We have a sea breeze so it's just right. π
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when i can think of something profound i will update this. -
Good morning folks ππ
Blue skies sure help any blue feelings ππ
The new, purpose built wetooms here aren't fit for purpose ππ Apart from us almost getting heatstroke in the bathroom this morning, the shower chair/commode doesn't fit over the loo and the place floods from the shower!!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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Oh dear π³ that's very poor.Originally posted by Ellie View PostStarted limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive πΊ.Comment
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Isn't it... I mean it's not exactly rocket science π€¨Originally posted by Tabbycat View PostβDiagnosed 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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Oh I remember some wonderful times when Stephen fitted our bathrooms. He did everything the electrics, tiling the lot. It was the plumbing that was the most interesting. Him turing the water on and me checking for leaks. Oh did he swear. It was as if I willed things to leak. Like I'd do that. So I got to turn the water on and he checked for leaks. I couldn't always hear him tell me to turn it off!
The commode we have doesn't fit over the loo. I don't know what or if they have a plan for wet rooms.
π€when i can think of something profound i will update this.Comment
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denise The commode we have doesn't fit over the loo. I don't know what or if they have a plan for wet rooms.
I thought ours didn't until our OT came and adjusted it to make it taller. Might be worth asking. We now have a new tilt in space shower chair, top of the range apparently but I've had to rake all the extra fancy bits off of it to fit it through doorways- but it fits over the geberit loo - but not in the recline position.
Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze
Sense of humour intact throughout.
Sadly passed away peacefully 2/9/22Comment
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Doorways and hallways are definitely a challenge. Come to think of it most things are then they become the new normal.
Morning everyone. I've been awake for an hour at least. It's very warm and those seagulls are really making a noise.
when i can think of something profound i will update this.Comment
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Morning everyone. For some reason I hadn't been on this thread a few days. Good to catch up and watch the comments change as the temperature rises!!
I'm going to try to get out of bed today and enjoy at least some sunshine. I hope you all enjoy the day xDiagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!Comment
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Morning team!
An admin day for me today. Sorting the paperwork for my medical retirement pensions.
Watched a bit of the wheelchair tennis. Hard work!
Hope you all get to enjoy a bit of sunshine.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.Comment
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Morning everyone. How annoying when things donβt fit or work properly. My outside doors donβt open and close properly. Today I am going to be holed up in bed with the ventilator and fan on, hoping for cooler weather! XxDiagnosed 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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You should see the state of some of my door frames π«£π«£π«£Foxes Never Quit πComment
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Are you poorly Heather or is it merely to keep cool? xxOriginally posted by Heather R View PostβDiagnosed 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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Good afternoon folks ππ
Had physio this morning in the gym - wish it didn't have floor to ceiling mirrors π¬ - saw the Consultant, had lunch and am 'on view' later to two new doctors: today is New Doctors day here, bad day to get ill πβDiagnosed 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 for asking Ellie. Last heatwave I felt so bad with horrid headaches, feeling very sick, very high blood pressure, etc, so I was really dreading this one. But my son has just bought me a small air conditioner unit for my bedroom and itβs made such a difference, what a relief. XOriginally posted by Ellie View Post
Diagnosed 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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Heather R we have today bought a cheapish desktop fan which turns. Got it up on a box to circulate air around lounge and really made a huge difference. Would probably notice it more if my lab wasn't sitting directly in front of it ears flapping
Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.Comment
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