Ellie I haven’t noticed any problem with saliva, the cough has been troubling me for some years and the cause never discovered. It has become more problematic since my diaphragm has become weak. I’ve just been prescribed morphine for my breathing but have only tried one dose so far. I didn’t want my head to become fuddled. At the moment I am relying my NIV day as well as night. I’ll try the morphine a bit more regularly x
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shelly21 so empathise with you about those bad days. Do hope getting out on the wheelchair helps lift your spirits. I rejected a wheelchair because wanted to keep my legs going as long as possible, so use a rollator, but can't go far because of breathlessness mainly. You are making me think maybe a wheelchair would be really nice to get further, especially with hopefully better weather coming. Enjoy your ride! xxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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Originally posted by shelly21 View Post... thought that by using my wheelchair i will use my ability too stand etc
Diagnosed 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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Originally posted by Rosemary6NT View PostI’ve just been prescribed morphine for my breathing
Diagnosed 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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Rosemary6NT I'd say it would take a lot more than 1-2ml of morphine to fuddle your brain Rosemary 😉😍😘Diagnosed 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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Originally posted by Ellie View PostShelly, I've been in my wheelchair full-time since 2008, couldn't walk one step to save my life (literally), but I am still weightbearing for transfers - it ain't over 'til it's over... xxDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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Originally posted by Rosemary6NT View PostI can’t walk or move my legs so assumed I couldn’t weight bear… It would save a lot of hoisting hassle…
I am hoisted using a standing hoist but the sling only goes around my torso, so pulling up bottoms isn't an issue - it's a step up from the Molift, battery powered, so no 'lifting' by your partner involved. xx
Diagnosed 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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Originally posted by Ellie View PostShelly, I've been in my wheelchair full-time since 2008, couldn't walk one step to save my life (literally), but I am still weightbearing for transfers - it ain't over 'til it's over... xx
That is amazing to know. Thomas stopped walking safely a year ago but transfers still unchanged. Legs still 4/5 according to physio. We do the transfer tango together. Obviously carers would use the stand aid.
and Rosemary6NT maybe get the OT to try the stand aid with you, you have to be able to weight bear. But have supervision. Thomas my husband can still moves his legs (does leg exercises in bed) just his top half stoop, pulls his balance off. I am a trained nurse with lots of moving and handling experience. But 5 feet to his 6 feet so it is an interesting experience. We are both aware of the risk.
It is like a dance, I support one arm and move as he moves his feet, like a side step.
After realising that I couldn't support Thomas off the floor and 2 ambulance calls (they were lovely), plus the fear of him falling and breaking something. We actually use the commode/shower chair for moving from the bed to chair as new place so small.
Best of luck
Edit to add
Thomas diagnosed in July 2020 with MND of the fail arm kindDonna
Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.
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Rosemary6NT I am experimenting with oramorph too. Have been offered a cataract operation next week on the 9th provided I can lie flat or nearly flat (trying to get the exact angle!) for 20 minutes without NIV (my under the nose mask apparently gets too near my eye). Oramorph helps, but I have to be alert to follow instructions. XxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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Originally posted by Ellie View PostIt's not that long ago that you were using the Molift which requires you to weight bear - was that a struggle?
I am hoisted using a standing hoist but the sling only goes around my torso, so pulling up bottoms isn't an issue - it's a step up from the Molift, battery powered, so no 'lifting' by your partner involved. xxDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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Originally posted by Heather R View PostRosemary6NT I am experimenting with oramorph too. Have been offered a cataract operation next week on the 9th provided I can lie flat or nearly flat (trying to get the exact angle!) for 20 minutes without NIV (my under the nose mask apparently gets too near my eye). Oramorph helps, but I have to be alert to follow instructions. XxDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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