Ellie .Hope respite goes well for you and you can relax and enjoy all the therapies. You're right about carers needing a break too but I'm sure your hubby will miss you xx
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We shall see πOriginally posted by Deb View Post
You're right though Debbie, the break does rejuvenate him. 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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I need to be rejuvenated. My bones ache. π©when i can think of something profound i will update this.Comment
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Brand new 'An American Horror Story" is back on Disney plus, best 7.99 I spend a month. New show every Wednesday. A great reason to keep those pills in the cupboard a bit longer. πππ€£πxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Now that's right up my streetπ±π±Originally posted by matthew55 View PostInitial 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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And a beautiful evening here 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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πmy granddaughter visited today - she brought meals she has cooked for me and frozen. What a thoughtful young woman she has become. She also put up two pictures for me. My reason to be cheerful todayπInitial 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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The apple doesn't fall from the tree LindaB 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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Thatβs great Linda. What a fab granddaughter youβve got, Lynne 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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My reason to be cheerful today was we had a lovely afternoon by the river in Stratford Upon Avon.The sun shone as we enjoyed watching barges going through the lock and a bit of people watching.
A beautiful drive through the countryside left me with a warm glow.
Best wishes
MaryComment
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Thats so lovely Linda.. you must be so proud of her ! π
My son or his wife send me a video or photo of our grandson every morning and it keeps me smiling π πππ€xx
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Mary C You put the rest of us to shame Mary with all of your gallivanting - good for you π xxβDiagnosed 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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That sounds like such a lovely day Mary πxxComment
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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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A reason to be cheerful.
Hi all , Sunday has always been a day of rest and a family day for husband and I when possible .I used to start the day by going to Catholic mass at church.These days I watch it on line which is lovely as I can watch it from a choice of churches.My deacon brings Communion fortnightly.Planning to get back to my own church which only does mass on Saturday evenings due to covid consequences.
I have two friends from work coming to visit late morning.Hopefully we can sit in the garden which looks great thanks to my husband and sister in law labouring. .Lots of pretty flowers and some vegetables doing well in greenhouse.
I have forced myself to do exercise this morning on arms and legs to try and prevent joint stiffness.
Planning breakfast in bed.Just had a cup of tea.
Feeling blessed.
Wishing you all a cheerful day.
Blest wishes
Mary
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