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    Ellie Yep the day that I currently can't get out of my mind and wish it were a dream. Happy Friday to all and so happy to be able to chat to you all

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      Originally posted by Ellie View Post
      Good afternoon friends 😘😘

      My memory of being told "[Neurophysiologist] said the EMG confirmed it's ALS" is still as gut wrenchingly sharp as it was 15 years ago...

      We're all here today, yay, and... Thank Crunchie it's Friday (even though for most of us, it doesn't make a blind bit of difference what day of the week it is)
      I had already guessed by that day and my only remark was how long do I have
      I am 75 so can't complain if I get another two years or so.
      It's all funny

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        I knew my dad was ill, not mnd but something equally horrible, I knew my brother was sick and what was wrong even though no one would tell me. I knew what was wrong with Stephen but had a terrible time getting him to the doctors and he thought it was Parkinson's. We then had an appointment at Coimbra hospital where we saw a doctor and neurologist quickly and they confirmed my fears. I also brought up the ftd but that was only confirmed last week. I don't want to remember the actual day of diagnosis because I knew well before. I wish I didn't know or realise when people are ill because I dont want to have to tell them. πŸ™
        when i can think of something profound i will update this.

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          Difficult day when we received that news...I went into auto pilot mode...right tell me abc....don't tell me def Blah blah.....very matter of fact....that's my default...trying to maintain control.

          I remember walking back the car with my friend...she started to cry....I said no we're not crying I have to hold it together to drive home.

          Once home she broke down & I was weirdly calm. Was just thinking about how to tell my girls...telling them reduced me to a wreck...because their distress was overwhelming.


          ​​​​​Feels better once all who need to know know....

          Anyway yes today is today and we are where we are🍷

          ​​​​​​
          I'll rephrase that...I am where I am 🍷


          Last edited by LindaB; 21 January 2022, 14:54.
          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.​​​​​​

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            Hello to all my friends xx

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              Morning everyone by
              when i can think of something profound i will update this.

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                Good morning Denise and everyone
                Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                  Good morning
                  It's all funny

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                    Hi de Hi happy campers.
                    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.

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                      Morning people...have a good oneπŸ€—
                      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.​​​​​​

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                        Morning all, hope that you all have a good weekend xx
                        ALS 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.

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                          Wordle 217 4/6

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                            Good morning my fellow strugglers. This morning I tried an idea I was given. I used my bed controller to raise the end to an upright position. After a struggle with light and control it worked! Happy Day. πŸ’‘πŸ˜πŸ˜‚πŸ˜xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                              Oh we have beds that I can raise both ends. I'm in control because Stephen cant reach the remote - which works with my power obsession. Anyway I thought this great fun until my batteries failed and the bottom of my bed was in the up position. Try getting out of bed when you cant get your legs back to ground 0! Stephen going on about me helping him out of bed and I'm hanging there like a bat. How unelegant and a great start to the day 😳
                              when i can think of something profound i will update this.

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                                Good morning 😲 - I made it before noon πŸ‘πŸ˜˜πŸ˜˜πŸ˜˜
                                ​Diagnosed 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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