NOW what happening??

I have had similar experiences. It was not directly after PT, but the result was the same. Everytime I went vertical, blood pressure dropped off a cliff and I blacked out.

hope,

a gbser must be handled w kid gloves re: exercise & the like. too much & you see the result. make sure the pt & ot folks get some lessons on pt, ot, & gbsers before you let them do him in again. they obviously are not in the know no matter what they say. on the orig board [that’s 2 boards ago] a guy died from too much pt. take care. be well.

gene gbs 8-99
in numbers there is strength

Listen to Gene! You must advocate for your brother’s care, even if a family member must be there 24hrs a day. As you’ve become educated about GBS so must the medical community where your brother is. And you can do it!! Keep coming back with questions and don’t forget the resources at the Foundation as well as your local liaison. Best wishes 🙂

hope make sure your brother is taken care of by pt, ot who have great knowledge of this disease. he can go backwards without the correct therapies. too much is bad. i myself would have a family member stay with him until he is better. i have had events like that, they are scary and can really be dangerous as you well know. he is in my thoughts and prayers and keep asking the questions and double check the credentials of the pt and ot people. right now less is best, assisted movement until he is able to stand by himself. take care.

Hope – I agree with the others – although I had Miller Fisher and am from Tampa (not a small town) the hospital is a teaching hospital & the Rehab dept. treated GBS/MF patients like stroke victims exercise, exercise, exercise- too bad I did not know any different I might be better today (I even ask my PT dept. and they more or less had the attitude ‘we will probably never see anyone like you again so why research ‘the rest & nap’ idea – because both are so rare – most PT do not look into what to do – it causes more harm than good.

[QUOTE=hope]visiting with my brother yesterday in rehab (GBS) He has 1 hr OT then 1 hr PT right after that really worked hard in OT then directly to PT was coming down the stairs and BLACKED OUT! Everyone came running Oxygen EKG blood work IV etc etc they tell me it was Vaso Vagal episode body shut down blood pressure dropped
Was this TOO much rehab ?? Does this happen often? Has anyone else experienced this ?
I am so lost
Hope[/QUOTE]
Hope forgot to give you my email address [email]saswmc@tampabay.rr.com[/email]
Please feel free to email me and I will give you my phone # to talk.
Sally

Hope,

Call the foundation 610-667-0131, they are EST so they will be there during normal business hours. They can get you in touch with your local liason. I am in Ann Arbor but if there is anything I can do to help feel free to email me [COLOR=blue]jerimyschilz at hotmail.com[/COLOR]

Jerimy

I made it very clear to my pt, drs, etc. that I would attempt to walk fine and then literally hit a “wall” out of the blue! My PT understood and took that into account when discussing my workout (which, by the way never went past a 1/2 hour!) I have seen a dramatic increase in time span before the “wall” sets in but it is still there just the same. Take heed to the idea of ensuring enough rest.

Just to echo what others have said…

When I was in the hospital they came in usually for OT first and sometimes they came in for PT right away. At first I was doing what they asked of me and overdid it having the same type of thing happen. Then after a couple of weeks I realized it was just too much and I had to take some of the responsibility for telling them its too much and they need to come back later. My parents also spent a lot of time with me at the hospital so if I wasnt strong enough to say it they told them to come back later.

Sometimes they just dont know how hard the person works in therapy, how long the session was, how they are feeling that day etc. So they need to just be told, he/she cant do it right now and please come back in a few hours. They will be more than willing to come back later on if thats what the patient request. If not then the patient needs different therapists who understand GBS better.