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Hospice and Palliative Care for People with ALS

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    #16

    Originally posted by Johnny5 View Post
    Giving negative and false information to forum members about this webinar is negative.
    I expect an apology for that slanderous comment, thank you.

    I am an ardent supporter of hospices and of palliative care and the fantastic services they offer and have been under their care for over 14 years. Any regular forum user knows that I am quick to suggest new and struggling members make contact with their local hospice and/or palliative care team, if not an integrated service.

    Nobody who knows me can accuse me of negativity towards hospices.
    ​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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      #17
      Johnny5 the USA & UK may have different approaches to Hospice & Palliative Care. That's not to say your webinar may not be of interest however may not reflect the UK experience. Therefore forum members choosing to view need to be very clear about that. I wouldn't want anyone to be 'put off' being supported by their local hospice team. I've found their support invaluable.
      Also useful to point out to those choosing to view that the content could be 'difficult' to hear.

      Thanks for the link. Useful to see how things are done the other side of the pondπŸ‘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. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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        #18
        Originally posted by Ellie View Post

        I expect an apology for that slanderous comment, thank you.

        I am an ardent supporter of hospices and of palliative care and the fantastic services they offer and have been under their care for over 14 years. Any regular forum user knows that I am quick to suggest new and struggling members make contact with their local hospice and/or palliative care team, if not an integrated service.

        Nobody who knows me can accuse me of negativity towards hospices.
        100% Ellie I've read many posts from you reassuring forum members about hospice/palliative care and singing the praises of the support given. Never ever ever a negative word!!!!!
        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.​​​​​​

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          #19
          Hi Johnny
          your attitude is rather aggressive you need to chill. We discuss things here like we are in a safe, friendly place not in a boxing ring.
          Cool it and share your thoughts in a nicer way then we might respond more favourably. Keep it up like this and you will be talking to yourself.
          when i can think of something profound i will update this.

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            #20
            Originally posted by Johnny5 View Post
            I did not feel it was badgering Bowler. I was replying to negative posts on the issue. MND and ALS Associations are mostly in agreement with hospice and palliative care to the best of my knowledge. Giving negative and false information to forum members about this webinar is negative. Meanwhile, the opportunity to review all of this information from the comfort of your home is beneficial to those of us dealing with this issue.
            I was trying to be subtle which obviously failed so I ask directly have you a business interest in a hospice or the webinar hosts.

            Regarding your attack on arguably THE most respected / loved member of the forum I simply say you offend Ellie and you offend me.

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