I have good news, CHC funding has been approved in full. The virtual meeting was a nightmare though with me coughing, choking, crying and needing lung clearance throughout. It was a genuine stellar performance ๐ข.
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Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily. -
Sorry you had such a horrendous ordeal๐
But whoop whoop whoop ๐พCHC funding๐๐Initial 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.โโโโโโ -
Good for the funding. At least they could see what you have to deal with. I just wish you didn't ๐when i can think of something profound i will update this.Comment
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Great news Rosemary6NT It must be such a relief to have it all approved.Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive ๐บ.Comment
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Brilliant news ๐ฐ๐๐ค๐xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐ค๐๐ค๐xxComment
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Very glad that has been sorted for you.Comment
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Rosemary6NT That must be a huge relief for you both, great to hear ๐๐
I hope asessors were contrite at putting you through such an ordeal. ๐ค๐โDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Good to hear Rosemary ๐Foxes Never Quit ๐Comment
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Rosemary6NT so pleased you've got funding but so sorry you had to go through such an ordeal to get it xxx๐๐คComment
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Rosemary6NT
What an ordeal to go through but pleased you got funding. I hope things improve for you xDiagnosed 3rd November 2021 Bulbar OnsetComment
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Thank you all xxDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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& Rosemary6NT there's no ceiling on costs if it's CHC funding...have to meet ALL assessed needs๐๐Initial 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.โโโโโโComment
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Thatโs good to know xxOriginally posted by LindaB View PostDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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