No announcement yet.

Hi :)

  • Filter
  • Time
  • Show
Clear All
new posts

    Age is a socially constructed paradigm...🤔
    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.​​​​​​


      Welcome @​alexph Life is cruel *!' sometimes xx​​​​​


        Hi alexph and a warm welcome to the forum.

        I am so sorry for your diagnosis and at such a young age. I'm so glad you've got a supportive partner and I'm glad youve found us too. Its a good place for support and friendship.

        Take Care,
        Love Debbie x


          Thanks for all the warm welcomes and well wishes. And comments about age 😁

          Ellie - HR at work will have just received my occupational health report, which mentions that I could benefit from voice control so they are going to try to help. Actually, writing my last message about typing faster on a phone led me to discover an app that lets me type on my Mac via my phone keyboard, so that’s pretty handy. It even lets me use dictation on my phone. So I at least have an interim solution.

          Regarding CBD, I’m trying it but didn’t find it helped much so far. I’m going to up the dose slightly and see if I notice any change. After a little bit of research it seems the dose for helping with ALS is a bit higher than the recommended dose on the label. Might take a bit of trial and error to find what’s right for me.

          Mary C - Yes, I am under the care of a specialist team but I haven’t had many appointments yet. One with the neurologist when I was diagnosed (and I’m seeing him again very soon), one with the specialist nurse and one with a physio. I haven’t had my occupational therapy yet but that’s also soon. I’ve seen others talk about being overwhelmed with appointments and all the different specialists but that hasn’t really happened for me (yet). I’ve done the voice banking myself but hopefully won’t need to use it anytime soon 🤞