my son has been in hospitals and care homes since the first of April. He has not shown much improvement except that it has not hit his trunk or lungs. He has had 5 plasmapharesis therapies so far in a series of 10. He is very depressed and is talking to a psychologist but it is not working. I would appreciate words of encouragement from other patients so I can take the notes to him to try to help him overcome his depression about this illness. We tell him it takes time to heal but he is impatient. I think if he hears from others who are involved in this fight to recover it might help him. Thank you
My daughter also has GBS she will be 30 in August she was not affected in the trunk or the Lungs which I feel grateful. He just needs to stay positive His body will recover when it is ready but in the mean time do agrees therapy and push hard my daughter sets goals every day for 10 minutes longer she is exhausted but push any way I think it makes her feel she has some control. My main problem is her hallucinations that there are snakes in her bed and spiders she get angry if you tell that what she is feeling is not there. She has even try to kick me out of her room. We are on week 6 and she is able to sit in a wheel chair and squeeze her legs a bit every day is an small improvement. Keep it positive it is hard not so successful at time myself
Thank you for responding. A good idea for him to set a daily goal. He has intense therapy six days a week. I don't think he has hallucinations., but is feeling why me? Does she need a lift to put her in and out of bed? He does and it is painful.
and he has to have a catheter and diapers which he feels is very demeaning. We are trying to keep him positive but he is still depressed (who wouldn't be?)
Hello Iorac,
Mysister is in her 3rd month of GBS. She was on a ventilator and suffered terribly. 3 months on and she is leaving rehab next week but unfortunately will be in a wheelchair. Tell your son to hsng in there. My sister, Maria, also hated the fact that she was helpless and had to be cleaned etc. has your son not had an IVIG?
So 2 months and is he in rehab?
Please read my sisters story too.
Annaa
Pardon my ignorance but what is an IVIG? He is in a rehab place but they are only giving him one hour of therapy a day. He may be moved because the docs say he needs at least 3 hours a day. He gets plasmapharesis once a week. This is week 4 out of a series of 10. He sits in a wheelchair but has to be put in and out of it by way of a lift. We see a very small amount of progress. We see him 2 or 3 times a week.
Intravenous immunoglobin (IVIG) this is the treatment that targets the antibodies in the blood that are reacting to the peripheral nerves and damaging them. It is a 5 day treatment and should happen shortly after diagnosis.
My sister is also in a wheelchair and has to be lifted using a hoist but can stans for afew seconds with alot of help.
It is a very frustrating illness. Staying positive is key. GBS= Get better slowly.
My sister told me if i say that to her one more time she would hit me hard!!! She says its patronising.
Keep me posted on your son. 
This is a very calming affect talking to people. Hope your son stays positive. He will get there in the end, as will me sister.
thanks for the info. Yes he had that right away. Now he is getting the plasma therapy. He is in a lot of pain, but tries not to take pain pills because they bind him up. He is on a muscle relaxant--which does relax his muscles but I don't know if that helps or hurts him. We try to keep positive too. He can sit up in the wheelchair but absolutely can not stand YET!!!!
We are always on the look out for that kind of progress. That is wonderful that she can stand even for a few seconds with help. Where are you located? We are in Southern California where he is getting excellent care.
I had the plasmapharesis therapy... it is a physical method of removal of the antibodies attacking your mylene sheet. replacing the plasma with albumin. You will not have the IVG if you are doing the plasma treatment. I had the plasma treatment every two days, for five or six treatments. I did catch it early I believe.
It does get better than where you are now. I came to the realization that there was nothing in my control and that my body would recover on it's own schedule. Stay positive, it is not his fault and not something to feel ashamed of. He will need to depend on others and know when to ask for assistance.
I wish a full recovery for you and your son.
My daughter had the the hoist once but now she is able to sit on the edge of the bed with lii
Title support and they use a slide board to get her in a wheelchair she is able to use the tilt table and has put pressure on her feet while being on the tilt table she is up to an half hour
And says it fun they got her to 86 out of 90 position and handle everything so we’ll. but know she hates me is hallucinating that snakes are eating from the inside out and I have to show here that it is not happening then she yells at me. She also is in a diaper and is not happy. Her therapy is 3times a day two pt for and hour and 1 op for an hour. He needs more than 1 hour a day
Hang in there we feel you pain
that would be nice if he wouldn't need the hoist. it is so uncomfortable and most people outside of the rehab center (meaning hospital when he goes for his treatments) don't have a clue as to how it works. I don't think he is using a tilt table--I will ask him
Penny, sounds like my sister is at the same level as your daughter. She also finds it easier to stand on “the rotary” a high thing that she pulls herself on and rest her knees on for support and can be wheeled around. Will be coming home with us next Wednesday. Will let you know if it is helpful and easy to manoeuvre her around.
Wish recovery wasn’t so slow. Sounds like this is the standard route for recovery.
My sister also will have to wear diapers when we go out and about but will try using the sideboard. Doesn’t help she is a heavy girl.
Lorax how is your son doing?
http://www.focusondisability.org.uk/turntables-swivels-disabled.html
The fotar stand is very good
The hoist I used with my mother it is a sling that does under them and then the wind it so is in in the air and then it is rolled over the the chairs and lowered. They did it once but th en used the slide board . My daughter is heavy also because she has Cushing syndrome but still uses the slide board.
Just got back from the hospital her hallucination are minimal now since they took her off the pain patch. All in one day she lifted her leg has less pain and did not ask for meds all morning was able to side on the side of the bed and slide to the sideways down the bed with no assistance
Seems like all of a sudden things are starting to kick in hoping things will continue to improve
Is your son in a rehab hospital
he is in a rehabilitation center. when he has his plasma therapy he has to be transported to a hospital and brought back the same day. kind of a hassle it takes all day. if he were to stay overnight in the hospital he would lose his bed at the rehab center and we would have to try to find another place for him.
that I great news. we are hoping that things start improving with my son soon.
Penny said:
The hoist I used with my mother it is a sling that does under them and then the wind it so is in in the air and then it is rolled over the the chairs and lowered. They did it once but th en used the slide board . My daughter is heavy also because she has Cushing syndrome but still uses the slide board.
Just got back from the hospital her hallucination are minimal now since they took her off the pain patch. All in one day she lifted her leg has less pain and did not ask for meds all morning was able to side on the side of the bed and slide to the sideways down the bed with no assistance
Seems like all of a sudden things are starting to kick in hoping things will continue to improve
My daughter today has able to kick here legs she say she was restless and kick like crazy then turned on her side and bent her knees with out thinking what she was doing. My experience she moving her feet a lot with out realizing it
WARNING. He you see that they are hallucinating get them off the patch or morphine. That was one of the most devastating thing I went thru with her She believed it and it was painful to watch her gonthru such a horrible night mare very very traumatic If she had a sharp object I don’t know what she would do
Erin only had it from the chest down no lungs. Some vision problems taste were the first to come back No Lungs and no arm damage
Yesterday my daughter could lift her leg an inch. Today a good full lift 16 inches
It starting to move quickly
we have noticed a change in our son too. He put his hand up to scratch his nose without realizing it!!! Hope they start to improve quickly That is great news.
Penny said:
Yesterday my daughter could lift her leg an inch. Today a good full lift 16 inches
It starting to move quickly