Flail arm

[Happy chappy]

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

[Gillette]

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.

[Terry]

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.

[Lynne K]

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

[nunhead_man]

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

[Ellie]

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.

[Happy chappy]

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

[nunhead_man]

Hi Happy Chappy

Thank you - do keep posting here to help

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

[Happy chappy]

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

[nunhead_man]

Hello Happy Chappy

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

[Devonmaid]

My husband has flail arm MND. It started with fasciculations in his arms and then his right arm lost strength - he was struggling to lift it etc and then in December 2016 he was carrying 2 drinks at a party and nearly dropped one as his right arm wasn't working properly. It gradually got worse, his neurologist tried a couple of treatments for various possible diseases but none worked. He had to stop work and driving in June 2017 (was a bricklayer) and got diagnosed in October 2017 at the National Neurology Hospital in Queens Square. He gradually gets worse and now he is virtually paralysed. Apparently flail arm can have a slower disease progress than other versions of MND. His MND specialist said that this is not always the case and I suspect he knew Tony was a faster progression. Hopefully your progress will be slower. We have lots of input from occupational therapy, physios, speech and language etc and they all make things easier. Take care

[Sueb]

My Husband, Steve, was diagnosed with flail arm als in July 2014. He had been having problems with his hands for a few years and was diagnosed with carpal tunnel in both hands. Then in 2013 he had a rotator cuff injury repaired and his arm didn’t get any better. At the same time he had his carpal tunnel repaired on both hands. Again they didn’t get any better and his physio said there was something else going on and didn’t think he had carpal tunnel. He was finally diagnosed with flail arm ALS. The neurologist said it could stay in his arms or progress through his body which it did. He now cannot move his arms, hands or legs and his swallow is now affected and he has a feeding tube..

Sue

[Happy chappy]

Hi everyone can anybody tell me if creatine and whey help with the symptoms of mind please

[Ellie]

What symptoms are you trying to alleviate?

[Happy chappy]

Hi Ellie ..basically just try and slow down the progress of flail arm. I have mixed results as some info on internet states creatine does help but spoke to my neurologist
and he said it doesnt