I got the catheter. First nurse couldn’t manage so called another. She did my blood pressure: ok; did my oxygen and pulse: ok; temperature: ok. She said that she can see that I’ve still got a range of movement. She’s coming back next Monday with a tap to add at end of catheter tube so don’t have to wear a bag when go out. She’s also bringing barrier cream for me to apply to avoid bed sores. We’ll now have more freedom to go visiting and days out xx
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That's great Lynne K Does it feel comfortable so far?
No more worrying about not being able to get to a loo 👍👍👍🤗😘Diagnosed 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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The bag is strapped to my leg near to my knee so that the plastic tap thing and bit of bag comes below my dress. It’d be embarrassing but I got Steve to get out one of my late scarves (a soft cotton or rayon , off white with purple and green butterflies on, it’s my favourite) to put over my knees.
I can check to a shorter tube so that the bag sits underneath my dress but they were saying that it could be uncomfortable with parts of the tube that stick out slipping between my upper legs. But I’m going to ask next Monday. Nothing ventured nothing gained xxALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.
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Originally posted by matthew55 View PostI sometimes forget I have one and feel myself going, for a brief moment of panic. 😬🤪😆😁xxALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.
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Yes, it'll be a learning curve for you Lynne.
You can try the higher bag and, if it doesn't work out, go back to the lower bag - or maybe have spares of each type so, if you were going out, use the above-knee bag? xxDiagnosed 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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Originally posted by Ellie View PostYes, it'll be a learning curve for you Lynne.
You can try the higher bag and, if it doesn't work out, go back to the lower bag - or maybe have spares of each type so, if you were going out, use the above-knee bag? xxALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.
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