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A big hug to all, especially Denise, I was only joking & being a bit flippant.... no wonder you are struggling a little - it will get better as you settle in. Take care of yourselves xxx
Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.
Morning everyone. I know I go on internet and I look at all the things I need. Simple things. So many bits. Some coming tomorrow βΊοΈ it's realising what is missing when I go to use it.
Set up for Stephens feed different so a lot of faffing about connecting things up. Left a roll of tape and other things in Portugal. Currently has peg pipework attached to his t-shirt with a peg.
Going to pop into small local chemist to get some bits.
No pneumonia jab for Stephen yesterday. One left but someone higher on the at risk list will get it. I was rather annoyed. Looks like he won't get it until annual flu jab. I thought pneumonia was a worry because of the after effects of choking? Not an annual threat like flu?
Chest clinic today. No idea what happened to our promise of transportation to the hospital. π
when i can think of something profound i will update this.
I thought pneumonia was a worry because of the after effects of choking?
The pneumonia jab is effective against community acquired bacterial pneumonia. Aspiration pneumonia is different, that's pneumonia caused by inhaling something into the lungs which should not be inhaled, so no vaccine will protect against that unfortunately. xx
βDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV. β
oh well might have know there would be more than one. always the way. so we all take our masks off and germs will have a field day. did any one go with not wearing a mask and getting a bit of paper to say they had exemption? xxx
when i can think of something profound i will update this.
Everyone had masks on at derriford hospital. Its decided that Stephens breathing is good. All his tests are good. He's happy without his niv so he's not having one. Going to do 2 nights with a thing on his finger and back in 2 months. π
when i can think of something profound i will update this.
I've woken up with a headache so I'd like to swop my hug for a virtual shoulder rub pleaseππ€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.ββββββ
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