I've been told by my Neuro and Nurse at the ALS Clinic I attend to that the "heaviness" feeling on arms and legs is because they cannot overcome gravity due to weakness and atrophy.
When you try to raise them, they are so weak that gravity pulls them down. If you do not practice R.O.M. (Range Of Motion) exercises regularly for those affected Limbs (arms, for example), you risk developing "frozen shoulder" which is nearly impossible to move once it gets to that point.
Thanks Nighthawk, that was a great bit of information.
My PALS is getting the frozen shoulders. As this progresses and he is losing so much functionality, he is sitting still for many hours in a row, and talking to people on facebook. He speaks very positively, but he isn't doing much to help himself. I know he needs to do ROM work, but he just slowly does less and less.
Recently he has started getting me to massage him, and do ROM for his shoulders. They are shocking, it so saddens me to feel this strong, healthy man deteriorating so fast. So many muscles are just strings now, with knots along the strings. And important muscles joining his arms to his shoulders are the worst, and so tight.
The massage and ROM stuff is making a difference, but I feel that he needs to do his own exercises every day, twice a day would be better. Then I feel that what I am doing for him would be of even more benefit, but a part of this disease that I really hate is how it is sapping away 'him' as well as his body.
So I will continue to massage and do ROM, but I think that other PALS should listen carefully and understand that if they end up with frozen shoulders, they will begin to suffer pain, and their functionality will be so greatly decreased.
So I implore all the PALS reading this to take action, do whatever you can to prevent the seizing up of muscles. You won't stop this disease, but you can do something to slow down the effects of the disease, and it is your movement and comfort that is at stake.
Not all CALS feel comfortable with massage and ROM, I can understand that, I don't like doing it. I'm always so scared I will hurt him, do damage or something. If you can do ROM exercises yourself you will know how far you can push yourself, and go a little beyond that if you are game, but doing it to someone with this disease, when I am not a physiotherapist is a bit nerve wracking. Of course I would do anything at all for my husband, but at the same time I worry about my limitations in knowledge, and that I can't feel what I am doing for him.
He does give me feedback, but often it's just gone a bit too far before he lets me know.
Stay strong everyone, and do all you can to keep what you can as long as you can!
Tillie (nickname affectionately assigned to me by Barbie, so it's official!)
