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    #31
    Hello everyone !
    My name is Michael and im from North Carolina.
    Keep strong !
    Best wishes !

    Comment


      #32
      Hi Michael and welcome to the forum,

      What type of Mnd do you have and how is it affecting you?

      North Carolina sounds a lovely place.

      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


        #33
        Now I’ve got an appointment on 27th March at cardiorespiratory for a sleep study test.

        There should have been a leaflet too but that is missing

        Changed to 10th April. Still no leaflet but we asked about posting the test back and that is only done if the test was requested by a GP. There is no way my wife can get to Salford Royal and back in rush hour traffic and still get into work so returning the test may be problematic

        Now changed to 22nd May
        Last edited by Dis1960; 13 April 2019, 06:40.

        Comment


          #34
          Clinic today

          Weight in December 90.1kgh
          Weight today 68.7kg

          Comment


            #35
            Hi Dis,

            That’s a significant weight loss over 6 months. Did the doctor recommend diet supplements?

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

            Comment


              #36
              Did someone you saw come up with a plan to stop and reverse your weight loss Douglas?

              You don't need me to tell you that losing nearly a quarter of your body weight isn't good

              Love Ellie.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #37
                Hi Dis

                Originally posted by Dis1960 View Post
                Now I’ve got an appointment on 27th March at cardiorespiratory for a sleep study test...... we asked about posting the test back and that is only done if the test was requested by a GP.
                I have been involved in this game as my neurologist wanted a baseline for my breathing, so they could notice when it changed. I had 2 tests and both involved getting the unit back to the testing people at Kings in my case after the test.

                I am lucky as my wife works there and she was able to drop the unit off on her way into her own unit, which set me wondering as to whether you might have a neighbour who works in or near the hospital?

                Warmly

                Andy
                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"

                Comment


                  #38
                  Originally posted by Dis1960 View Post
                  Clinic today

                  Weight in December 90.1kgh
                  Weight today 68.7kg
                  Hi Dis, I was at the clinic in Salford this afternoon. When they weighed me it seemed that I had put on 18 kg! My body is telling a different story.

                  Did you know that they have a Meet and Greet system at Salford Royal? They have a group of volunteers, one of whom will meet you at your car or taxi and then they will use one of the hospital wheelchairs to take you to your appointment. When you have finished at the clinic, the staff ring through for one of the volunteers to collect you.
                  Dina

                  Trying to keep positive, but not always managing.

                  Comment


                    #39
                    Indeed Barrie and Ellie but all initially said was a different dietician would be in touch.
                    They were more about genetic counselling as I was told I have the C9orf72 mutation

                    The other problem is an increase in CO2 level in my blood so the idea is to be an inpatient to try the mask mechanism and if that works a PEG could follow

                    Comment


                      #40
                      Hello Dina, we must have been in the same Area 3 seating area

                      We got the patient/hospital transport In/out but only got there after 2 and left after 6 ( a lovely MNDA Volunteer Kathleen? sat with us )

                      Salford / Wythenshaw were discussed at great length and I now understand more what Graham meant about Salford Royal

                      Comment


                        #41
                        Hi Dis,

                        Which consultant did you see? I saw John Ealing, plus his two students. I was quite late going in but it didn't matter as he always gives the time you need. We were also talking about Salford and Wythenshawe and I now have an appointment with Dr Bacari (?) on 03 July about my breathing, before I can have my PEG fitted.

                        It was kind of Kathleen to stay with you. She was telling me yesterday that her husband was one of the founders of the organisation.

                        It's a shame we didn't know we were both going to be at the clinic, we could have had a chat.
                        Dina

                        Trying to keep positive, but not always managing.

                        Comment


                          #42
                          I have the C9ORF72 faulty gene too Dis.' I go to Salford Royal MND clinic too to Amina Chaouch's clinic. My next appointment is a Wednesday afternoon in August. My husband now pushes me from my motability car that's parked with luck in a disabled bay but when not available he parks me in the foyer from the drop off point and then goes to find a parking space. A bit off topic, sorry. 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


                            #43
                            I’m bemused I’ve been offered an inpatient bed at Salford AND at Wythenshaw...does this mean I’m far iller than I feel ?

                            Comment


                              #44
                              Hi Dis;

                              I can only think that they are going to do sleeping tests on you and then see how you get on on a breathing machine.

                              Have you asked about a feeding tube? could it be for that.

                              I would find out what you're going in for.

                              Love 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


                                #45
                                Originally posted by Dis1960 View Post
                                The other problem is an increase in CO2 level in my blood so the idea is to be an inpatient to try the mask mechanism and if that works a PEG could follow
                                Douglas, did you ever get to do the sleep study? I know the date was changed a few times but you had a date of 22nd May but obviously that didn't happen or it did and, based on the test results, they think you'll benefit from using non-invasive ventilation (NIV) and will give you a BiPAP machine, the most popular brand being 'Nippy'.

                                Either way, it's good to have the inpatient back-up when first using NIV and you may even get a feeding tube, given you're there anyway. Have you a choice of hospital or are they two different admissions? I didn't really understand that bit

                                Don't let them forget about your weight loss - that's really important!!

                                Love Ellie.
                                Last edited by Ellie; 30 May 2019, 14:34.
                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                                Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                                Comment

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