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    #46
    Supporting people with MND in making decisions about having a gastrostomy feedingtube

    Post #16.

    Please remove it.

    Your threatening PM has been captured and will be forwarded to the police.
    Copyright Graham

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      #47
      Graham this is getting very uncomfortable especially the mention of police. I'm ex police and I've not seen any evidence of a crime.

      Obviously you are not happy with a person's comments.if that comment breached the owner of the forums rules namely mnda,then surely action would have been taken.


      Last edited by shelly21; 20 October 2021, 01:40.
      Diagnosed May 2021 bulbar onset als.

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        #48
        As just a lurker for the past year to learn more about this disease, and I know I don't know you nor you me, but I believe you're possibly overreacting.

        From the post you now reference, which I have read several times prior to making this post to be sure my interpretation was reasonable, I believe Matthew was referring to the fact that a nasogastric tube (nose) would be the only option for nourishment IF you decided to go that way. Personal choice that I do get either way one decides. I chose a PEG.

        His other reference seemed to indicate that PEG feeding was better for your teeth than eating by mouth. Could be?

        Just my opinion of course but felt I had to speak up because it does not seem to attack you in any way. It just states the obvious from a certain decision that some may make and regret and change their mind about with NG being the only option after a point.

        May be irrelevant to your choices which are respected by me as they should be by all but is relevant to subject of thread.

        If there is a PM that threatens harm that is regretful as I am a fan of reading this board and that includes posts from you both.

        His are generally to uplift other members it seems. Seem to be said with his truth, humor, and occasionally written in a way that can be taken differently by some...

        This just seems to be elevating into a bad situation that may have started from just a misunderstanding of ones words. Have been reading long enough to have seen plenty of posts from both.

        Regards from another MND sufferer that won't be here posting in 11-12 years. I commend you for staying engaged as no form of this disease can be considered "a good thing" and it does need advocates to raise awareness. No harm meant on this end.
        Last edited by Boxedin; 20 October 2021, 02:28.

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          #49
          Spot on I was referring to being fed through the nose. No offence much less harm intended. Point of fact I have tried to support you Graham 🙏✌️🤘🤗xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #50
            I think a bit like text messages and e-mails posts on here can be misread or misinterpreted. Hopefully you can have a private chat (albeit more messages between you) and resolve the misunderstanding?

            ​​​​​​I do hope so as you both seem like really nice people living with extremely difficult challenges as are so many in the MND family👍❤

            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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              #51
              Morning all,

              Having read through this thread and the other thread, Supporting people with MND in making decisions about having a gastrostomy feeding tube, we can see that a post has been deleted by Matthew.

              If any member is unhappy with a post and feels it breaks our Forum Guidelines then please do flag this to us and we will investigate as soon as possible. This is the best way to handle the situation. As others have stated sometimes written messages can be misinterpreted and we are sure no-one would ever mean to offend another member on the Forum.

              We would advise this conversation is stopped here and if anyone has any further comments please message us directly.

              Many thanks,

              Forum Admin
              Our working hours are Monday to Friday 8:30am until 5pm

              Comment


                #52
                Better late than never 😁🤗😍😘xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment


                  #53
                  Originally posted by matthew55 View Post
                  Better late than never 😁🤗😍😘xx
                  Hi Matthew,

                  As we state in our guidelines "We like to step back from the forum and let members have some management and control over the forum content. We do not approve every post before it goes out. "

                  If you or any member has a concern please message us directly or flag a post and we will look into it as soon as we can around our other work commitments.

                  It seems best that we close this thread.

                  Many thanks,

                  Forum Admin
                  Our working hours are Monday to Friday 8:30am until 5pm

                  Comment


                    #54
                    Hope that sorts the issue out as not pleasant to read posts are being forwarded to the police.I agree if there are issues with content of any posts then MND forum admin will try and sort it out.
                    Wishing Members a good day
                    Mary

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