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    Hello from Rosemary

    Hello everyone, I'm just introducing myself. I was officially diagnosed with MND in May 2021 although I self-diagnosed in February. When my GP said she couldn't confirm or deny my self-diagnosis I went through a hellish few weeks until I had the relevant tests to confirm. Then I calmed down, going through a bit of denial I think, but gradually the reality is settling in. I have an electric wheelchair now and Molift for transfers. We are waiting for conversion of bathroom to wet room and washer/dryer toilet if we can get one. Builders are busy until next March! I'm taking Riluzole and am participating in a feeding study called Opticals run by Sheffield Universty and Radcliffe Hospital Oxford. I'm very lucky to be in Milton Keynes where there is an extremely good set up for MND with specialist nurse co-ordinator and Neurological physios. Recently i've been having trouble with choking on tiny amounts of liquid which triggers terrifying laryngospasm. I use an LVR to assist my cough and my speech is becoming a bit more difficult. Apart from that I'm fine lol!

    #2
    Welcome Rosemary6NT to as nice a bunch of people you'll find anywhere. Some even know a bit about living with MND/ASL so advice, support and help is abundant. I have to say you seem to have the right attitude and I think you will be a real bonus to our family. Stay Strong and Stay Sane. πŸ˜‰πŸ€”πŸ˜˜πŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #3
      Thanks Matthew55. I've no doubt I will be asking many questions. I'm trying to familiarise myself with this site and the folks on it. I shouldn't have waited so long before joining. xx

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        #4
        You're here now, that's what counts. Ask away! πŸ˜πŸ˜˜πŸ€—πŸ˜xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #5
          Rosemary6NT A warm welcome to the forum Rosemary - it's never too late to join us πŸ‘πŸ˜˜

          You seem to have your head screwed on, that's a great plus in both dealing with, and living with, an MND.

          Given your swallowing issues, has the subject of having a feeding tube fitted been raised?

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

          ​

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            #6
            Rosemary6NT welcome to the forum. Look forward to reading more of your posts & getting to know you.
            I've found it a great source of info and support and I'm sure you will tooπŸ€—πŸ‘πŸ»
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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              #7
              Hi Rosemary,
              Welcome to the forum and you sound like you are getting organised.I hope you can get builders before next March as that’s such a long time to wait.
              Hope you have been referred to speech and language team and considered voice banking?Also my experience is my speech is be o NIV more difficult too so SALT team set me up with text to speech App( predictable 6).I am trying to get used to it before I need to use it..better to be prepared.The SALT or Nutritionist might need to do swallow assessment?given difficulties you are having swallowing liquids.

              Hope to hear more from you soon.
              Best wishes
              Mary

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                #8
                Hi Rosemary6NT - I had/have larangoaspasm. Terrifying innit. I find if I take little sips it helps. And am aware of what am doing. Take care of yourself xx

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                  #9
                  Originally posted by Ellie View Post
                  Rosemary6NT A warm welcome to the forum Rosemary - it's never too late to join us πŸ‘πŸ˜˜

                  You seem to have your head screwed on, that's a great plus in both dealing with, and living with, an MND.

                  Given your swallowing issues, has the subject of having a feeding tube fitted been raised?

                  Love Ellie.
                  Thanks Ellie. I have seen a dietician and a referral for a PEG is under way...

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                    #10
                    Originally posted by LindaB View Post
                    Rosemary6NT welcome to the forum. Look forward to reading more of your posts & getting to know you.
                    I've found it a great source of info and support and I'm sure you will tooπŸ€—πŸ‘πŸ»
                    Thanks LindaB

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                      #11
                      Originally posted by Mary C View Post
                      Hi Rosemary,
                      Welcome to the forum and you sound like you are getting organised.I hope you can get builders before next March as that’s such a long time to wait.
                      Hope you have been referred to speech and language team and considered voice banking?Also my experience is my speech is be o NIV more difficult too so SALT team set me up with text to speech App( predictable 6).I am trying to get used to it before I need to use it..better to be prepared.The SALT or Nutritionist might need to do swallow assessment?given difficulties you are having swallowing liquids.

                      Hope to hear more from you soon.
                      Best wishes
                      Mary
                      Thanks Mary C. I have seen a SALT and talked about using voice banking. My voice seemed OK at the time so I have been lazy following it up. All I have is a few banked swearwords but I'm finding pronunciation harder so need to get on with it. I've been dithering about which application to use...

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                        #12
                        Originally posted by Rosemary6NT View Post
                        I have seen a dietician and a referral for a PEG is under way...
                        Oh that's good to hear. It takes so much stress away once it's done πŸ‘πŸ‘

                        Let's hope you're not waiting too long 🀞 xx

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

                        ​

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                          #13
                          Originally posted by Gordan1111 View Post
                          Hi Rosemary6NT - I had/have larangoaspasm. Terrifying innit. I find if I take little sips it helps. And am aware of what am doing. Take care of yourself xx
                          Thanks Gordon1111. It's horrible, I feel like I'm going to die . My GP thinks it is spasticity of the throat muscles, I don't know if that's something different. I'm convinced it is laryngospasm though.

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                            #14
                            I used to get it when I drank to much alcohol. Now I think when take a drink of fluid I think it's accompanied by swallow reflex but if take little sips it's does,'nt come on so much xx

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                              #15
                              Originally posted by Rosemary6NT View Post
                              It's horrible, I feel like I'm going to die . My GP thinks it is spasticity of the throat muscles, I don't know if that's something different. I'm convinced it is laryngospasm though.
                              I get them regularly and they haven't killed me yet πŸ˜‰πŸ˜

                              The key is to relax, not easy when you think you're dying, but once to relax, maybe hold your breath for a few seconds, it passes much quicker. It's learned behaviour, take practice, but you can do it!

                              My family and carers know to sit me up if I'm lying down but otherwise to leave me alone and to give me physical space. They know it's safe to come near me once I've stopped braying like a donkey πŸ˜„

                              Both you and the GP are correct, btw. xx
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              ​

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