Thanks for the responses

March 14, 2007 at 6:41 pm

Thanks for all this info — I had a feeling that I should remain with my Zetia (very low dose) and keep up with my diet control –do take a multi along with some vitamin C — Having lost 50 lbs during the first year I am now back to my “marriage” weight — and doing well

Heading for 4 year Jan and now starting to walk with loftstrands and attacking stairs.. (still with help) all in all my progress continues slowly but surely.Hands and feet trail behind but now dress myself (less buttons!) take care of my bathroom needs , thinking about getting a van to drive (passed the tests) so things are looking good.

This site has truly been a blessing for me .. I should know by now that the steady rehab,pool,gym work does the trick. As we are about to become grandparents for the first time — others have been eager to help in anyway possible — glad that I took the time to inquire.

as the say “Keep on Keeping On

Robert Jones

thanks for the responses!

January 6, 2007 at 10:14 pm

Thanks for everyone getting back to me so quickly! We actually have a doctor who is treating my mother telling us that he does not think it is GBS because of her bowel problems. the whole thing is just a big mess….all of us kids want to desperately move my mother to a better facility but my dad does not want to move her too far away. (which would be about 2 hours) and all of us live within 3 and 4 hours from home as it is.

She is making steady progress in her walking, which is a great sign. but i fear she was set back so far because of her bed sore. she went a month without PT because of the bedsore and its complications. is it possible that she is set back for good? we called an attorney and we were told we have to prove long term damage. Its ironic that she was hospitalized for GBS but her biggest medical problem as been the effects of a bedsore. my family lives in Johnstown PA if anyone knows someone we may be able to talk to.

thanks again for all your help

Thanks for the responses…

December 26, 2006 at 10:53 pm

Hi Guys… and Carolyn

Thank you for taking the time to respond. The links are great information / references. I haven’t completely explored them… but I spend a lot of time researching so I’ve added them to my collection. — sigh — seems to be my purpose in life for the last 10yrs or more.

My brother seems to be progressing — after 4 days on the IvG (?) treatment he is able to lift his legs somewhat — it takes a lot of effort though. He thinks they will be transferring him to an intensive rehab hospital — a sort of “bootcamp” rehab. I am learning that like all the other autoimmune diseases this one is highly individualized. I guess we will see how the rehab goes.

Carolyn: I am so sorry that you’ve experienced this TWICE. The nuerologists told my brother that they didn’t know of a patient that had a reoccurrence — so that’s disheartening to hear. I think my brother’s experience was also triggered by stress. He’s a nice guy that has been doing too much for too many people for too long!!! I also have autoimmune issues — nothing compared to GBS though — and mine were triggered by stress too. Is cortisol the culprit?

I’m the big sister… I’ve ALWAYS looked out for him — so he has no choice as far as me getting involved in his care. Ha!

I’m sorry that you don’t have the support that we all need when we’re not feeling well… and as far as lessons to be learned… ??? — ah well, that’s an individual thing too. I determined that one of my lessons was about setting “boundaries”. I hope you do not let it scar you emotionally… resentment is a slow poison.

Again… thanks to you all!

Best wishes…

Thanks for the Responses

November 8, 2006 at 8:15 pm

Thank you to all for your helpful responses. This is terrific forum and you are all so willing to help! I’m finally getting to the point where I don’t have episodes of the “Why Me?” syndrome, and being able to share experiences and receiving insight from those who know is a huge lift.

I will be attempting to reply to each of you individually, but be patient as I am a forum rookie.

Thanks Again,