Open letter
This open letter shows the wide age range of those diagnosed with MND. Tragically long.
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This open letter shows the wide age range of those diagnosed with MND. Tragically long.
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. -
Thanks for sharing it helps to demonstrate we are truly not alone. 👩👩👦👦👩👩👧👦👨👩👧👧👨👩👦👦xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx -
I’m in there. Anybody else? Think it’s being handed in to 10 Downing Street tomorrow by Doddie Weir.Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.Comment
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Why give it to a bunch of over privileged tossers who consider the great British public as cattle?Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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I'm in there...
I think the more it's pushed into the political arena the better. We all know it's about £££ & votes. However MND clearly effects people of all ages....who could still be working. So additional investment in finding a treatment that works will eventually be financially beneficial to the state. It's all about ££££s
✊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.Comment
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Thanks for sharing that Linda. I've asked if can get involved any way xComment
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Bless you for posting the link to the open letter, Linda. I've added my name just in time.
i agree with you - the age range is shockingly wide.
Doug
Diagnosed April 2017Comment
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Doug Carpenter it is shocking isn't it...and the more the general public are made aware the better. Personally I was fairly ignorant until diagnosis. However if more funds are needed then people need to know....it's more common than they think....sadly.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.Comment
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I think you can still signInitial 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.Comment
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Still open to sign , just checked itAs long as there’s golf and beer I’m happyComment
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Just added my monica 👍😁😚🤗xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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I didn't see any place where you could sign Linda. But l agree it is about dosh and votes. Perhaps we should act more concertedly. And make intentions known. And involve our friends and friends of friends. Votes matter to them x
Last edited by Gordan1111; 20 September 2021, 15:47.Comment
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I'm in there too ! It makes it seem more personal that we can add a few details about ourselves but reading it is heartbreaking! Rob Burrow, Doddie Weir and others are handing it in at Downing Street tomorrow I think. Hopefully there will be publicity to raise awareness x❤
Thank you for sharing this LindaB xxLast edited by Deb; 20 September 2021, 16:12.Comment
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Gordan1111 I think it's still open if you follow the link.
You're right most disability rights groups are strong and a force to be reckoned with. Our voices need to be heard ✊👍 (ironic as our physical voices become lost to MND)😞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.Comment
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Signed.Comment
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