Was lurkin’…now new member
AnonymousDecember 13, 2006 at 7:01 pm
Hi to all,
I was looking for more info about GBS and “found” this great and informative site. I guess I’d better do the explaining part now.;)
Back in mid-July(2006) the wife (Denise) was having mid/lower back aches, stiffening of the legs, tingling in the hands/feet. She had an appointment at the MD’s earlier in July and mentioned this to the Dr.. She wanted to do an MRI of the neck/skull (previously had bouts with breast cancer) and this was done. Results were negative (whatever that meant).
A week later she had her yearly appointment with the “oncologist” (chemo person) and SHE was upset that Denise was struggling to stand up straight or walk very fast. SO, she set-up a “full- set” of MRI’s and pushed our “primary care Dr” to get it done. We’re both happy that happened…they found a “cyst” on th spinal cord. SO, things started moving then for the operation and recovery.
All went well, for this operation and she came home 2 days later. She was getting around fairly well after a few days but then a strange thing happened. It appeared that she was getting “wobbly-legged” and was going backwards. So I called the surgeon and he said to try(ordered) some “steroid pills” to help this condition and call again in about 2-3 days. Well, I called him 2 days later and told him, “it ain’t working and she’s can’t walk at all now”. Told him a few other “things” about this reversal and he suggested “direct admittance” to hospital thru the ER. It took the surgeon, nuro Dr and a few others(big conference of all the chiefs) in the hospital to determine that she had GBS AND what would be done. So this is the “how” it came about for Denise. There’s more to this story, but this is not the time.
As of this moment, she’s getting around the house(still going to re-hab) with her cane (hubby beater) and is very slowly progressing back. She’s not back to “normal” by any means, but she’s gettin’ there. It’ll still be “months” before she back to normal.
The info from this site and 1-2 others have been a great help to “us” about GBS. For me (the hubby) it’s been a source that I needed for asking the “right questions” and getting the right answers. With this info and reading many “research papers”, the Doctors were impressed that I understood this problem and all the “lingo” that they used to describe this syndrome. I wanted to keep pressure on them to do “all that could be done” and even suggested some GBS/CIDP sites for them to “look over” for reference. I found out that the “attending Dr.” at the Re-hab place went to a “conference” down in Washington D.C. because of my wife’s GBS………and ME asking all kinds of questions (even about doing something like using oxygen during the IVIG treatment/s) and showed him MY simple little “test” to show patient improvement after treatment.;)
Well enough of that, I’ll be hanging around on this site…now that I’m a member. But to those “Senior Members”…Thank You, for putting this site together for “us” that need this information.
AnonymousDecember 13, 2006 at 7:24 pm
I am so glad that you have posted, and also to hear that your wife is doing better. Cancer and GBS …….. Wow! I know there are a few members who have had the same (and other illensses), and I have such respect for all of them for surviving and getting through it all.
Well done on giving the doctors all the web addresses and on trying to keep them informed, it definitely seemed to have helped!
AnonymousDecember 13, 2006 at 8:14 pm
Welcome to your little GBS family! You’re an awesome hubby for hanging in there through your wife’s illnesses! You don’t deserve to be beat with the cane! 🙂
Please give Denise my regards and let her know she’s not alone.
From a fellow caregiver (to my fiancee Ben),
AnonymousDecember 14, 2006 at 10:26 am
Thanxs much there “ali and Shannon” for your encouragement and thoughts.
Let’s just say…It’s been “eventful” over the last 10 years or so.:rolleyes: The bouts with breast cancer were really tough and then this GBS thing came along, but since we’ve been thru so much before this is not “quite” as bad for us…….mentally. It may not sound right, but I think you understand.
From the start of this GBS, we got a little lucky I think. From talking to the Dr’s, Denise’s GBS was an early stage compared to what they normally have when a patient comes to the hospital. Those patients are usually on resporators/ventalators and are not in good condition at all. They seem to have waited too long and this seems to be the “why” the Dr’s were a little behind the curve(most have never seen this at the beginning stage/s). But they made up for it and are happy with her progress so far.
As I mentioned in my 1st post, Denise had the IVIG treatment and about a week later she was moved to a Re-Hab hospital. At that time she was coming back but as things happen…after about 2 1/2 weeks she had a “re-lapse” and then back to the hospital for another IVIG treatment. Then back to Re-Hab (again…for another 2+weeks) and she’s been home now for about a month. The only thing we can figure out about the re-lapse… maybe we/she were pushing too hard and was tiring herself and the body out. She still goes to “outpatient” re-hab(now) and I make sure she does her “in-home” workouts.
We’ve been able to go out for lunch/dinner and a close friend has taken her “shopping” recently. It may sound like we’re really moving fast here, but it’s not all that fast. But I find “small improvements” from Denise every couple days and then I mention these improvements to let her know…that I see these things and that she IS improving.:D
Guess I better get off the computer……she’s starting to “whack” me with her cane. Something about near 60 degrees today…go for a ride on your motorcycle….I’m gettin’ tired of lookin’ at you!!!!!:eek: 😀
AnonymousDecember 14, 2006 at 11:39 am
Welcome to The Family, Turtleman and Denise. Kudos to your wife for sticking it out after battling Breast Cancer, Denise you are one brave and strong woman! And Congrats to you Turtleman for being there for your wife, you are a wonderful husband.
GBS stands for getting better slowly, please make sure Denise gets plenty of rest, after all it takes alot of energy to smack your husband with a cane!!!:D i know that for a fact!!:)
my guess Denise didn’t suffer a relapse but just went into another of the stages of gbs, since her gbs was caught(because of a very in tuned husband) early, the gbs still had a number of stages it normally goes through before the turn around point. getting the ivig that early was similar to giving it a knockout punch, good enough at the moment to stop it in its tracks but after a rest it gets back up and continues on its mission. getting the second series of ivig stopped the progression for good and now comes Denises’ time to rest and then get up and continue on with life.
Rest and knowing limits is really important in recovery. A positive attitude and hubby smacks are always a big help, also! Take Care.:)
AnonymousDecember 14, 2006 at 4:10 pm
Just wanting to say hello and welcome you to this family. I am curious as to where you live – you don’t have that on your profile, and what is your name or do you always go by Turtleman? If you have read many posts here, you know I am the inquisitive one… fairly nosey :p And at least we know your wife’s name is Denise – say hello to her from me.
You all have been through a lot and hopefully things will settle down now. I remember a phase of my recovery where my mother would ask me every day if I felt any better – this drove me crazy as I could only tell week by week. This illness sure teaches a bunch of patience, but we occassionally lose it and this is the place to vent. We will always listen to you!
AnonymousDecember 14, 2006 at 6:31 pm
To Chrissy and others,
Sorry about not showing “stuff” in the profile…I haven’t figured that part out yet. Sorta ‘puter’ illiterit or some sort of thing for an “ol guy”. I’ll try to get that done shortly.
My name is Barry and we live in SouthCentral Pennsylvania.
As for the “turtleman” name it comes mostly from an e-mail account that I use and a way for me to remember the account name/log-in numbers and all that. But it also came from being a “Turtle”. Are YOU a Turtle???
angle2ndclass22699 does make a good point here. The Dr says she has “acute GBS” and she hasn’t gone to the “Chronic”. He gave me some explaination as to the “why’s” of this and since the 2nd treatment/re-hab stuff Denise is coming along at a steady rate. Nothing flashy, just steady. But like others, she had to have a couple people move here around while in the hospital but as time went by she could help. This was one of the first signs of recovery.
I’d say more…but I just got “whacked”(:confused: ) to get off this thing…taking her to the hairdresser for something or other.:rolleyes:
Barry AKA turtleman21
AnonymousDecember 14, 2006 at 9:07 pm
OK, we’re back from the “hairdresser thing”.:D
Maybe someone can “steer” me in the right direction (clicks here…there) to use the “profile feature” to add some more info about “us”. Maybe I missed something while trying to “sign-in”.:rolleyes:
I know some may think from reading my first couple of posts that I’m taking Denise’s GBS a little lightly…but I assure you, that is not the case. I’ve found that if “I” am not positive and honest with her about these type of things, she wants to go down that “depression” road. She also knows about my great curiosity for finding answers to things that I have little or no understanding. I am a “voracious” reader(plus a lot of useless triva) and this quirk has been a great help with “our” medical problems over the years and for asking all those “dumb questions” to doctors or anyone else involved with our case. Seems to upset them from time to time.:D
For instance, I was given the spelling for GBS and told to look on the internet………well, I did! Found a site that had “research papers” (463) and read thru about 22 of them that night. Had to learn a lot of new words and about the various “stages” of GBS/CIDP and the methods used for treatment. Not a fun reading time for me…but I had a lot more answers than before, but I also had more questions than before. About 2 days later the Doctor was there for his “rounds” and I was asking my many questions. After we talked for about 15 minutes….he asked, how did you get up to speed so quickly with so much understanding??? I just told him, I’m just a little sponge!:)
Perhaps the biggest “mental” thing that helps us both has been the many years we’ve been riding motorcycle/s together. Our travels have taken us to many places and some trips are easier than others. But the “hard” trips (bad weather/mechanical problems/road hazards/delays) gives one a certain ability to overcome one’s personal trouble of the day…let alone for a whole vacation trip(or other personal problems). It’s starting the journey and enjoying the life of this journey. Generally speaking….the near perfect journey’s are NOT the most remembered, it’s the one where you were cold, hungry, wet, hot, late or whatever and what YOU or someone else did or said at the time/place. These experiences make one a little tougher, wiser and humble.
Ok, enough of this stuff for now. I’m grateful for the welcome from the board members and maybe I can contribute some meaningful information or thought from time to time.
Barry & Denise
PS: found the need info for “profile”….or how I stumbled into it.
AnonymousDecember 15, 2006 at 9:19 am
Just read your thread, just wanted to shout out to you with an invite for when Denise is ready to ride again. Me and my hubby are in York and ride. Love to go for a jaunt and meet up with you. Where in SC PA are you?
I had GBS in 1979 and have recently (past year and a half) have experienced Post GBS, lost some feeling and function in hands, arms, feet and legs. So now I ride on the back only. Not enough strength to hold her up and throttle with out pain.
Also if you feel it would be of benefit, I have had years of experience with this thing called GBS and would be happy to chat Denise up.
And it sounds like you and I have something else in common in our search for a “wealth of useless knowledge.” Others might think it useless, but I like reading, learning and growing my ever expansive base. And it has served me well as it has you with your search for info on GBS for Denise.
Anyway, feel free to email me, or have Denise when she is ready, at [email]firstname.lastname@example.org[/email] and perhaps I can help in some way. Love to help!
AnonymousDecember 15, 2006 at 2:25 pm
Thanks for your info. You know… inquiring minds just want to know. And now it sounds like you’ve found biker friends!
You can click on anyone else’s name and see what they have posted about themselves – try on mine 😀
P.S. You may notice on most of us our join date is May 2006. This is because this site crashed and had to be rebuilt.
AnonymousDecember 16, 2006 at 9:45 am
SO, fellow rider/s(Natalie) AND really nearby (same town:) ) I’ll be sending you some mail shortly. Today and tomorrow are looking good for a ride and Denise was thinking I should get “outta the house”….wonder why???
To Chrissy: yeah, I noticed this stuff about the dates. I figgered out the rest of the stuff, I’m just a little slower than some. Checked you and Nat…mmm, couple more people with an inquiring mind.;)
I got the profile filled out the other day and then went back later in the day to check the site…mmm, my posts were gone. Maybe that happens when one “edits” the profile but got on today and all is back to normal. Not being a “smart” person about computers…….wasn’t sure if I offended the electricity in the program or just had too much “eye-stareing” static from the keyboard under my fingers???:eek:
As for Denise, she’s just “chuggin'” along with her PT/OT stuff and as I mentioned before, I see her attempting to do many more things on a weekly basis. That’s a very good sign for her….but it scares me from time to time. Mostly the walking around the house and then trying to do something that requires a LOT of balance. I just hate to hear that “woops” from her as she leans into a wall or catches her balance back.:eek: BUT, that’s the way it is.
As for her getting back to “riding HER motorcycle”….maybe till mid-summer at the VERY, VERY earliest. Not trying to push her to get back on the bike, besides it gives me another bike to ride….purely for maintainence purposes, you see. I’m not sure she’d want to “sit behind” me on the big touring bike again but maybe she’d see the benefits to it. But it IS one of 3 her “goals” and it may be the hardest for her to get done. She loves to ride and use the time to “get away” and refresh herself. She’s learned well about these aspects of “ridin’ motorcycles”…sorta like a Zen thing.
I’m happy for the chance to “talk” to a few members of the board and I hope not to bore you with my lengthy posts. But this is my only outlet for this type of conversation. Our many friends are really understaning about this GBS but this board helps not only the one afflicked but the person/s who have to live it every day. I appreciate all the responces.
So, now I got laundry to do……maybe I can check the motorcycle while the washer is washering.
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