Good idea Ellie. We could have champagne as well π
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Morning, Went to bed at midnight, got out of damp bed for the final time at 4am. Immediately crashed onto sofa and rejoined the world at 8am. Brilliant sunshine followed by clouds. 60mil strong black NescafΓ© taken. Loins girded. ππ€ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx
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Originally posted by matthew55 View Postgot out of damp bed for the final time at 4am.
Treasure the fact you're mobile enough to get up and go to your sofa - long may that last π€π
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.
β
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The arrogance was waiting until it happened twice in the same night. I just need to find a new mum to express milk and I will have completed the circle and become a baby again..Just thirty years before I expected to be. π€πππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx
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Mate, as we discuss all issues here, I hope you don't mind me saying that you probably need to use some type of barrier cream to avoid getting a rather sore groin or undercarriage...
Would you contact your GP to be referred to the Continence Service? IDK if they supply products, but it's worth finding out, and they'll definitely know about barrier creams. 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.
β
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think the nappies now are really absorbent so not as bad as when the kids used them as babies.. stephen hasnt had any problems though i am keeping an eye on him. im surprised how much these pants soak up. matthew likes his aloe vera cream which is probably just as good.
i just had to unblock the toilet. fun, fun, fun. used dishwasher crystals. dish washer has broken down so i thought might as well use them for something.when i can think of something profound i will update this.
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I have a busy Monday in store. These are what I ordered apparently π€πππxx 61s6wA6r1SL._AC_SX425_.jpgBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx
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matthew those are a pain to put on. you will really need help. its really hard pulling them behind and trying to attach the sticky bits to the front panel.
there are some that are elasticated on both sides and just pull on as pants. https://www.amazon.co.uk/Forma-Care-...ZP6GBZ2/ref=sr
these are so much better and you should be able to do these on your own.when i can think of something profound i will update this.
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