I hope that you have a nice afternoon Evelyn, Lynne x
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Originally posted by EvelynMW View PostI cant help wondering why we only see posts from very few. Should we be encouraging involvement, do we even know if they ever log in? Why join, then do nothing? Am I just too nosy for my own good? ProbablyInitial 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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Originally posted by LindaB View PostTook me three days and as many e-mails before I could post or reply. Maybe people could be put off if a similar experience
Perhaps Admin_MND could clarify this. xxDiagnosed 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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LindaB So sorry to read that you are/were terrified - I am trusting that you have now come to terms with it. Sorry that it took so long to be able to post too! Not the best start, in more ways than one!Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.
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EvelynMW I think coming to terms with the diagnosis may take time- if at all. It's about grief & loss & I guess that's part of everyone's story. Felt in turmoil but soon I'm sure I'll rebalance. CBD oil seems to help. 🌱
Yes the IT nearly defeated me lol but I'm here now🎉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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Obviously if the registration happens in the evening or over the weekend we won't necessarily see it until the next time we're logged in, so there could be a slight delay but hopefully we do try and keep on top of everything where possible.Our working hours are Monday to Friday 8:30am until 5pm
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