Thanks to my palliative doc I have two new patches, one behind ear for saliva and one on my back for pain. Plus a brilliant nasal spray called a dyemister. Early indications are excellent! ππππ€xx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
All sounds promising matthew55 ππ»πInitial 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.ββββββ -
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HI matthew55
What does the nasal spray do?
And is one of the patches for mucus?
Looking to dry things up!!!!Donna
Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.Comment
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Both dryingBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Really hope those pain patches work for you mate π€π€π€πβDiagnosed 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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Only tried nicotine patches on Stephen. They are working. Gone from 15+ to 1 or 2. Amazing how these things work.when i can think of something profound i will update this.Comment
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How was your back pain overnight Matthew?Originally posted by matthew55 View Post
And, if you thought you'd finally got your laxative and bowel regimen kind of sorted, the pain patch will probably throw a spanner in the works... πππ
βDiagnosed 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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Damn I did think painkillers were to blame π³when i can think of something profound i will update this.Comment
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Back pain still a problem. Bowels behavingBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Drat π Was that a starting dose to see how effective it was? Maybe the doc would up the dose to see if that worked?Originally posted by matthew55 View Post
I'm sorry, that must be very debilitating for you and sap any remaining reserve you may have. π€π€ππβDiagnosed 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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It only happens in bed. Bed used to be where I had the most fun. ποΈππ€πxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Could the pain relief be causing your falls??π
βββββInitial 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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Yeah but you spend up to half your day in bed, so you don't need that (I know I'm like an annoying earworm, soz hun π) xxOriginally posted by matthew55 View PostβDiagnosed 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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I like the silence at 4am ππ€ππ»xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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