Got my "oxygen warning" wrist band today. Wearing it proudly.
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This gallery has 1 photos.Hi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
Still wondering what the future will bring. -
Rocking it Eddie, blue is your colour πππβDiagnosed 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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I thought you meant you were pregnant! π€£Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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I had one for Stephen but the writing faded away.when i can think of something profound i will update this.Comment
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WheelsOfSteel now you're really in the gang....π€π»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.ββββββComment
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Sounds like a cue for the Stones (Or Buddy Holiday) and βNot fade awayβ. Well as you expect β¦.. β Iβm going to tell you how itβs going to be β¦β¦β¦βOriginally posted by denise View PostRichardComment
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I'm singing along. Dancing and giving it my Jagger impersonation. Frightened my cats they are now under the floor boards. πwhen i can think of something profound i will update this.Comment
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Eddie, Iβve had one for about eighteen months and been wearing it since xALS 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.Comment
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Oooh, how do you get one of those?? Feeling deprived!Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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Rosemary6NT They're available from MND Connect.
MNDConnect The link to order the MND Alert Wristband is missing from the page on the main website, as you can see:
"MND Alert Wristband
A wristband you can wear at all times to alert medical staff that you have MND. The band includes an oxygen caution alert and a web link for professionals. Order the wristband from our MND Connect helpline using this link."
But there is no link. xx
βDiagnosed 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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Thanks Ellie I'll have a look in to the missing link and have it fixed.
Rosemary6NT If you would like an alert wristband then please send me a private message or email us at [email protected] and we'll get one sent out for you.
Best Wishes
Rachel
MND Connect AdviserMND Connect
Contact us on 0808 802 6262 or at [email protected]Comment
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Ellie and MNDConnect thank youDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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Mines in the post! ππππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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It's just arrived! πππ€πxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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I'm wearing mine after being given oxygen for my PEG operation. I queried it at the time, but was told, no, oxygen is good! Afterwards when I queried it with my respiratory physio, she said it was okay because I was being "monitored". I am still a bit sceptical about this, having felt so ill immediately after the op. I would like to better understand when it may be okay to use oxygen xDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!Comment
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