AnonymousMay 8, 2006 at 12:18 am
my brother made an interesting remark to me last night. He was watching something on discovery health the other day, and there was something abt GBS on. He says to me I didnt know GBS was so rare and so serious. This is 5 yrs after the fact. go figure how ppl I know and family can still be so ignorant abt GBS after all these years
AnonymousMay 8, 2006 at 9:50 am
Don’t be so harsh on your brother. In todays TV society, it isn’t real unless you see it on TV. It is pretty funny though, He lives next to you and doesn’t know it’s serious, but on the distance of TV, it becomes real. Maybe you were too good of a patient. If only you complained more.
AnonymousMay 8, 2006 at 10:01 am
I think people are well meaning but if it does not happen to them (or they are not a caregiver directly) they really don’t understand.
Even after explaining GBS to everyone, some people in my family still think I had some kind of back injury because my symptoms started with severe pain in my extremities and evenutally moved into my spine and up to my shoulder and neck. Just last February, my grandmother told me to be careful picking up things because I would injure my back again.
Only my husband (my primary caregiver) and my dad really understand (dad had a similar but unrelated experience and volunteers in a Vet Hospital on the spinal damage/paralysis ward).
AnonymousMay 8, 2006 at 10:18 am
I am in total agreement with these posts. My (large) family didn’t want to see me as someone with a syndrome with physical limitations. They expected me to do errands for them and cook huge meals at family gatherings. It upset me a lot that they didn’t notice, but I had to realize that they just didn’t get it. :confused:
The thing about pain is that people cannot see it easily–especially doctors. A patient may look as if they have some vitality and good coloring, but may be very tired and hurt all over. My friends treated me the same way and wanted me to visit them, but they couldn’t get over to see me. One thing about this disease process is that many of your friends drift away and you find out who the true ones really are. It is a tough way to do it, but it happens. At least we pick up a lot of buddies all over the world who are just like us.
The GBS Foundation had a project last year to send out posters to ER rooms across the country telling them how GBS presents and what to do when they notice the symptoms. I just hope the nurses/docs read them.
AnonymousMay 8, 2006 at 12:23 pm
Frank and I went through the same situations. It got to the point that we were so tired of telling family and friends about GBS/CIDP, that we then started to tell everyone his illness was a cousin of MS, they’d then say “Oh”
but he doesn’t look sick. Arrrrrrrrrrrrrrrrrrg.:mad:
Family seemed to be the worst of the lot.:mad: Now that he passed away from an unrelated illness to GBS/CIDP, they all say, my God we didn’t know he was that ill. “Duh people,” what the hell do you think we were trying to tell you all these years. We told them about his GBS/CIDP and his other illnesses, that I truly feel were exascerbated by GBS/CIDP.
Oh the other thing that alot of them didn’t believe was the fact that Frank got GBS/CIDP from that damn Flu Vaccine.:mad:
AnonymousMay 8, 2006 at 1:39 pm
I have had much the same problem as everyone else. People just can’t grasp how serious GBS is until it happens to them. I wasn’t guilty of this prior to getting it, I had simply never heard of it so didn’t have an opinion one way or other. I have many people who act as if I am in this chair because I am to lazy to walk!!!! Well I would trade places with any of them.
AnonymousMay 8, 2006 at 4:29 pm
Well My new family DR I saw today asked when was my last tetenus (sp?) shot was I said I don’t know then mention my last flu shot how it affected me. At work people don’t realize and sometimes myself how CIDP affects my body. My Neurologist said that on a scale of 1 to 10 and 1 being good I am a 2. So does that mean I should get my strength all back? I forget sometimes what the effect the residules have on my body if I am improving so much in my legs. Maybe somebody can remind me how long after I improve will I get most of my strength back or will I always have some weakness?
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