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Thread: ALS: Weakness in arms

  1. #11
    Forum Member Gillette's Avatar
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    Hi Wailywoo,

    Thank you for your comments. Luckily I don't have the pain all the time so it's nowhere near as wearing as it could be, thank goodness. I shall remember your tip about the lavender pillow. Thank you.
    Dina


    Trying to keep positive, but not always managing.

  2. #12
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    Hi Dina,

    So sorry you're in pain as there is enough to cope with. I dont know if this is any help but when I was still trying to walk I had alot of pain in my hip, knees and back but now I am in a wheelchair/recliner it seems to have eased. Resting with my feet high also helps but that's difficult to do with your arms.

    You made me laugh by saying you were swearing at your muscles because I often do that to my legs... in fact all our family do !

    Love Debbie x

  3. #13
    Forum Member nunhead_man's Avatar
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    Hi Dina

    Quote Originally Posted by Gillette View Post
    Thank you for your explanation. It makes a lot of sense. I just need to figure out which muscle is not playing nicely so that I can curse and swear at it.
    Thank you for your thanks

    Elsewhere I have been talking about trying to sort out some way of saying goodbye to bits of me - I am still thinking about it more.

    I will probably finalise some sort of protocol for me whilst I am on our yoga retreat in early June - then report back but I think it is going to involve some sort of meditation over that bit of me that is now not working and will never come back and may involve both swearing and tears.

    And it may be worth your while getting onto the Commend study that uses CBT to help people come to terms with their MND - I attend the Patient/Caregiver Advisory Group Meeting - formally this is"A feasibility study and randomised controlled trial of acceptance and COMmitment therapy for people with Motor nEuroN Disease (COMMEND)"




    Warmly

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  4. #14
    Forum Member Gillette's Avatar
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    Hi Andy,

    I hadn't heard of the Commend study before. I've had a quick shufti at the webpage about it but will probably read it more carefully and give it serious consideration.
    Dina


    Trying to keep positive, but not always managing.

  5. #15
    Hi Dina

    Yes, do bear the COMMEND study in mind. Andy, Barry and I are involved in various of the committees overseeing it. Although it's still in the trial phase, I think the principle is a good one.

    My overall feeling from today's meeting is that it is going well.

    Doug

  6. #16
    Forum Member Gillette's Avatar
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    Hi Doug,

    Thank you for your comments about COMMEND. When I looked on the website earlier today it seemed to say that they are not recruiting at the moment. The recruitment it mentioned was for something in 2018.
    Dina


    Trying to keep positive, but not always managing.

  7. #17
    Forum Member Barry52's Avatar
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    Hi Dina,

    As Doug mentioned the trial is going well. They are training more therapists and recruiting more clinics so it is likely they will need more patients during the next 12 months.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  8. #18
    Forum Member nunhead_man's Avatar
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    Good morning,

    Quote Originally Posted by Doug Carpenter View Post
    Andy, Barry and I are involved in various of the committees overseeing it
    Ah! Putting forum identities, together with voices from yesterday's meeting!

    It sounds like 1 of the centres is already recruiting but said, I think it will take a couple of months or so before the trial starts - but well worth registering with your care centre - which one you registered out so we can check if the trial is going ahead there?

    Indeed, you asking might persuade them to go ahead with finding the money to be involved with it

    Warmly

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  9. #19
    Forum Member Gillette's Avatar
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    Hi Andy,

    My MND centre is the Salford/Manchester one at Salford Royal Hospital.
    Dina


    Trying to keep positive, but not always managing.

  10. #20
    Forum Member Barry52's Avatar
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    Hi Dina,

    I’m sorry that Salford is not one of the centres involved with this trial but as Andy has said it is being rolled out and those units that have committed resources to this trial are being supported. Training suitable therapists is an ongoing problem.

    Andy,

    As you have mentioned it is not always easy to make the connection with forum members and those who are involved in steering groups especially when we have Skype links, telecommunications and face to face meetings.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

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