Reading the posts it all sounds pretty desperate.
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Josephine A warm welcome to the forum Josephine.
No, ALS isn't an easy one for sure, but you'll find lots of help, support, advice, love, laughs and life on the forum.
Love Ellie xxโDiagnosed 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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Hi Josephine
Welcome. Lots of lovely people here to share with.
Love and hugs denise xxxwhen i can think of something profound i will update this.Comment
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Josephine sorry you're reading concerning posts. Please don't think your care will be poor. There are lots that have great departments but it does seem that certain areas of the UK are better than others.
XDiagnosed May 2021 bulbar onset als.Comment
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Welcome to forum. Yes we face many challenges....the resourcefulness of forum members is however awesome๐๐๐Originally posted by Josephine View PostInitial 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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Josephine ah Iโm sure you must feel pretty desperate just being diagnosed, it is daunting initially. My husband was diagnosed in October 2017 so almost five years ago. He is still mobile. Swallowing relatively well. Speaking well. There are many good days, and you will have them. Hoping you will feel ok and have a lot of support from family and friends.
This forum offers support, advice and really anything goes.๐ Thinking of you xxComment
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