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    My first post

    Hi all,

    I registered in June but only now feel I need to introduce myself.
    I was diagnosed in Jan 20 and have been relatively ok up to a month ago still managing golf twice a week.Since then my swallow and speech has deteriorated quite dramatically, so have just had a feeding tube fitted last week in Royal London hospital. My wife and I are getting on ok with the feeding process so far.

    Hopefully my energy level will improve so I can have a final go at golf. I have got a lot of inspiration from the forum and will read/use it even more.

    Nick

    #2
    Hi Nick & Welcome to the Forum.

    Glad the feeding tube procedure went well and it’s getting use – hopefully the extra calories will give you an energy boost and get you out on the golf course again. Have you a daily calorie target?
    MND is a hungry disease and people seem to do better with a higher calorie intake, so don’t worry about gaining a kilo or two!

    Did you have your breathing tested recently/before the feeding tube procedure?

    Have you had any help from a Speech Therapist re speech apps/voice banking?


    Nice to meet you!

    Love Ellie.

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

    Comment


      #3
      Hi Ellie,

      Thankyou for the warm welcome.

      The hospital have given me a daily target of 2200 calories with feeding tube being the core element. This looks quite difficult at the moment, but I have only been out the hospital two days!

      I have excellent support from the local hospice MND coordinator who has got things to happen for me. I have a ventilator which I use at night so that stops the headaches in the morning.

      For speech I have voice banked with Acapella and am I process of getting the software released so I can use it in anger.

      Generally things are well organised for me at my current stage of MND.

      Thanks

      Nick

      Comment


        #4
        I'm sure you'll soon be hitting 2200cals!

        Yes, you are well set up Nick 👍 Having a good coordinator definitely helps take some stress off you and your wife.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          Hi Nick

          A warm welcome to the Forum.

          It sounds like you've got good support organised, which is great.

          Well done for banking your voice already. Once you've downloaded your voice file, you'll need some text-to-speech software to run it through. Many folks here use Predicatable. Your Speech and Language Therapist should help you obtain it. The MNDA may help too.

          All the best

          Doug

          Comment


            #6
            Hello Nick and welcome.

            Sorry to hear that your symptoms are worsening but if you can achieve your target calorie intake then this will help you. There are several speech apps available and it is a question of which one you find easier to use. I’m a fan of SpeakUnique.

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

            Comment


              #7
              Hi Doug and Barry,

              Thankyou for the welcome and software options to focus on for speech.

              I will see which one works for me.

              I am also waiting to see if MNDa can help me.

              Kind Regards

              Nick

              Comment


                #8
                Dear Nick,
                I was diagnosed with Progressive Bulbar Palsy in Jan 2018. I have been "lucky" enough to still be able to swallow but have lost my speech. I use a boogie board, I find that easier than fiddling with the computer. I had a tube fitted on 12 Aug 2019 but so far have not needed to use it (other than a water flush through once a day.) I am managing to keep my weight constant.
                I am not a golfer only Bridge, but can't play that at the Club because of the need to be 2 metres apart. Can play it on the computer but that to me is second class.
                Keep your spirits up. Best wishes

                Comment


                  #9
                  Hi Stonehengeman,

                  Thankyou for a different perspective on communication once I lose my voice. Is the boogie board just a replacement for pen and paper?

                  Or can it also convert what is written from text to speech? (They look too cheap to do this)

                  Thanks
                  Nick

                  Comment


                    #10
                    No Nick, it's a write and erase board, no speech output. They're handy little things for those who can grip and hold a pen.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Hi Ellie,

                      Ok, thanks for the clarification.

                      Kind Regards

                      Nick

                      Comment


                        #12
                        Good morning Nick,

                        Welcome to the forum I can sympathise with the wish to do something one last time.

                        I used to do a lot of cycling, in fact I was probably on the back of my parents tandem before I could walk! So not cycling since not being able to grip the handlebars has actually turned me off all sorts of other things that I might do to get somewhere near to two or indeed three wheels Including riding on a set of rollers in front of the TV screen. So I've lost something that was second nature to me.

                        I'm pleased you have your care sorted out and pleased to see that others here have already begun to help you – do ask if you need anything
                        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


                          #13
                          Hi Andy,

                          Yes it’s tough on top of all the other things with MND to lose a life long participation sport. You clearly enjoyed your cycling.

                          Hopefully, I will have enough energy and coordination in the next few weeks for my return to golf before the weather breaks.

                          Kind Regards

                          Nick

                          Comment


                            #14
                            Nick
                            I am also a newby and just want to say Welcome.
                            Wishing yoiu peace and comfort
                            Richard

                            Comment


                              #15
                              Hi Richard,

                              A warm welcome to you aswell.

                              Nick

                              Comment

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