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  • alexph
    replied
    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 🤞

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  • Deb
    replied
    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

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  • Gordan1111
    replied
    Welcome @​alexph Life is cruel *!' sometimes xx​​​​​

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  • LindaB
    replied
    Age is a socially constructed paradigm...🤔

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  • matthew55
    replied
    And I'm 7 😉😁🤗😂xx

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  • LindaB
    replied
    alexph welcome to the forum and sorry for your diagnosis. Great to hear you have a supportive partner. They can find support here too.

    I'm sure there must be others on here a similar age.

    Although I'm just slightly older #cough #wink - we're all just as old as we feel so I'm about 106 🤗

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  • Mary C
    replied
    Hi Alex,
    Welcome and sorry you have the diagnosis.I hope you are linked to health professionals who can support you?.
    Can your work based Human Resources offer any equipment support to do your job given problems with keyboard.
    I am retirement age and diagnosed 18 months ago.The most important thing for me was ensuring I knew who to turn to when I needed equipment, to do voice banking etc.
    I do hope you get replies from people on forum nearer to your age .
    Best wishes
    Mary

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  • Rosemary6NT
    replied
    alexph Hi, sorry for your diagnosis. I’ve found the people on this forum very kind and helpful. It’s good to have contact with people who have similar experiences. I hope your progression is vey slow.

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  • matthew55
    replied
    Welcome aboard alexph you are in the right place for help, advice and friendship. We have all been where you are so you won't find sympathy here but plenty of empathy. 😁🤗😂🎄xx

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  • shelly21
    replied
    Hi alexph and welcome. Mine started with speech and right arm. Its certainly a roller coaster journey. But keep popping on the forum as it really helped me. X

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  • keno
    replied
    Originally posted by alexph View Post
    keno Hi. That’s quite a similar progression to mine so far. I hope it stops there for a while for both of us. It’s definitely hard to come to terms with and I really struggle with the uncertainty, but I suppose at least it leaves some room for hope.
    Yes I found it hard at first
    Mathew says take each day as it comes and I have found that helps a lot.

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  • Ellie
    replied
    alexph You may be able to get help from Assistive Technology to find a better way of using your PC, including 'better' speech recognition. I use eye gaze but I have no speech.

    Shame about the Riluzole, some find CBD oil helps their twitching.

    I was diagnosed 3 weeks after my 38th birthday, not as you as you, but the baby in my clinic for a while... xx

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  • alexph
    replied
    Ellie hi Ellie. Thanks for the welcome. I am taking Riluzole but I don’t find that it helps with my twitching unfortunately.

    My typing on a physical keyboard is much slower as some of my fingers don’t straighten anymore and get in the way. I am still pretty quick typing on a phone with my thumbs (which I am doing right now). I spent some time looking into voice control for my Mac but I’m having an issue enabling it. I’m going to try to get support from Apple to figure it out.

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  • Zante
    replied
    alexph hi. Am so sorry you have had to join the forum. And at such a young age. I don't know if there are any others with similar age on here but am sure they will pop along and reply sometime if so. I also hope that u can find the forum a supportive helpful source. Members are a very friendly lovely group which you will find also. Again welcome and am sorry for the need to be here. Xx

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  • alexph
    replied
    keno Hi. That’s quite a similar progression to mine so far. I hope it stops there for a while for both of us. It’s definitely hard to come to terms with and I really struggle with the uncertainty, but I suppose at least it leaves some room for hope.

    Leave a comment:

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