Help me…My Mom is sick!
AnonymousAugust 8, 2006 at 2:55 am
My mother was diagnosed with GBS yesterday. I am kind of freaked out by this whole thing. Even though I have read what I have found on the web, I would like to see if anyone has the time to help me with some guidance, or answers to some of my questions about this condition. Her doctor has very positive feelings about catching her GBS at the “right” time, as well as positive feelings about her prognosis….Is this good? Also, I am a freelance musician living in Las Vegas, NV and the rest of my siblings (4 brothers and 1 sister) and Mom are in Chicago. Due to the nature of my work, I just can not get to Chicago until early September…..is that soon enough? This beautiful Lady is the reason that I am on the earth, and I want her to be herself again. I know that everyone who reads this will have their own set of problems, but a little bit of help will go a long way to helping me. If anyone that reads this lives in Las Vegas, NV my direct email is [email]firstname.lastname@example.org[/email], and my cell number is 702-595-8678. I appreciate that you have taken time to read this, and I hope I am not asking too much of you guys……
John Nasshan Jr.
AnonymousAugust 8, 2006 at 6:30 am
hi john & welcome,
if she has had ivig or pp, then the docs are doing the right thing. rest is very important. when you get there is when you get there. let your mom know that the recovery rate from gbs is high. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 8, 2006 at 8:57 am
I am sorry that you have to go through this with a loved one. There are resources for you, however. You started with our Web site and Discussion Forum. Good! Now, if you go to our Web site again and register your name and address (it is kept confidential), we will send you a packet of information that will address many of your concerns. The brochures and newsletter are written by experts in the field so you know the information is accurate! Additionally, you will receive our quarterly newsletter and other mailings. Please consider doing that – it doesn’t cost anything unless you wish to make a donation (no pressure).
AnonymousAugust 8, 2006 at 9:18 am
Your quick responses are very nice. I get an upbeat feeling from them, which is good because I didn’t sleep well last night, and I think I can tonight thanks to you. I will take the advice and sign up for the lit pack from the website.
Meanwhile, I guess you are telling me to just go ahead and love my Mom and think of her often, and stay in touch with her….so….. I will.
AnonymousAugust 8, 2006 at 10:26 am
Until you get a packet from the foundation, this information might help. One of our forum members SHANNON is from Chicago area and she is a liaison for the foundation. I don’t think she’d object if I post her email so your Chicago family can contact her. [email]email@example.com[/email] Give her time to respond because sometimes our liaisons are away at a meeting or involved in foundation business. For you, there is a Las Vegas liaison you can call named Richard Epifani (702) 254-3704 Give them both time to respond.
AnonymousAugust 8, 2006 at 12:39 pm
Welcome to our little family….everone here has/is either had GBS or a family member that has/is experiencing this syndrome. GBS is treatable but will take a long time to recover to any sigificant degree It will take a lot of time and patience from all of your family. Has she had any IVIG or PP treatments yet? Come back as often as you can and ask any questions no matter how small.
AnonymousAugust 8, 2006 at 3:05 pm
My Mom started infusion treatments last night. The best news I got today is that she is not wheelchair bound at this time, she is swallowing fine, and is able to use a walker (with assistance) to get up and down to the bathroom. Her doctor in Chicago is named Mircea Iacob MD, and he is optimistic. The docs have said that she is a “textbook” case of GBS, and Dr. Iacob is presenting her case in his lecture today at Rush Medical Center in Chicago.
The way that all of you have reached out to me renews my hope for our society. I had a talk with Mom this afternoon, and she is sounding much better than yesterday, she is able to laugh at my jokes, and she is very serious about getting some rest. I have been told that these are all good things, so I am able to smile for the first time in 48 hours! Again, thank you…all of you! I am grateful to be part of thsi important “family”!
Music Peace and Love………….John Nasshan
AnonymousAugust 8, 2006 at 3:09 pm
Hi John. Please get a hold of shannon, she will help put your mind at ease. she is very sweet and personable. so is her fiance ben, who has gbs also. keep asking any questions you might have or concerns also. we have been there and understand what you and your mom and the rest of the family are going through. please take care of yourself, so when you are able to see your mom it will cheer her up seeing a healthy young man. good luck with your music, we have a few wanna be musicians on here as well, if that makes you feel more a part of the family. take care and know your mom is in our thoughts and prayers.:)
AnonymousAugust 8, 2006 at 8:01 pm
I am recovering from GBS that was diagnosed on May 25, 2006. You were concerned that you are not able to go to Chicago to be with your Mom until September; do not worry; your Mom will still need you then as well. Recovery takes a while, I’m told. So, let your siblings take the first several weeks and then they will be glad to see you in September when you can get away from your work to be with your Mom.
AnonymousAugust 9, 2006 at 8:45 am
Hai John…..u said that ur a musician.thats great …………let ur mum hear some music every day when ever she wants……..that will give some comfort and make her mind take away from the present…..and u didi not mention when ur mom effected this gbs.any how the treatment has started and u said that she is recovering, thank god and ther docs will take much care as they have taken as a subject. And ur mom will be o.k when u will go back to see her in the september…………god bless her and ur family.
AnonymousAugust 10, 2006 at 1:16 pm
My Mom is doing great! As of yesterday (8/9/06), she has begun some physical therapy. She ate breakfast today sitting up, so it appears the IVIG is working. It’s just too bad that hospitals are the worst place to try to rest! Her Bells Palsey (spelling?) is slightly better, and her speech is improving a little. She is using a walking frame, and laughing at my jokes even though she is incredibly tired. Who knows, maybe she will even sing and play piano again! I want to thank all of you for your well wishes, your concern, and all the love that is so evident in this forum.
Music Peace and Love………..John
AnonymousAugust 12, 2006 at 5:14 am
Hi John and Welcome,
You have come to the right place for answers to your questions. When I was first diagnosed it was a scarey time for me and my family. When i was finally released from hospital I found this website. All my questions and fears were answered on this forum. It is a great place to come and express how you feel and ask questions even if you think they are silly. Chances are someone has already asked the same question.
Best wishes to your mum. She will be in our prayers in Australia.
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