've stopped falling now?

          Are any other parts of you affected at the moment?

          Progression often comes in phases - a period of fairly relentless progression can be followed by a fairly benign period.

          Best wishes to you.

          Love Ellie.

          Ps. It took me a while to make my photo public so don't worry about your name!!
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Hi Gillette and welcome to the forum,

            Sorry to hear that you can no longer walk.

            We do not mind you not using your name and I will probably always use the name Gillette anyway.

            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.

            Comment


              #7
              Welcome, my Husband was diagnosed last July. We are currently in Ireland having a short break. People are friendly and supportive on here

              Comment


                #8
                Thank you all for the lovely welcome.

                Yes, I am receiving a lot of help and support from all sorts of health professionals. My OT is my "problem solver" and does a great job!
                Dina

                Trying to keep positive, but not always managing.

                Comment


                  #9
                  Originally posted by Dis1960 View Post
                  Hello Gillette, sorry you have to be here but the forum is friendly.

                  Are you at Salford Royal under Miss A Chouch as well. I am and got the diagnosis from her in October 2018

                  If you haven’t already please consider Voice Banking whilst you still have speech.

                  Good wishes to you and yours
                  Hello Dis1960,

                  Yes, I am at Salford Royal but my consultant is John Ealing. They seem to have a good system running there, don't they?

                  Thank you for the heads up about voice banking. I do have an outstanding referral for it.
                  Dina

                  Trying to keep positive, but not always managing.

                  Comment


                    #10
                    Hi Gillette, your chosen name brought a smile to my face. You must shave regular so are male

                    I'm sorry about my late reply. I haven't been on forums as often in the last week or so and when I did I just dipped in and didn't read all. I've been otherwise occupied.

                    Welcome to our forums. I'm also sorry that you've had to join us. I'm also with Salford Royal under Amina Chaouch, lovely doc and great team. We're now living in Radcliffe, a little closer to Salford than we were (Bury) up until November 2018.

                    About not feeling comfortable using your real name yet. I can understand that. I jumped in with both feet and used my name when I rejistered but had some regret soon after when I realised at that time that forums were set to 'public.' But I was happy to receive notification recently that this had been changed to 'private.' That made me much happier and I hope that it can reassure you.

                    I'm still (just about) getting around at home using my walker (some falls happen) but outside it's too much risk so my husband pushes me in my lightweight travel wheelchair. I hope that the services have sorted you out with wheelchairs.

                    Take care and chat soon. Lynne
                    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.

                    Comment


                      #11
                      A warm welcome to you Gillette, although I am obviously very sorry for your diagnosis.

                      Like Lynne, I am sorry for my late reply, I think I must have missed your original post. Dont worry about not using your name, your user name is great. It took me a while to tell even close friends about my diagnosis because i needed to come to terms without myself.

                      I hope you have good help and support to avoid falls and to keep safe. Ironically I had less falls after my diagnosis because I stopped struggling to walk and used a wheelchair. I still can walk a few steps using a rollator at home as long as I have supports to lift my feet and I use it to transfer. We do go out every day... Most places are wheelchair accessible although sometimes it involves a little homework first.

                      There is always really good practical advice and emotional support on the forum.
                      Take Care, Gillette.
                      Love Debbie x

                      Comment


                        #12
                        Hi Gillette. Welcome to the forum. My husband is under Salford Royal too..he started off with John Ealing for a few years, then Mr Hamdallah and now Amina Chaouch. You’ll find lots of support and good advice here.
                        Best wishes
                        Boiler x

                        Comment


                          #13
                          Hi, Lynne K, I also live in Radcliffe! Sorry for the delay in responding to you - life seems to be a blur of carers, OTs, Physios, SALTs, palliative care nurses, drug trial days and anything else you can think of. I am definitely being well supported by the various community teams. I have had manual and powered wheelchairs provided. I have been amazed at the equipment provided - and all free of charge.

                          If you fancy meeting for coffee sometime, give me a shout.

                          By the way, sorry to disappoint you but I am FEMALE. Ha ha ha! The nickname refers to something other than a mens' razor.
                          Last edited by Gillette; 17 April 2019, 12:09.
                          Dina

                          Trying to keep positive, but not always managing.

                          Comment


                            #14
                            Hi Deb. I have to use a wheelchair as I cannot walk, weight bear or transfer. Going out can be problematic as there is a shortage of dropped kerbs around the area where I live, meaning that I have to go on the roads, which is not ideal.
                            Dina

                            Trying to keep positive, but not always managing.

                            Comment


                              #15
                              Hi Boiler68. I saw Dr Hamdallah whilst I was an in-patient - he brought a group of his students to examine me. I haven't seen Amina Chaouch.
                              Dina

                              Trying to keep positive, but not always managing.

                              Comment

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