My friend with GBS is in his second round of acute therapy. He had a relapse in the middle of the first round, was returned to the hospital for plasma exchange and then restarted therapy at a new place.

He has been here for one week, trying to work really hard, but now they are telling him that he has to make arrangements to leave, that they typically keep someone for 2 weeks only. He still struggles to stand and can walk only about 15 steps and both things are only with Ssistance. He can transfer himself from a wheelchair to the bed and visa versa.

My questions:

  1. Are they right about 2 weeks at acute therapy being the average?
  2. What do we do next? Sub acute so he can gain more strength before coming home?
  3. We have read where fatigue may play a major role in delaying progress. He has worked hard and been tired! Is this a factor in his not gaining quicker results? Or is this just the nature of the syndrome?
  4. He is very upset that he may no longer be independent! He is a BERY independent person and this has been a real jolt! Is there light at the end of the tunnel? What are our next steps? We want to be proactive and get him the help he needs so as to increase his chances of recovery!
  5. Do most people come home,live with assistance and make improvements from there?
  6. Is improvement just something the body will do naturally or is therapy a MUST? If it is a MUST, how much is needed, how often, what kind, etc., etc., etc. for example, is water therapy better than other things?

Just trying to find some answers and appreciate all info you can give me to help my friend!

Thank you, mdolich, for your response. I appreciate the info and have more questions as soon as I have the chance. Something going on with my friend and I am praying it is not a second relapse! Thanks, also, for the information links you sent. I have started with one and will subscribe by phone to the other. They require IE to subscribe on line and I do not have that! More later and thanks,again!

mdolich said:

Talismank, I'm not quite following you. Are you talking about treatment, @ plasma exchange, IVIG, Prednisone etc... Or are you talking about Physical Therapy?

Everyone is different and responses differently to treatment. When I came down with GBS back in 2003 I was in the hospital in ICU for a couple of weeks totally paralyzed and had to be ventilated. I had a total of 10 rounds of IVIG over a two month period, plus eight months of physical therapy before I could walk again using a cane. I have known some who it has taken over a year to walk again yet some less then 6 months. It just depends on the person and how they respond to treatment.

I did fine for about a year and a half, then I had a relapse and was re-diagnosed CIDP. I now have to get 80 grams of Immunogloublin (IVIG) every three weeks and will for the rest of my life I'm told. But on the bright side of it, "I can walk and Drive". Most people with GBS recover. Andy Griffith (the actor) had GBS and had a full recovery. Most will end up with some type of residual numbness of tingling from it.

Fatigue is a "BIG" part of GBS and CIDP, especially after get my infusion of IVIG. I was also a very independent person but I had to learn to adjust and get use to having help from others. It is nothing to be ashamed of.

Here is a magazine where you can learn more about neurological disorders. This magazine has articles on GBS, CIDP and other neurological disorders. It also has articles about diagnoses, treatments, insurance problems, exercise etc... It’s called "IG Living". It's a FREE magazine subscription. It comes out Bi-monthly (every other month). It has a lot of valuable information in it. You can either read it online or have it sent to you.

Also, at the GBS/CIDP Foundation International's website you can get a couple of FREE booklets on GBS and CIDP. These booklets are crammed full of valuable information. Good Luck, here's the website addresses:

Good Luck, ""Stay Strong and keep a Positive Attitude""

Thank you so much for welcoming me and also telling me about the subscription. I appreciate you telling me what I need to expect or at least what you are going through. One thing I think GBS patients should know is it is ok to go on an anti-depressant. I am on Zoloft and it takes 4-6 weeks to take affect. I have my moments when I get pretty low and I am hoping my tears will quit coming so freely. I talked to a “former” GBS patient yesterday and she advised me I SHOULD push myself exercising. My GP said it won’t do any good and it might slow my progress down. Maybe you could tell me what you suggest?
I walk like a duck but I understand this will eventually go away. I use my walker all the time because I am so unsteady on my feet. I contracted GBS 9 weeks ago. My progress was so good initially but after being released from Rehab, I don’t feel I have improved at all, very discouraging.
Thanks for being available to answer questions and make comments and suggestions. Terry

This is already a couple of weeks old, so I'm sure your main body of data has grown significantly since the original post. But here's my personal input, fwiw.

1. I don't think there is an average for how long a person is in therapy. I was in the hospital for one month, and then two months in therapy. It was a sub-acute nursing facility.

2. See above.

3. Fatigue is a big thing. You have to be kind of careful, too, because it can come on quickly. You can be going along OK and then just give out.

4. Hard to answer this one. Yes, he can be independent again, but it varies with each person. Personally, I'm about a year out, and can do pretty much everything I used to do, just slower.

5. I think most people come home and start living their lives again. It's nice to have help, especially at first. Again, this varies considerably.

6. Both. Your body will get better, but physical therapy and exercise helps a lot. I think what type (water, etc) varies also from person to person. Oddly enough, I find my best therapy has been riding a unicycle. It helps my balance and leg strength, as well as being a general body workout. Also great for building stamina. Granted, if I had not done this as a youth, it probably wouldn't have been a consideration. But for me it's perfect. (Doesn't hurt my feet, either -- a big plus for me.)

In general, tell your friend to be patient and work through it day by day. It may take a while, but just keep at it.