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    #31
    If phoning isn't an option, we should all have email contacts for all relevant healthcare professionals, from the GP to the Clinic/Consultant, and everyone in between. Yes, somtimes others can phone on our behalf but really we should be able to communicate directly with our HCPs, about our health (unless it's not the preferred option)

    For non-health matters, if at all possible, I use the online 'Chat' facility many retail and government departments have, it's usually much quicker than phoning them anyway, and no annoying muzak ๐Ÿ‘๐Ÿ‘
    โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    โ€‹

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      #32
      Originally posted by GillB View Post
      Miraculously my pip has just come through.
      Woohoo Gill ๐Ÿ‘๐Ÿ‘

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

      โ€‹

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        #33
        Ellie yes Ellie, Iโ€™ve done online chat several times with shops xx
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.

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          #34
          The district nurses don't have an email address to give me, the boss admitted they ought and has complained (who to?). She helped me type out what to say when I phoned their number, and it is put in my file to visit me if they get this message. When my tube leaked, I tried it and it worked thank goodness x
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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            #35
            Originally posted by Heather R View Post
            The district nurses don't have an email address to give me
            They probably do, it's just not 'normal practice' to give them out, citing a 'security risk' or some other rubbish excuse.

            I used to get that years ago but now it's standard practice to get email addresses, phone numbers and working hours from all my healthcare professionals (in my health service)

            Hopefully your phone message arrangement continues to work well xx
            โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            โ€‹

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              #36
              I agree with Ellie....every professional has an e-mail address and contact details...they may be reluctant to share ...however of course they should always. It's stressful to try to make phone calls when speech is an issue. ๐Ÿ˜˜
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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