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    #16
    And also to try an get some strength an energy back as I have flail arm .I am taking vitb12 Deanna protocol vit d and cbd oil. I am a smoker an finding it hard to even think about giving it up an i have 4 cans of carling lager each night. Does anyone know if any of these especially smoking an drinking will make mnd progress quicker . I am also taking valium

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      #17
      Sorry, I thought you were talking about cramps or spasms etc.

      I agree with your Neuro that neither whey nor creatine will help. MND is not a muscle disease, but one which stops signals getting to the muscles in the first place.

      Many people have great things to say about CBD oil.

      As long as your breathing isn't too compromised or, if it is, the dose is small and you use NIV, Valium (diazepam) should be OK if your Dr prescribes it.

      Smoking & drinking - honestly, at this stage, if they make you a Happy Chappy, why stop now after the horse has bolted, so to speak. Stopping smoking will probably cause you much stress, which can affect progression.

      Keep doing your research on supplements - check out Theracurmin if it's not in your regimen already.

      Good luck.

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

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        #18
        Hi Happy Chappy,
        How are you doing.
        I've had flail arm for 13 years.

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          #19
          Hello HC & DD
          Flail limb diagnosed in November, had two years of hand and shoulder issues before getting it looked at.
          13 years , can I ask DD , how you are? My cons says I have slow progression , anywhere between 5 12 years
          S
          As long as there’s golf and beer I’m happy

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            #20
            Hi Shaun,
            I had fasciculations in one arm and finger cramps for a year and a half before MND diagnosed in Oct 2006.
            DD

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              #21
              Arms and hands now have limited movement.
              Speech deteriorated during last 3 years.
              Neck weakened during last 2 years.
              Legs are still good.

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                #22
                Hi DD,

                Have you alternative ways of using your PC/tablet given your arm & hand weakness?

                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


                  #23
                  Hi Ellie,
                  I'm still using a regular laptop and iphone although i have eye gaze for when things get worse.

                  Comment


                    #24
                    Great, I was just making sure you wouldn't be left hanging !!
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #25
                      Ellie,
                      Wow, 3660 posts.
                      Do you own this site

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                        #26
                        Originally posted by Double D View Post
                        Ellie,
                        Wow, 3660 posts.
                        Do you own this site
                        Egads, nooo!!

                        Just been around a long time and I am only in the halfpenny league compared to Terry
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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                          #27
                          DD do use your Eye gaze so you get used to it a little.

                          Yes Ellie, know your place.

                          I talk mainly rubbish and you give educated posts.

                          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


                            #28
                            Hello DD,
                            Thanks for letting me, so hopefully I've got a couple of years of golf left, have just enough grip on right hand,
                            Never got faciclations in my arms but they have started in my legs over the last 6 months.
                            Best wishes. Hoping you reach 6,000 + posts
                            S
                            As long as there’s golf and beer I’m happy

                            Comment


                              #29
                              Hi Shaun,

                              As a former lover of golf I would love to play a round with you. My grip is strong but if I took a swing off the tee I would fall A over T lol.

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

                              Comment


                                #30
                                Hello Barry
                                I'm not sure how I'm going to fair this season as my shoulder is playing up but determined to try, can always rely on ibuprofen and codeine to numb the pain, it worked last year.
                                Whilst I was searching for charity golf days I came across challangingmda.org, they give grants for people to experience new challenges and experiences, just thought if you wanted an even bigger challenge after your abseil
                                S
                                As long as there’s golf and beer I’m happy

                                Comment

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