my mom was just diagnosed with acute Gillian barre. I’ve been reading so much but nothing has answered my question. is she automatically doomed down the road ? will she eventually end up in a wheelchair. she’s also diabetic and has arthritis, nueropathy in her legs and she has hepitis C. I’m really at a loss right now. can anybody help me ?
Most everyone with GB eventually gets back to normal. I believe it is 95%. Your mom has some other conditions, obviously - no, she should not end up in a wheel chair. Hope this helps.
I am not really qualified to answer your question, but certainly feel for you. My husband is still in recovery which is not a quick process. Tho GBS statistics are very good. Keeping a watch on her other issues will be the biggest challenge I think. Keep a watch on her sugar levels and help her differentiate between the symptoms. Not always easy, but try. Every issue is not GBS, but hard to remember that when you are worried. Thoughts & prayers for your patience & understanding!! The GBS should get better!!! Just not tomorrow!!! :-/
Doomed to a wheelchair? Absolutely not! The doctor told my wife that I would most likely be confined to a wheelchair, but he was wrong. I posted this video to this forum just to let people know that there is life after GBS.
It may be a little extreme for some people, but it helped me get my balance and leg strength back. I also have arthritis and bad discs in my back. Thanks to GBS my feet hurt all the time, and I get fatigued easily, but I can still do everything I can to keep pushing back my limits. I won't stop until I fall and can't get up! You got to keep fighting!
It took my daughter 3 months before she was confident without her wheelchair but less than 2 years on she only shows signs of discomfort when she is tired so I try to pace things for her. Good luck and thinking of you.
Ps love your unicycle clip Lance - inspirational .
I think the knowledge in gb is well advance. I do not want to give you a false hope only God knows, every case is different, and there is a lots of gbs the give their opinions. I did had gb in 1973 and spend 3 years in the hospital. I do not have experience to tell what to do.
I was diagnosed in Oct, 2013. The dr’s were optimistic about recovery over a 90%+ rate. I’m also young (35) and it only affected my legs. I spent 2 months in the hospital and recovery IS SO HARD AND PAINFUL. Luckily, usually the more nerve pain you feel usually means the more your nerves are regenerating. I can’t speak for every case but the general prognosis is really good, it just takes time. I was given at least a year before I would walk again and I made it 7 months and I am completely out of the wheelchair. Recovery happened really quick and while I was about to give up hope. Tell your mom recovery will happen and not to get discouraged! I hope this helped.
I'm no expert on this GBS thing, but just got it myself June 9th this year. I've watched a lot on YouTube which were very inspiring, seeing how bad some were when they were in the hospital, and then the FULL recovery they made. Some have made full recoveries where others are still in nursing homes. Some had quick treatments with IVIg and/or Plasma Exchange (plasmapheresis) and great recoveries while others had late diagnosis' and late treatments and worse outcomes. I've noticed more sharing on this support group of those that have serious cases. I'm one that's kinda in the middle, with not having had serious lung crisis, can still breathe on my own this many weeks later, but with progression of continued muscle weakness and horrible pain. I wish your mom the best, as she does have other health issues that may complicate the GBS. No one knows how fast or slow each person heals, as it is unique to every person, is the answer I've gotten and read a lot lately. I'll pray for you and your mom!!!
Wishing you the best, Chatty Kathy
I cannot give you a definite answer as each case of GBS is different. The main thing is attitude. Do not give up and have determination. I was diagnosed on June 4th 2012 and was in hospitals/rehabs until October 12th 2012. I am walking albeit wobbly. I still use a cane out in very open spaces to help my balance and keep me from falling and breaking something. I still keep my walker by my bed at night for help in getting to the bathroom. I do get tired easier than before but I am older( 73) and I do have arthritis and I’m overweight. However, I am back doing as much as possible. I can drive again when I want, playing piano in church every Sunday, taking trips ,etc. Don’t do much shopping if my hubby can do it for me, but I do if I want to. I still have some numbness and tingling in my lower legs and feet so I can’t stand or walk for long periods. But you tell your mom to hang in there. I still very much have a good life, just a different one. Attitude, Attitude, Attitude! Praying things will improve soon for your mom. I too had a great daughter that went thru my ordeal with me. She is Blessed to have you.
Hugs and Blessings
Encourage her to wiggle/move every and any part of her body as often as she can every day non stop. This really helped me regain strength when things had moved along enough that I could get physio out of the bed. Just twitching, jiggling those muscles keeps the brain trying to send messages to those shut down limbs. Big hugs to her and all of you. A tough illness for the patient and families but keep hoping, dreams do come true and picture her walking again and living that full life.
Hang in there there will be improvements one baby step at a time, this is my
2 nd fight and I am winning at age 65
+1 on what Gayleen said. You can do a lot of exercises in bed. Here's a suggestion: The physical therapy group gave me a smooth board to use in bed. With socks on (to make my feet slide easier), I would slide my foot on the board from straight leg to bent leg position and back down. It was REALLY hard to start with, but over time it got easier. Stuff like that can make a big difference, and you can do it whenever you like, not just when it's "official" exercise time.
Hi Brooke. Your mom is not automatically doomed. Most of the people who are diagnosed these days and have access to good health care make a full or nearly full recovery. And that is true even if the diagnosis comes very late in the game. In my son's case, the hospital did not figure out what he had until he needed life support (intubation, feeding tube, heart medication, etc. ) and they did not start the IVIG until the next day because they needed to get him stabilized first. He made a nearly complete recovery (but it did take a lot of work) and now he does not require any kind of treatment or medication. If you did not know he had GBS, you would never suspect he had ever been sick. Has your mom received IVIG or plasmapharesis?
So much depends on the patient's determination to improve and her doctors' knowledge. With GBS I think it is critical that you find doctors who have actually treated people with the condition before -- not just read about it in books.
Hang in there!