Page 1 of 2 12 LastLast
Results 1 to 10 of 17

Thread: Flail arm

Hybrid View

  1. #1

    Flail arm

    Hi everyone ...I have just been diagnosed with flail arm mnd and was wondering if anyone has any helpful tips so as to make life a bit easier please. Also any suggestions how to keep your strength as getting weaker daily ....thanks

  2. #2
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    685
    Hi Happy Chappy, welcome to the forum but sorry that you have the flail arm syndrome diagnosis. I'm afraid I know nothing about FAS. However, it's likely that someone who does know about it will be along soon.
    Dina

    Trying to keep positive, but not always managing.

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,929
    Hi Happy Chappy and welcome to the forum,

    Sorry to hear about your recent diagnosis, it does hit you and your family hard to say the least.

    There are things that can help lift your arms and other things as well. As for reducing the the rate of progression, take riluzole, eat well, don't over use your muscles but keep them moving through their full range of movement once or twice a day even if you need help to do that.

    I don't know your present situation etc, I guess that you will let us know as time goes on.

    Please feel free to ask any questions or share things with us.

    Best wishes, Terry

    PS. It is probably a good idea to delete the other thread as it would save confusion.
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    931
    Hi Happy Chappy. Welcome to our forums. I'm sorry about your new diagnosis. You must be less happy about that. But a great forum name. Keep smiling if you can. I don't know anything about flail arm syndrome. That's the first time I've heard of it. Take care. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  5. #5
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    431
    Good afternoon Happy Chappy

    At least they did not call it. "man in a barrel syndrome" which is what I was told by one person who saw me when my left arm started to go!!!

    Essentially, I believe what you have is arm onset motor neurone disease which ordinarily starts with the loss of the pinch grip between finger and thumb and gradually progresses to the loss of the function of the whole arm, leaving it "flailing around".

    It may be, you are affected in one arm mainly or both, but either way, you have my sympathy in my reflection that in some ways, I would rather be losing my legs 1st and then my arms, but then of course I do not have that choice.

    Please let us know how we can help you - I have got various fixes my weak left arm which may be of assistance to you

    Warmly
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  6. #6
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,485
    Welcome to the Forum, Happy Chappy.

    As Terry said, try keep your joints moving, even passively if you can't manage it actively, but don't exercise to the point where it aches or takes long for the muscle to recover.

    Can you still feed yourself and do your personal care? And use a PC or phone?

    Your OT should give you gadgets to help you maintain independence for as long as possible.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #7
    Thank you everyone who has replied to me ...nunhead man I agree with you i would also prefer my legs first then arms but alas I don't have that choice either...how long have to been diagnosed with flail arm ....I was diagnosed in april...is it just your left arm at present .... Best wishes

  8. #8
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    431
    Hi Happy Chappy

    Thank you - do keep posting here to help

    Quote Originally Posted by Happy chappy View Post
    how long have to been diagnosed with flail arm ....I was diagnosed in april...is it just your left arm at present
    My arms do not flail at the moment as I have some musculature left in both shoulders and arms - my left hand is quite badly damaged but because my fingers have become stiff I can still push things using the strength in my upper arm and shoulder and contrasts things to my chest to carry them - a pint of beer, for example!

    This has been going on since about May 2015 - at least, that is when I began to notice something.

    My right arm is beginning to weaken in that my pinch grip looks a bit weird at the moment - I can pick up pins from the floor and open the buckle on cycling toe strap, which is my test - and it may be because I keep on testing I am exercising something I might otherwise have lost - but who knows.

    As I have said elsewhere I think we need to move before I lose the rest of my arm function as the house we live in is not suitable for wheelchair use in my guess is I will need that in due course
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  9. #9
    Good evening everyone....nunhead man do you mind me asking have you or anyone else in here ever tried the tens machine ...I have tried having electric shocks but not sure whether that has made the muscle go quicker....Also has anyone tried anabolic steroids....I'm not sure if they would help but if it would give me some strength back i would try them best wishes

  10. #10
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    431
    Hello Happy Chappy

    Quote Originally Posted by Happy chappy View Post
    Good evening everyone....nunhead man do you mind me asking have you or anyone else in here ever tried the tens machine ...I have tried having electric shocks but not sure whether that has made the muscle go quicker....Also has anyone tried anabolic steroids....I'm not sure if they would help but if it would give me some strength back i would try them best wishes
    To both questions the answer is neither, because I am not sure either is sensible.

    I am not sure the TENS machine will help much with those muscles that do not have a nerve supply, but I await anybody else who has tried it to see whether this might be the case.

    And I suspect the trouble with steroids, if you mean the use as in bodybuilding, is that what it will do is build the muscles that still have a nerve supply and if this is one side of an opposing pair makes it more likely that you might do some joint damage because if the other side is not working there will be an unusual stress on the joint.

    For example, if the steroids strengthen your bicep in your upper arm and your tricep does not work, I presume there is some risk of damage to your elbow joint

    The advice I have had is to try and gently exercise the muscles that still have a nerve supply which involves some particular contortions, as in my case, I have often lost one side of opposing pair of muscles, but not the other - e.g. I still have the use of both my bicep and my tricep in my left upper arm, but the tricep is much weaker than the bicep and so I need to be quite careful how I exercise as the tricep cramps up very quickly, whereas the bicep is much more able to take exercise.

    Warmly
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •