Hands Completely paralyzed after 8 months

I am at 18 months and still have some numbness in my hands and feet. It took me about 3 months to walk somewhat normally and improvement seems to come in waves for me. We are all different. In my case the numbness is an inconvieniece but it is tolerable. My right hand has come back more then my left and when tired I develop a tremor. I understand your concern but there really is not much you can do to speed the healing. Has I am sure you have been told before rest when tired. I have found that developing a daily routine is best for me. When I get out of the routine my body reacts. Good luck to both you and your husband. Remember to take care of your self also, this affect the both of you.

I too am 15 months into recovery from a moderately-severe axonal (AMSAM) variant of GBS. My hands and feet are still severely painful, but also feel numb and I still find it difficult to walk, even with a stick. I too have a very significant tremor in my hands and have had to retire from work at 41. I seemed to have a setback after six moths and CIDP was suspected but ruled out when I recently saw a neurology consultant specialising in peripheral neuropathies. He said it was likely just residuals and it would be three years until the level of my disability would be fully realised.

I have tried everything possible to speed up the healing process, but nothing seems to work and exercise just sets me back, so have resigned myself to resting and letting nature take its course. I can sympathise with both you and your husband, it has taken a terrible toll on both myself and those around me, but I have taken comfort from their love and patience. I wish you both the very best for his future recovery Traci.

still waiting for my real hands to come back, 1 yr in. they are much better than they were

I am 8 month in and the hands are still pretty rough. I walk with a little limp but the hands are the biggest deal for me, Stilll typing with 2 fingers mostly but they are getting stronger and mobility is improving.

Take care and do whatever you can in terms of exercise

“Patience” was the word I had posted on the wall in 5 inch bold type front of my bed in rehab. At 8 months into GBS I was being fed by others, could not hold anything, write, open the cell phone cover, etc. Gear everything downward, manage your expectations, and adjust to the pace of slow recovery. It took 14 months for me to return home and function by myself. Easy does it……. he will get tired easily…….when he does…….stop everything. Everyone here knows the phrase for GBS is “Getting Better Slowly.”

“Getting better slowly” is the key to maintain some sanity. Remember that the nerves in the arms and legs are the longest in the body and therefore may take a very long time to repair the damage. I am 16+ years out with GBS residuals and every once in a while “something changes” and I get pretty excited 😀 This is my new normal (:eek: ) and accepting it has been a challenge. My biggest key to my recovery was my hubby’s support. I can’t tell you how important your role/support is for your hubby! Reassure him of his importance to you and the family. He now lives in a new world he wasn’t prepared for. It’s kinda like planning a Florida vacation and the plane lands in Hungry!! Nothing is like it was “suppose to be” 😮

I wish for you both the best as you continue on this journey 🙂 Judi

Keep coming back with questions. Someone will have had a similar experience and can share with you.

At our local support group meetings there are several people who did not have feeling or motor function in their hands and feet for over a year. I think most if not all of them began to see improvement after the first year and eventually gained control of their hands. One individual didn’t see any improvement until after the second year then gained pretty good function after that. Everyone heals at different rates and there is no way of knowing what the final outcome will be for your husband but it is way too soon to know how your husband will turn out.

Traci, you are in our hearts and prayers.

Lee

[QUOTE=Lee Spurgeon]At our local support group meetings there are several people who did not have feeling or motor function in their hands and feet for over a year. I think most if not all of them began to see improvement after the first year and eventually gained control of their hands. One individual didn’t see any improvement until after the second year then gained pretty good function after that. Everyone heals at different rates and there is no way of knowing what the final outcome will be for your husband but it is way too soon to know how your husband will turn out.

Traci, you are in our hearts and prayers.

Lee[/QUOTE]
right on Lee, thanks for that post, helps me gain some patience:)

The nerves regrow slowly (like fingernail speed). If your husband is really tall it may take longer? Maybe vitamin supplements? Quitting any bad habits can help as well. Just some ideas for you and we all are praying for a speedy recovery.

[QUOTE=northernguitarguy]right on Lee, thanks for that post, helps me gain some patience:)[/QUOTE]

I was a fair guitar player before GBS and the guitar was the one true passion in my life. It didn’t take long for my hands to regain strength but I had lost a little bit of speed. I guess at that time I had to relearn how to play so that I wasn’t trying to be a virtuoso all the time and I really began to spend my time and attention in how to make the song work and how to better work within the framework of other musicians. I used to have other musicians say they thought I was a good musician and that was the positive reinforcement I craved. Now, other musicians say they thought the song sounded better than ever, and to me that is the highest compliment.

One of the hardest things about playing after GBS is the vibrations of the strings and the pick became irritating after a very short time. It was like the strings were pranging raw nerves. Maybe it was like a little baby who starts to cry after too much stimulation. Or maybe it is the difference between the mellowness of a an all tube amplifier versus the harshness of a solid state amplifier. (Sorry to the non-guitar players, but I think this would explain the sensation best to Northern Guitar Guy). The end result of that harshness is that I ended up playing a whole lot less than I used to, and [I]that[/I] was the thing that most eroded my skills. I also had less tolerance for loud music so I stopped playing with thrashers and started playing with the older, slower, and volume conscience crowd.

Anyways, sorry for rambling. I just wanted to share some of the challenges I had to deal with in the hopes that you may mentally inoculate yourself from them in hopes that you can continue to flourish and grow as a musician. Good luck to you.

Lee

[QUOTE=Lee Spurgeon]I was a fair guitar player before GBS and the guitar was the one true passion in my life. It didn’t take long for my hands to regain strength but I had lost a little bit of speed. I guess at that time I had to relearn how to play so that I wasn’t trying to be a virtuoso all the time and I really began to spend my time and attention in how to make the song work and how to better work within the framework of other musicians. I used to have other musicians say they thought I was a good musician and that was the positive reinforcement I craved. Now, other musicians say they thought the song sounded better than ever, and to me that is the highest compliment.

One of the hardest things about playing after GBS is the vibrations of the strings and the pick became irritating after a very short time. It was like the strings were pranging raw nerves. Maybe it was like a little baby who starts to cry after too much stimulation. Or maybe it is the difference between the mellowness of a an all tube amplifier versus the harshness of a solid state amplifier. (Sorry to the non-guitar players, but I think this would explain the sensation best to Northern Guitar Guy). The end result of that harshness is that I ended up playing a whole lot less than I used to, and [I]that[/I] was the thing that most eroded my skills. I also had less tolerance for loud music so I stopped playing with thrashers and started playing with the older, slower, and volume conscience crowd.

Anyways, sorry for rambling. I just wanted to share some of the challenges I had to deal with in the hopes that you may mentally inoculate yourself from them in hopes that you can continue to flourish and grow as a musician. Good luck to you.

Lee[/QUOTE]
Thank you so much for responding Lee. I hear you on many levels. I too have had to re-evaluate what I can contribute to a musical group. I miss so much the ability to get up and play and sing for hours, at levels that would make Lemmy (Motorhead) want the volume down. I’m not willing to say that I wont get back there, but as you say it will have to be in another capacity. I can’t even imagine trying to play the club scene where packing up gear at 2 AM is the norm.
Even more than the fatigue factor, I most despair how my fingers fail me. I constantly screw up on basic chords and even in my head where dissonance is welcome, the wrong notes jab into me as do the shooting pains in my hands.
However, I have begun to consider the importance of tone, attack, feedback, and more.

Northern Guitar Guy:

Good for you. As for doinking a note or two, I wouldn’t worry too much about that. I had that problem as well, but it went away after a little reprogramming of the muscle memory.

I hear you on playing clubs to 2AM. That is a brutal life anyways and GBS would make that much worse.

My theory is that at a high level of playing, you do not really try to play notes and you certainly do not think about what your hands are doing. You really rely on muscle memory to interpret what the vocal portions of your brain are thinking about. With GBS, your brain is sending out the same signals it used to, but the nerves are giving you a slightly attenuated effect at your fingers and hands. Basically, the old brain signals are not anticipating slower nerve responses and your fingers aren’t moving as far or as fast as you thought they should. The reprogramming of that muscle memory doesn’t take that long, and I am sure you will get all of that back. The trouble is that as your hands improve and get better, your muscle memory is always a week or two out of date. It is like you are constantly at a learning stage instead of a fluid, expert level where everything seems to flow.

Anyways, I am pretty confident you will return to close to your normal. You may even be a better musician because of GBS in a perverse sort of way.

[QUOTE=Lee Spurgeon]
I hear you on playing clubs to 2AM. That is a brutal life anyways and GBS would make that much worse.
[/QUOTE]
Brutal perhaps, but worth every ounce of sweat if you got the crowd up having a good time!:)

I’m definitely not counting myself out for such an event!

Thanks again for the pep talk, I’m gonna shut up and go play my guitar for a while.

Cheers!

[QUOTE=northernguitarguy]Thanks again for the pep talk, I’m gonna shut up and go play my guitar for a while.

Cheers![/QUOTE]

[SIZE=”5″]FreeBird!!![/SIZE]

[QUOTE=Lee Spurgeon][SIZE=”5″]FreeBird!!![/SIZE][/QUOTE]
Sounds great, though I’m more of a Simple Man. And please not the live version, I still have GBS!!

[QUOTE=Sean’s Wife]Hello,

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?

Thanks, Traci[/QUOTE]

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.

I’m at 39 months hands and feet are numb and useless!

I am currently at about 20 months and I am still unable to extend my fingers. However, I became recently became able to extend my wrists.

I am at 7 months and was starting to think my hands will feel like this forever. I was able to walk on my 2nd month and got my vision back (from double vision) at about month 4. My balance is still bad and if I fall it’s comical to watch me try to get up. My hands have always been the worst and even though I can do many things I couldn’t do several months ago, it seems like my hands feel the same. I can’t write or button my shirt but I can tie my shoes. Anyway after reading many of your post, I realize I just have to be patient and consider myself lucky that I am recovering as fast as I am.

It’s been a year since I was diagnosed with GBS. For a while, I could not do the simple things like zip my pants, tie my shoes, handle eating utensils. My wife put key rings on my zippers so I could hook my fingers there and pull. She managed to make a set of eating utensils with big handles and I bought a set of velcro tie shoes. By December, I was able to tie shoes, eat normally and zip up.

But now, after a year, I still have severe numbness and loss of strength in my hands. My little fingers are toast, with no feeling or ability to move. The muscle that controls my thumbs is still out to lunch and I have a concavity where the muscle used to be. Muscles just don’t like having their nerves not working. In addition, both arms have lost strength. My right arm is developing the Popeye look as the forearm muscles – which work – struggle to compensate for the right bicep – which does not work. I can’t raise my right arm above my head with any weight and have what is called ‘winging’ with my right scapula. The left side is affected, but less so.

Despite all this, I have continued my woodworking and wood turning. At the end of a day, I am exhausted and my hands feel swollen and are quite painful. I’m 70 now, and am probably suffering from some age related problems, but I ascribe any recovery from this malicious malady to my continued passion for building things and turning bowls. The constant movement, the need to use tools, to use fingers that don’t work well, to find new ways to do tasks – are all helpful in the healing process.

Maybe I’ll never get the feeling back in my hands completely. Maybe the pain will stay with me the rest of my life. Maybe the axons won’t repair themselves. Despite this, I feel that this terrible affliction has a silver lining. I thank the gods for every day and have a drive to contribute to society in some way each day that was not there before. With great pain comes appreciation of life. Those that experience GBS, cancer or other afflictions have a greater appreciation of the blessings of each day.

The Northern Guitar Guy – someone who helped me in dark moments – goes off to play his guitar. I’m turning a bowl or building a piece of furniture. Numb hands or not, I’m doing what I can.

I am on my third year, and still have no feeling in my hands. My legs from the knees down are totally numb, and I was told it would probably stay that way. I do still get severe pain in my feet, but the doctor said it was like an amputie who still feels his missing limb. All I can tell you husband is that I can walk with a cane, sometimes without, but I still have to be careful with my balance. I have learned to control my muscles by using theropy and forcing them to stay tight. Better than just sitting, and I can drive with caution. Tell your husband that our prayers and thoughts will be with him, and just hang tough. Keep encouraging him, and make sure he knows each gain is positive. I used to play music, and now can’t but still enjoy the things I can do. We all have our own limitations, but we can still use them to the advantage of helping others who are just learning. I lost a real close friend with GBS so I feel everyday is just great if I can get up.

I lost the use of my hands with GBS on 12 July 1990 and they never recovered. I am only writing this to encourage you that life does not come to an end unless your attitude of mind decrees it. I have managed to adapt to most of the problems that have cropped up over the years, the trick is to work out a solution and believe me, that keeps the brain active. I drive 8000 miles a year in England with no special disability aids on the vehicle. It took me four years to learn to walk again when the doctors told me in September 1991 it was a waste of time even thinking about getting back on my feet. I still have all my own teeth and use them constantly as a third hand. I once jokingly said there ought to be a law against anybody with false teeth ever getting GBS!
There is one problem I have never solved; I cannot do up the top button of shirt when I am wearing it, but that is a small price to pay for independence.
Keep smiling!
Adrian
This was dictated with speech recognition software (DragonDictate)

Adrian you have got the right attitude.