Just had the hospice guys round and they have set my mind at rest. I didn't mean the stuff I have said before. ππππxx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
now i am intrigued (is that the right spelling?) what did you say before? what made the difference?
love noseywhen i can think of something profound i will update this. -
Glad someone has managed to set your mind at rest. xx
βDiagnosed 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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I'm not sure what you said before Matthew but I'm so glad you have peace of mind today. π
Love and hugs to you,
Debbie xπComment
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That's good news...I think πOriginally posted by matthew55 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.ββββββComment
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just like matthew to keep us in suspense
when i can think of something profound i will update this.Comment
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Or is that suspenders?
Sorry, I am the hysterical phase of tiredness now, I'll get my coat...
Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.
Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.pngComment
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I was disrespectful to them. Said that they were useless basically. ππ€ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Hi Matthew, you well know I bang on about hospices as a useful resource for support.I think at the time you were having a rough time all round and in and out of hospital
It sounds like you have good carers,an OT. On rehousing list etc.Hopefully this has improved your life a bit.
Great to here the hospice are also on board now.
Best wishes
MaryComment
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Mary C thank you so much. ππππ€xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Sorry to read that Matt. They won't take it personally, I bet they understand when you or others have a rough time, you can say things you don't mean, probably water off a duck's back to them... xxCarer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.
Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.pngComment
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