Falling over and getting knocked out. Waking up in Hospital with no way of communicating. Just saying. π₯πππ€xx
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Originally posted by matthew55 View PostFalling over and getting knocked out. Waking up in Hospital with no way of communicating. Just saying. π₯πππ€xxDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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Originally posted by matthew55 View Postno way of communicating. Just saying.
Seriously though, I got my wristband from the MND Association.
Mostly to warn about oxygen, but it does say "ALERT! I have MND"
WIN_20220218_15_28_58_Pro.jpgHi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Still walking and talking, and wondering what the future will bring.
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Iβm a perfectionist and highly independent. Any situation where Iβm not in control of my destiny is a real problem. I really am the worst type of person to get MND. So frustrating!
Falling over and ending up helpless in hospital would be a nightmare for me too.Diagnosed October 2020 - See my blog at https://www.myneurodiary.com
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matthew55
I worry about how vunerable Thomas is. I fell outside just popping out to the car (slipped on grass and only stunned)
but if Thomas is reclined with his feet up. He has no way to call for help.
As no use of hands and he needs to press the buzzer with his foot first before calling via voice control. (Possum system)
Maybe we need Alexa or Google Home.
I have a Carer Card ( need to check purse and phone again to make sure) so if something happens to me, they know someone is vunerable at home.
I also have ICE programmed into my phone
ICE In Case of Emergency and it phones my mum
So if you are found ambulance staff phones the ICE number
I am ICE for my mum and dad and they have phoned my when dad fell in the street.
Medical Alert Bracelets have a piece of paper in them with more details on them.
Just brain storming
I worry about Thomas in the hospital and mum has said she is never going back if she can help it.Donna
Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.
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https://www.surreycc.gov.uk/communit...-bottle-scheme
This is Surrey however I think lots of areas use this scheme matthew55 πππ»Initial 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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matthew55 Yes, Wigan have that Message in a Bottle scheme too.
"Personal emergencies
If you have a sudden illness or accident you can be prepared by using the Message in a Bottle scheme. You can keep your medical and contact details in a special container in the fridge so that emergency services know where to find them."
But I get what you mean about on a ward - the lack of any means of communication leaves us totally vulnerable, it's my greatest fear too.
You're relying on transfer of pertinent information from the Emergency Services to A&E, and from A&E to the ward, not to mention shift handovers.
We just have to hope that staff cop on and bring alphabet boards/communication sheets when first faced with an ALSer unable to speak. Once they know, those sheets can be left with you.
The PALS department is only useful if you can ask for them in the first place... π
π€π€ππβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
β
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