Hi All,
As I have just started the recovery process but have progressed from wheelchair to walker I’d like to hear about how others went through the process (I realize it’s very individual). Presently I can’t tackle the stairs and have physio visiting me at home daily. It’s nice to be home!
Sorry, I obviously posted this in the wrong area.
Hi Elizabeth,
As you say, everyone's recovery is unique, but they do have a tendency to follow similar patterns. I went from bedridden to wheelchair to walker to cane to walking (relatively) normally. This process took about a year for me, but everyone is different. Stairs are still hard! (a year and a half later) I exercise every day, but the muscle growth is a lot slower than it used to be. I'm still weaker than I was before the onset, but I keep at it. I think eventually I'll catch up. (Age has something to do with it also. Now in my 60s, muscle growth will naturally be a lot slower than my 20s!) My joints are a more "achy" now than before, but I'm not sure how much of that I can attribute to GBS, and how much to just getting older. Still, I feel better after a work out, so I keep on going. I still have nerve damage in my extremities that is painful, that will be with me for good, but I can live with it. I think that is a very common lingering symptom.
Best wishes in your recovery, I hope you continue to do well.
Lance
Elizabeth -
Welcome to our exclusive 1 in 100,00 club. You are a special person!
I went from bed-ridden, to a wheelchair, to a walker, to a cane in a period of 5 months - 5 weeks in hospital with 2 a day physical therapy - 6 weeks at home with 3 a week home therapy, and 6 weeks of 2 sessions per week out patient therapy - followed by daily self directed therapy for another 3 weeks . At the conclusion I was able to resume work at United Airlines Reservation Center, walk with a cane, drive with no problem, type, feed myself, and once more feel like a positive person.
I still have CIDP which effects my feet, lower legs, and hands but I can control and live with that. My life is about the same as before and for that, I am greatful.
Just keep on moving. Put a pedometer in your pocket and strive to walk as many steps as possible each day. Lift weights, ride stationary bike - do whatever you can to keep active. Don't let this affliction WIN. You can beat it!
I am thankful for the elevator in my workplace. Without that feature, I would not be able to work. I can walk up and down stairs very slowly - the balance issues are still an issue that I must constantly be watching out for - so the elevator is great.
Be cheerful, you will improve daily -
bob
Thanks for the encouragement Bob and Lance! Yes this is an exclusive club, wish we weren’t so darn special 
It was great to hear that you both have progressed so much. I have been home from hospital now for almost two months and have been working hard, physio is still coming to the home. I have gone from chair to walker and am now up on two canes. The stairs were a daily monster but with effort I’m mastering them. My right foot hasn’t progressed as well as my left so I work on that a lot. Movement is coming along with physio but my balance is still quite an issue.
It feels amazing at the moment to see that life will return to a new semblance of normal.
I am grateful that I was a bit of a gym rat before GBS so even in my 50’s I was in decent shape but hate seeing how much muscle loss has aken place.
Thanks again for the encouragement!
Elizabeth said:
Thanks for the encouragement Bob and Lance! Yes this is an exclusive club, wish we weren't so darn special :)
It was great to hear that you both have progressed so much. I have been home from hospital now for almost two months and have been working hard, physio is still coming to the home. I have gone from chair to walker and am now up on two canes. The stairs were a daily monster but with effort I'm mastering them. My right foot hasn't progressed as well as my left so I work on that a lot. Movement is coming along with physio but my balance is still quite an issue.
It feels amazing at the moment to see that life will return to a new semblance of normal.
I am grateful that I was a bit of a gym rat before GBS so even in my 50's I was in decent shape but hate seeing how much muscle loss has aken place.
Thanks again for the encouragement!
Can’t wait until I can drive again!!
I work on my balance every day. I felt like I needed to work on that particularly, since it had completely gone away at the lowest point, so I took up this unusual hobby:
http://www.guillainbarresupport.org/video/lance-and-his-36-unicycle
It has been a real life changer for me. It provides tremendous leg and balance exercise. I recommend it for anyone who feels like they're up for a challenge. (and it's not as dangerous as it looks)
Lance
Hi Elizabeth! Welcome to the club! I am 72 yrs. old, was diagnosed on June 4, 2012. I was in hospital/rehab for 4 1/2 straight months. I went from being bedridden, to wheelchair, walker and now cane sometimes. I came home on a walker and used wheelchair sometimes. I'm like Lance, I have a balance problem, but there is no way I could ride a Unicycle. i have never been athletic and detest exercise (a real couch potato you might say). However, I was and still am diligent about my therapy and fitness because I was and still am determined to beat this GBS. I came home 12-12-12 and started out-patienet therapy 3xweek. In February of 2013 I went into a fitness program where I pay $25/mo. and go anytime of day and as often as I like (usually 2-3xweek). I work on bicycle, treadmill, total gym, elliptical and sometimes things for my arms. I still have problems with my lower extremities especially late in day and at night. They feel like they are wrapped very tightly in Ace bandages. Must have some permanent nerve damage, but I am walking on them. I usually take a cane with me when I go out for fear of falling. I use my walker at night to go to bathroom. I started driving in the early part of this year. Good to know that I can, but I only go like to the beauty shop, drive thrus, short distances, etc. When we are on trips I can help drive if we are on 4 lanes where I can use cruise control. I play the piano for church and started that back about a month after coming home. It did take some time before I could feel and control the pedals very well. I am so much better than I was, thank God. This is a horrible disease, but we can recover and return to a somewhat normal life again. I had to have a colostomy in the middle of my recovery so I have had that to adjust to also, but that too is doable. Life is good! Hang in there and it does get some better. Some of us recover faster than others. Mine has been pretty slow.
deltarat said:
Hi Elizabeth! Welcome to the club! I am 72 yrs. old, was diagnosed on June 4, 2012. I was in hospital/rehab for 4 1/2 straight months. I went from being bedridden, to wheelchair, walker and now cane sometimes. I came home on a walker and used wheelchair sometimes. I'm like Lance, I have a balance problem, but there is no way I could ride a Unicycle. i have never been athletic and detest exercise (a real couch potato you might say). However, I was and still am diligent about my therapy and fitness because I was and still am determined to beat this GBS. I came home 12-12-12 and started out-patienet therapy 3xweek. In February of 2013 I went into a fitness program where I pay $25/mo. and go anytime of day and as often as I like (usually 2-3xweek). I work on bicycle, treadmill, total gym, elliptical and sometimes things for my arms. I still have problems with my lower extremities especially late in day and at night. They feel like they are wrapped very tightly in Ace bandages. Must have some permanent nerve damage, but I am walking on them. I usually take a cane with me when I go out for fear of falling. I use my walker at night to go to bathroom. I started driving in the early part of this year. Good to know that I can, but I only go like to the beauty shop, drive thrus, short distances, etc. When we are on trips I can help drive if we are on 4 lanes where I can use cruise control. I play the piano for church and started that back about a month after coming home. It did take some time before I could feel and control the pedals very well. I am so much better than I was, thank God. This is a horrible disease, but we can recover and return to a somewhat normal life again. I had to have a colostomy in the middle of my recovery so I have had that to adjust to also, but that too is doable. Life is good! Hang in there and it does get some better. Some of us recover faster than others. Mine has been pretty slow.
Wow Lance I’m impressed!! I’d take just walking in a straight line at the moment never mind a unicycle!! But, it is something to aspire to :). The balance thing is slow to come, I still fell like I’m toting sandbags instead of legs and the ataxia means my brain isn’t quite sure where they are in space but my canes help a lot.
Delerat, it sounds like you have come a tremendous way! I envy all of you that can drive, that is really clipping my wings at the moment, making me feel anything but normal right now. It must be really tough for you having a colostomy on top of this but your attitude sounds great about it all.
I feel like I’m far enough in that the shock has worn off now, it’s really nice to know I’m not alone in this
Elizabeth, I have come a long way, but I still can't walk in a straight line either. I can walk wobbly in the house because I know I can reach out and touch something. But when I leave the house, I still take the cane with me and use shopping carts for support in places like Walgreens or a grocery store (that is when I do go) My hubby does most all of the shopping now unless he takes me. We are retired and I let him go because he likes getting out and I am pretty satisfied to stay home most of the time. I get out to the beauty shop and church and other places on occasion. And like you, my legs and feet don't even feel like legs and feet at times. When I get up during the night or first thing in the morning, it feels like I am walking on stubs. But, I'm not complaining. Just so thankful that I am doing what I am. just got back home from Gatlinburg and seeing our grandson get married this weekend. At one time, I never thought I would be able to play the piano again, much less take a trip. So keep the faith and keep on doing your therapy and you will get better also. I'll probably have to keep doing the fitness routine for the rest of my life if I want to keep moving. I can really tell a difference if I have to miss a week.
Hugs & Blessings
Kay
I am sorry that you had to join this exclusive club. My wife started with her bout of GbS on Feb 14 2013. As of Oct 2013 she is about 90% recovered. She came home March 19 and used a walker. Within 3 weeks she was walking without the walker. We went to rehab two times a week. One session was pool therapy and the other was not. We saw great improvement in balance and walking. By the time I had to go back to work in May she was pretty much self sufficient. We have membership at the YMCA and we would go and do the pool therapy there on the off days. The therapist would give us things to work on and we would do them together. My job was to help her through the exercises and make sure she did not push her self to hard as this could cause more issues. They were really worried that she could relapse or worse have a set back. The thing with getting better is your muscles are not weak it is the nerves that are not working right, so pushing yourself to hard is not productive. By June 5 she was done with rehab. The one thing I took away from this is going to rehab with my wife gave us the strength and will power to do the extra on the days we did not have therapy. This started from day one in the hospital till the last Doctor visit. I will say that pool therapy really helped her. The water helped support her but it forced her whole body to maintain its balance, so she used more muscles and that caused more nerves to fire. I will say that she never had to be ventilated so this was a good thing as the doctors have told us that recovery would be 3 to 5 years if that happened. As it stands now they are telling us 1 to 11/2 years.
Good Luck and may you have a full recovery
Mike