hands and feet
My 45-year old husband has severe axonal GBS and although he is slowly coming back (learning to walk and gain strength in his arms and hands and abdomen and back) his hands and feet are completely paralyzed and numb. Has anyone else had this happen to them for this long and what happened eventually in the long run? How long did it take for you to regain some motion in these extremeties?
It’s been almost 4 years since my GBS onset. Initially, my legs and feet showed the worst of it, though I was able to regain some mobility and control in my hands after the first 1 1/2 years. I made a lot of progress in using my hands as I relearned how to eat, write, play musical instruments. During the 2nd & 3rd years, the condition stabilized and didn’t get worse; though I still walk with a walker & cane, my feet improved and felt more normal.
But 2 months ago, I had a serious relapse after attempting to do too much, and developed edema which has since almost totally crippled both my hands, arms and shoulders, legs and feet. My hands & feet are now constantly swollen, and in so much pain I can rarely sleep at night. I am losing my ability to play a musical instrument, because I cannot control my fingers, and they are almost completely numb these days, yet they tingle with a fiery, throbbing pain. I have very little hand and finger strength & control now, can scarcely button a button or use a can-opener, comb my hair, etc. In the mornings, I cannot feel my hands & feet at all, they are too swollen and numb to be used till I exercise them for half an hour. So I do the wrist & ankle rotations, finger movements and clenches over and over to waken them and build some strength, control and as much range-of-motion as is possible without further damage.
Things are much more difficult these days, but I still have as much work to do, and no one to do it but me. It is a fight to keep what I still have left.
As a music teacher for 25 years, I teach a highly-developed fine motor skill, which is part of a recognized curriculum (Royal Conservatory of Music), as well as exam training. Every aspect & musical note in the program is important, no exceptions. I am 2-8 yrs. away from retirement, so am hanging on with everything I’ve got left.
Nobody knows what will happen to any of us in the course of this condition. But I would recommend that your husband try to stimulate and regain as much of his hand and finger muscle control as possible, with lots of resting sessions. But don’t over-do; I know that just causes more damage. I find that warming my hands in very warm water gets them ready for exercise, as well as gentle massage; and then just try to do the normal things of living…picking up objects, squeezing a door-knob or cup handle, grasping a toothbrush, holding a pen or fork. The thing is to concentrate on each task with due focus; don’t take any movement for granted.
IE: When using my keys, I often drop them unless I focus on each motion of the process. The mind and the hand has to work together.
I am presently trying to relearn how to use my sewing machine. I was ok since the GBS onset after my reflexes improved, but with the edema it took me 20 minutes to thread the eye of my needle in my sewing machine. That has improved now to only 5 minutes. Buttons, coins, keys are really hard to manage at present, but I won’t give up; I still believe I can relearn the process somehow, and it will get easier sooner or later. I’ve found that eating rice has helped to bring some of the swelling down from the edema, but am fighting a daily battle with swelling these days. Have had to give up coffee (because of nausea), though coffee controlled my headaches, and did bring my swelling down at times.
It’s a battle for us all…but keep hoping that the body is still reparing and healing itself. Here’s hoping for good surprises in future.