Hi, everyone! I am here on behalf of my brother in law Jim, who recently developed a fast onset of GBS. This is day 29, he is still in a ICU type unit with vent and on second go around of IVIG! He is paralyzed from the neck down. We are wondering what progress to expect from here and how Medicare works with this disease!
Hello Ms.AmuseBouche'Photog,
Your brother-in-law's progression sounds more-or-less typical. If he has reached his lowest point, and has stabilized (hopefully the IVIG is helping), then he should begin to regain some feeling in his extremities soon. His timetable sounds similar mine, and I was at my lowest point at about that time. In about a week there began to be some feeling and slight movement. Perhaps it will be the same with him. Every case is different, but hope for the best!
Sorry, I don't know anything about Medicare. Fortunately, my insurance from my work covered me. It would probably be helpful for others to post anything you do find out.
Good luck!
Thanks so much for you sharing your history! He is discouraged. I will share with him that many people start to show improvement at this time!
Hi there.
I agree it sounds like the way GBS usually carries on! Not wanting to alarm you but in my case when I hit the bottom I took a very long time to start recovery. In total I was on a ventilator for 4 months and was moved to a rehab facility once I was able to breathe on my own again. I regained movement in the top part of my body first - slowly but fairly consistently. The lower body improvements took much longer. I’m really not trying to frighten you but it is important to know that even if the recovery seems to be taking longer than expected it will eventually happen. After 2 years I returned too work part time and resumed driving. I was lucky that this happened to me while I was living in the Netherlands and the care was amazing. I’m sorry I have no idea about the Medicare situation but I hope he will be covered for physiotherapy as that was the key to getting me back on my feet - literally. Wishing your brother in law a speedy recovery and strength for all the family members. Lin
Lin, thanks so much for the info. We need to hear these truths so we are prepared for long term struggle. Better to know that progression is slow in this waiting game, rather than to think no progress is being made. The fact that you are working and driving is a blessing I will share with him, however communication is an issue at this point. Did you have speech theraphy?
Lin,
Reading people's stories is encouraging, but every GB case is individual. Hopefully your brother-in-law won't compare himself too much to others. Celebrating the small steps in his recovery will be good for all.
I had speech therapy, OT and PT too. I hope Jim is also getting counseling.
He will probably "progress" to a nursing home/rehabilitation unit next. Mine was excellent, once I didn't let seeing the sad folks there bother me. I had to work hard and speak-up for my needs and wants, but that was good. Being passive is not good.
I hope he is doing some fun things too. Music, jokes, visits from friends etc.
Molly
Don’t worry Molly I am very aware that each individual has a different experience with GBS and As I put in my original reply my intent was not to frighten but to give some assurances that if things didn’t seem to be progressing that things eventually would - (as in my case )and so not to panic. It helped me to have visits from a lovely gentleman who had been as severely hit as I was. He told me each step he’d gone through and filled me on the good and the bad along the way.
Definitely agree about the counseling and if it’s available would recommend it for Jim’s wife and children if he has any.
Thanks to you both for your encouragement and truths. We want him to know that others have been hit severely and still made the come back, because we have read about mostly the ones with slighter cases not on vents. Molly I hadn’t considered the counseling but I do believe he would benefit from it, although he is not normally emotional we have seen some frustration lately! Thanks to all!
I was on a ventilator, and would have died without it. (Came pretty near to it, even with the assist.) So yeah, it's not uncommon at all. I also now have a "second bellybutton" from the G-tube, which fed me for several months. That was also a drag.
Since you mentioned the word "emotional," I feel inclined to mention that since this experience in my life my emotions are a lot different from previous. I'm easily depressed and will cry "at the drop of a hat." It's frustrating, but I hope it's improving. (Counseling, provided by the hospital, was not very useful for me. I felt like the psychologist who spoke with me had an "agenda" that I didn't really care for, and I just wanted to say as little as possible and get her out of the room as soon as I could. So, while it may be useful, make sure you know and trust the counselor.)
After two years my muscles are still not as strong as they used to be, but I exercise daily and can see improvement over the long haul. One thing you learn with this is patience. Recovery takes a very long time, and there's really not much that can be done to speed it up. Just grit your teeth and keep at it. Good luck!
If there’s anything at all you would like to ask please do. Thinking of ou all.
Thanks Lance and Lin!
Hi my name is Lisa,I got GBS in Feb of this year,,, I was complety paralyzed from head to toe,, and in ICU for 8 weeks ,,,I went to rehab for 8 weeks more,I now walk little like a champ..... My hands and feet still hurt like no tomorrow. .But with time that will go away.... it can be done.. It's going to take him a lot of work to get everything moving....Be STRONG and keep telling Jim that he's going to be fine....My Family told me that every day...I believed it and I did it....
Lisa Cremeans said:
Hi my name is Lisa,I got GBS in Feb of this year,,, I was complety paralyzed from head to toe,, and in ICU for 8 weeks ,,,I went to rehab for 8 weeks more,I now walk little like a champ..... My hands and feet still hurt like no tomorrow. .But with time that will go away.... it can be done.. It's going to take him a lot of work to get everything moving....Be STRONG and keep telling Jim that he's going to be fine....My Family told me that every day...I believed it and I did it....
Thanks so much Lisa! This has been hard! Jim was moved today to a long term care facility. He is still on vent. Hope he will come off soon! My twin sister ( his wife) has lived at the hospital for 6 weeks. I am sure that the PT is really important. Glad you are making a strong come back, that helps to have hope! Thanks so much for the encouragement!
That’s good news. One thing I thought about from my time is that the nursing staff were really careful to support my feet and keep them in an upright position then my physio had plastic splints made that kept my feet in the right position and stopped them flopping down. This was so important !! I did end up with what the Dutch call a " slap fot" but it was nothing compared to what I would have been like without the foot supports. Basically they put thick leg warmers on me then rested my legs and feet in the plastic splints so my feet were 90 degrees to my legs , then rolled up towels were used to support my legs and keep them in the correct position. Hopefully this is already taken care of but just in case! Also I had plastic splints made for my hands. They were designed so that my hands slipped into them and were held in sort of a curved / natural way. I have to say they were fantastic! I hated them at the time but my dexterity etc is as good as it’s ever been. I could play the piano if only I knew how 
xxxx good luck to you all. Again if I can help with anything - I’ m here. Lin xx
Ms.AmuseBouche’Photog said:
Thanks so much Lisa! This has been hard! Jim was moved today to a long term care facility. He is still on vent. Hope he will come off soon! My twin sister ( his wife) has lived at the hospital for 6 weeks. I am sure that the PT is really important. Glad you are making a strong come back, that helps to have hope! Thanks so much for the encouragement!
Lin makes a very good point. When lying in bed, your feet will tend to point down to the foot of the bed. This doesn't cause any trouble for a normal person who only spends 8 hours a day in bed. But over a long term, the achilles tendon will shorten, and walking will be very difficult and painful when physical therapy starts. The doctors gave me a special pair of "bed boots" that kept my feet in the 90 degree position Lin describes. They felt weird and uncomfortable, but I got used to them, and they helped.
I'm so very ill myself that I hope you will excuse the inevitable typos.
The MOST IMPORTANT ELEMENT OF RECOVERY is a completely stress free environment; all physical therapy must be the opposite of what they've been taught. "No pain, no gain" will destroy axoins and muscles forever. Range of motion, re-ytraining muscvles, ALL of it must be done so very gently. The caregivers for Jim must literally handle him as you would a newborn baby. Gently. Constantly ask if there is pain. Gentle massage.
I offer all of this because I did NOT get this care and ther5efore failed to recover at all. The outcome of GBS is different for every single case. Fatigue is a very common lasting effect. Fatigue is impossible to describe as it it different than being "tired" or even "exhausted."
Fatigue is a medical term. It's a given and it will be a part of Jim;s life. It may be just the need to sleep 12 hours a night or, like me, sleeping for four to seven days at a time.
Ambulation is something that will be decided by his recovery methods and luck. It will depend on the seveerity of his case. Mine was the worst it could have been; I nearly died and a visiting neurologist thought to ask, "Did yuou run a lumbar protein check?" and thus, though in a coma and on complete life support for many many many months, I was saved. He mustage his recovery hismself to become comfortanle with walking and with balance. Listen to him.
Pain al;so varies for every one. I know people who are lucky enough to need only tylenol, Gabapoentin and Lyrica or Cymbalta. I need all of those but also hydromorphone and morphone. For nine yeares now I have learned to live in this nmew world where I am captive within my body. Pain is the least of the issues with residual GBS. Fatigue is what caused me to become disabled and unable to work.
I hope that I have helped. I am here for you ig you want more answerws. I repeat, if you must fight with your Physicalo therapist then you must fight, but I am not making this up. I've read about this is Gareth Perry's book (this book is a must by the way; he is an MD who HAD GBS) as well as experienced it first hand and the average medical clinician and therapy clinician must be trained BY THE PATIENT. when I think of me on that stationary bicycle, feeling muscles tear that still hurt today, I become saddened by my poor luck.
Plenty of rest. No stressw. No pushing. and give my best to jim and his caregivers-.
Dave
You’re right Dave it’s so important to have therapists that are specialized in working with GBS patients. More damage can be done if you’re being pushed the wrong way. Really sorry you didn’t get the correct care. I too suffered intense pain all over my body and relied heavily on morphine to cope. Wishing you lots of strength.
Thanks lin and Dave! The more info we have helps and I agree you need to have professionals who are experts with GBS! We do not want further damage from someone pushing him too hard or too fast!
Hi, I am sorry about your Brother-in -law. I do not write much on this. My wife had this in Feb 2013 in the hospital for a month
The best that I can tell you is give your sister a break she needs to get away from things at the long term care facility. The road is long and hard as you have found out. The family must be there to protect him. I do not say this lightly as things will slip through the cracks. Who ever is with him needs to pay attention to him and what is happening to his body. The care givers who are family must !!! do the physical therapy with him every day even when not going to the classes. Watch his body for signs that things are not right. I am talking about the feet as has been explained in prior comments. The staff will give you stretches and exercises to help with this. As he is in.bed do movements with his fingers just stretching and flexing helps. Let him do things for himself as he can, resist the urge to keep doing things for him. Someone needs to go with him to physical therapy. Pay attention ask questions. This helped with my wife as I watched for the signs that she was getting fatigued. I also helped with the therapy and they could watch her and see what was working and how she reacted. Last thing is we were not prepared for the length of the recovery. We though maybe a month or two it took almost a year for her to get back to 90% After reading some of the story on here we realize that she is lucky. I do know the Doctors and the physical therapists all said it was due in part because I was a partner in her therapy. We did exercises in bed before she could even sit up or move her legs or arms. Last comment is as a care giver make sure you keep an eye on your sister. I did not relealize how draining and stressful it was. It just sneaks up on you. My emotions are still in turmoil, I start crying at the drop of a hat and dealing with family things is very hard. I hope this helps you and your family.
Good Luck and a good recovery
Mike