Missing you too matthew55 . Love and hugs to you xxππ€
-
-
matthew55 another upvote to you being very missed. Many Hugs.
Thomas waiting for results from the referral from SALT, for a communication device as his voice is away 90% of the time.
His hands were the first to go.
Hoping for an amazing device of some kind.
Still waiting for the level access door. Weather is glorious here in Cumbria today
and Thomas still stuck inside.Donna
Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.Comment
-
Thanks everyone. Community nurse wasn't sure and felt it needed to be checked over by someone with more knowledge. Think a bit of physio would be helpful. Might be an idea to include it into his singing sessions.
πwhen i can think of something profound i will update this.Comment
-
Hope your new technology can resolve your issues. Forum needs you budπ€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
-
Talking about new technology the other day I shouted at Stephen. Cant even remember what I said but I was a bit harassed, putting mildly. Anyway suddenly there was another voice and siri or Alexa said 'she didn't understand what I'd said'. Had to laugh!! You never know who is listening! π€£ππ€£when i can think of something profound i will update this.Comment
-
Had a haircut from a carer who was a stylist. Feels greatBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
-
I cut Stephen's. Dog grooming came in very handy. π³ππ€£when i can think of something profound i will update this.Comment
-
Hi Matthew. Always good to hear from you hereπComment
-
Hi everyone Matthew55 has passed awayComment
-
Diagnosed 3rd November 2021 Bulbar OnsetComment
-
Journey well Matthew.Hi, 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.Comment
-
I feel awful, somehow I missed Matthewβs update post. This news is quite shocking and Iβm very sad to have lost a friend. It was great knowing you through this forum Matthew.Diagnosed October 2020 - See my blog at https://www.myneurodiary.comComment
-
Matthew you contributed so much to this forum through your ups and downs, thank you, set up so many different threads, were a very creative person, who struggled on valiantly, and with humour. Do hope the ending was peaceful and that you are in a very peaceful place now. Sending love, Heather xxxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!Comment
-
matthew55 sending love & light ππ»π―
Such very sad newsβ¦.Matthew was indeed a huge contributor to our MND family & forum. Always ready with a hug or a joke, welcoming to all.
I hope he was well supported in his final hours.
RIP Matthew ππ»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
-
I am saddened and shocked to read this. Matthewβs posts helped me enormously when I was still waiting for a diagnosis. I hope his final hours were peaceful. RIP Matthew xxBulbar onset diagnosed Nov 21. No speech but limbs ok so far.Comment
Comment