I find life goes on no matter what happens to us as individuals. The trick is to face it with a smile. ππππxx
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Mindset - can it help?
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Originally posted by Graham View PostI have been threatened by the MNDA yet again. Mindset is important but us sufferers often face the sternest challenges from our loved ones and charities set up to protect us. I will be following this up with the Police and the media if necessary.
We have not and will not be threatening you, all we ask is that you follow our Forum Guidelines, which you agreed to when you became a member of the Forum. As explained in our messages, your recent comments have been upsetting other members so we have removed these and will continue to do so for any future comments which upset other members.
Many thanks,
Forum Admin
Our working hours are Monday to Friday 8:30am until 5pm
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Originally posted by EvelynMW View PostNoone has told me that i have a specific diagnosis, but i'd guess the 3 -5 year, ALS as i have a known wonky gene.βDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
β
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A very thoughtful post. I know I canβt beat this disease, but Iβm pretty sure I can use my best endeavours to plan and prepare, and do everything I can to try to keep one step ahead and to enjoy what remains to the full. I know Iβm going to have some very bad days and dark thoughts. I also know that positivity may have only a marginal effect on the outcome, but I want to try to do my best for me, for my grown up children and my precious young grandchildren. I also want to try to spare my wife the worst of experiences and poor behaviour on my part if I can avoid it. Iβd like them all to remember the good times, and also that I tried hard. Itβs easy to say all this now, but itβs what I really want to transpire.Last edited by PeterPan; 14 July 2021, 17:18.Diagnosed October 2020 - See my blog at https://www.myneurodiary.com
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I can only say that, having experienced only tiny changes in the same bodily parts over the last year, i know how fortunate i am, and how lucky i am to have such a positive atttude, as Ellie says - long may it continue!Mum died with MND in 1979 β My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.
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Originally posted by matthew55 View PostAt the end of the day we are only human
βDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
β
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Originally posted by matthew55 View PostI'm far too modest to admit that
βDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
β
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Rachel (MNDA),
There are now 2 issues.
The hate post on the 'Call de Kops' thread which was humour between me and my carers! And the MNDA's subsequent conversation that disregarded the hate post.
The untimely passing of yet ANOTHER friend. Does the MNDA ever read posts that are clear cries for help?
Copyright Graham
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Sad to say Graham you are dealing with paid employees and not mental health professionals. I have had similar problems here in the past. It's really not worth the blood you'll loose banging your head against the wall my friend. ππ€π€π§xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx
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Originally posted by Graham View PostRachel (MNDA),
There are now 2 issues.
The hate post on the 'Call de Kops' thread which was humour between me and my carers! And the MNDA's subsequent conversation that disregarded the hate post.
The untimely passing of yet ANOTHER friend. Does the MNDA ever read posts that are clear cries for help?
Just to confirm this isn't Rachel, she works in our MND Connect team and isn't an Admin.
We are here to support you and we were also extremely sad to read about Barry. Unfortunately, as we have mentioned before, your recent comments have upset other members and gone against our guidelines.
In our latest messages we have encouraged you to contact our Connect team for support and we will continue to do this.
If you would like to discuss this anymore please message us as we would like to let this thread go back to its original purpose for all members.
Many thanks,
Forum AdminOur working hours are Monday to Friday 8:30am until 5pm
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