New to GBS, Questions and need help

hi george & welcome,

keep letting her know that as bad as gbs seems the recovery rate is high. tell her the things you have learned here from us, been there gbsers who know the score. good attitude is important. her treatment sounds excellent. her age is not a plus factor. find out if she is in pain. if so, she needs neurontin. keep us posted on this on this thread. keep an eye on the peg tube for infection. find out what she likes, ie. listen to music. then make it happen. no one knows how long nor to what degree any one gbser will recover. prepare for the long haul. take care. be well.

gene gbs 8-99
in numbers there is strength

George and Donna, Sounds like you are on the right track. As you will hear over and over, there are no definite time frames for recovery. Every post you might read will be different. GBS is scarey because it runs it’s own course with each individual so differently.
Even if your mother is unable to respond, she is aware of everything you say and do for her. That’s very important to know.
How early did they diagnose her?
Our prayers are with you. Be patient and be there for her.

JayDee

Hi George,

This is a very difficult time for your mom. Not being able to communicate is one of the most distressing things she is having to deal with at the moment. Talk to her about everything they are doing to her, everything they tell you – doctors tend to talk around the patient or ‘down’ to the patient. There is a thread called “Things I wish they knew” (something like that), Iwill bring it to the top for you. There may be one or two posts on there that may be of help, or just interesting for you to read. What might be a good idea is to read some of them to your mom, and see what her reaction (as much as you can) is to them.
Also, why did they say they were doing IVIg? Just curious if they felt the Plasmaph. didnt work.

Hi george, It must be hard for you, but I just went thru it 3 months ago I’m just 22 yesrs old, and the only thing that kept me going and working hard was I had someone that I don’t knoe come to the hospital and here is his story: he had GBS 3 years ago, was in in a como on a repirator, couldn’t breath, talk, walk, stayed in the hospital for 3 months and he kept on fighting knowing it will all go away, and recovered and is now like before maybe even better, once I heard his story I relized that I can do the same and stay strong and get thru it, and today thank god I’m a much stronger person, so keep your spirits up, it will only get better I promise.

George,
I would suggest contactinthe foundation about the communication cards. From what I understand there are things written up on cards to help you communicate with your Motherin law. Also if you can find a liason in the area to visit or someone who has recovered so your Motherinlaw can see that she can get better. The foundation phone number is 610-667-0131.
Your family are in all our prayers,
Cindy

Welcome George and Donna,

Sorry to hear about Violet’s GBS.

Something positive you can do for her is to read all you can on these forums and the GBSFI website. Also request the information packet – both patient info. and doctor’s info. packets, free to you from GBSFI. It has a wealth of info. about GBS that will be helpful to you.

Reading information to Violet about GBS might help take some of the fear out of it for her.

Make sure the hospital is addressing pain – most GBS patients have pain and it can be really terrible, especially if she can’t communicate directly with her doctors about it. She will need you as her advocate.

Make sure she gets gently physical therapy each day – range of motion exercises are important to keep her tendons from shortening, so she won’t have disabling problems from it later.

Be sure she is turned frequently to prevent bedsores. Basic, but often overlooked. You can enlist her physical therapists to be on alert for signs of bedsores too. These are easy to prevent, but very difficult to treat and get rid of later.

Personal hygenine often takes a backseat in ICU because other problems take priority. Your wife can help her mother by doing simple things like rubbing lotion on her skin (if it doesn’t hurt), cutting fingernails and toenails, shaving her legs and underarms, applying deodorant etc. The nurse and aids are often too busy to worry with these niceties, but they make the patient feel better.

Many, if not most, GBS patients get depressed. Discuss this with Violet and with her doctors to be sure she gets help, if needed.

A visit from a previous GBS patient would probably be a boost to her moral, so she can see that she will get better. The GBSFI can put you in touch with a local liason who can arrange this for you.

Meanwhile, you may want to read the new book by Drs. Gareth Parry and Joel Steinburg called “Gillian-Barre Syndrome”. It has a wealth of information that will be helpful to you and to Violet.

Best wishes,

Suzanne

Hi George & Donna:

My heart goes out to you and your mom. If your mom is able to blink once for yes and twice for no then perhaps you may be able to make use of a modest piece of equipment we used with my father. My dad was unable to move much below his eyes for the first 4 months but he could raise and scrunch his eyebrows. He would start moving his eyebrows up and down really fast and we asked if he was trying to tell us something. We asked him to raise his eyebrows up really high for a “yes” answer and to scrunch them up tight for a “No” answer. At first, while he was still unable to see, we would just ask him if the word started with “A” or “B”. It was tedious and took a long time and he got tired and frustrated easily. We then made a cardboard sign that had the letters of the alphabet in 5 rows:

ABCDE
EFGHI
JKLMN
OPQRST
UVWXYZ

We would then point to a row of letters and ask him if the first letter of the word he wanted us to know was in that row. He would answer yes or no. Then we would, depending on his response either move down to the next row of letters or start pointing to the row he had indicated the word started in. Lengthy process but we were able to get key information from him in this manner that he otherwise was unable to express. In this manner he was able to indicate that he was in pain or needed to have a cold cloth because GBS had broken his body’s thermostat.

It worked fairly well for him in that horrible initial first phase when your loved one is so locked up inside their own body. It was a slow but effective way to make sure we understood what he needed.

Hugs and More hugs for all of you.