Need help getting the word out

This topic contains 7 replies, has 7 voices, and was last updated by  Karen6542 9 months, 3 weeks ago.

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  • #7915

    Anonymous

    Hi, Thank you for your replies. I did not know about this forum untill i started a web site of my own to help speard the word about GBS.([url]http://www.akkerfoundation.com)[/url]. We are going on our 5th month of this and things are moving slow for her. We have had our share of ups and downs along the way. I’d write all the detail, but it would be about 2 days of reading. Our biggest problem was finding info on GBS, One day she was fine and out playing and the next she could not walk, I had NO idea that GBS was out there and that it would not only change her life (our lifes) in such a way that things may never be the same for her. We go to the Hospital 4 times a week and spend hours in OT and PT. She is now just out of her wheel chair and learning to walk again. When we where in the Denver Childrens hospital they told me that she would be in the wheel chair for 6 months or longer. So for the most part she is doing better then we thought she would. Six month before all this happened she was attack by a pitbull and i thought at that time that was going to be the worst thing that would happen to her, in her life time. Was i so wrong! Some mornings she goes though such pain that it just breaks my heart to see her that way. She keeps up a good fight and is moving forward. We have gone though some setbacks, of her gettin the flu or the bug, and she is a fighter and continues on.

    The things that keep running though my mind is why? I don’t understand how such a thing can happen to someone. When, if ever this will be over for her? Will it return and if it does when? Does anyone fully recover or will GBS be part of her life for ever? Doctors can’t answer my Questions they just don’t know.

    Thanks, Akker

    P.S. If any one could help by adding any and all info on GBS to my website. I’m not sure where the site will go but it’s what i thought I should be doing, To help spread the word about GBS. The more info that is out there for people to get help the better. The site is in the early steps i’ve still got alot of work to do. So come Join and help if you can.

    #83457

    Anonymous

    Hello Akker,

    Have you signed up with the foundation? We send out a patient packet with a lot of info.

    There is also a VERY good GBS/CIDP book, written by two Drs on the foundations medical advisory board. Dr Joel Steinberg, Garth Parry, (title)GBS Diagnosis-recovery-neurology. You can get it on Amazon for $14.95.

    When a Dr or medical staff member asks me a ?, I often refer to this book.

    #83466

    Anonymous

    Thanks Kassandra! I had no idea a book was even out there and will indeed check into getting one for my own reference and understanding!
    Hello Aikler! Pleasure to meet you! I guess none of us understand the reasons why things happen the way they do when it comes to illness! I don’t have GBS but have Lupus and CIDP along with a few other autoimmune problems added to that. I too often ask myself why! And can’t understand! Sounds to me like your child has had a very rough start in life. When I was a child, I went over to a friends house after school to meet the girls mother. They had two doberman pinchers. We went into the house and Tina went upstairs to get her mother while I was sitting in their living room. Then both dogs just came out from nowhere and because they didn’t know me and their master was upstairs I got attacked by both of them. I have a faded scar on one eyelif and a faded scar on my neck, three scars on my chest and one scar on my leg. All are faded alot now and are barely seen but I can see them and still know they are there. That was the most horrible thing I have ever been through in my childhood. I stayed in the hospital 3 days because one broke a bone in my arm and the swelling was bad and they needed to get the swelling down so they could take me to surgery and reset the bone. All together I had 60 stitches to bear with. I was very lucky because they got my neck on the side where the jugular vein was at. And to this day I am petrified of Doberman’s. Pit Bulls and Rottweilers along with German Shepards. In fact any large dog if I don’t know them I am scared of them. My father just to try and get my less scared of them even went out and got us a puppy. And that helped some but I still don’t trust the larger dogs. Both Dobermans that bit me ended up getting shot two weeks later because they tried to attack another person. And then for your child to get GBS right after this is just a horrible nightmare! Your child has been through quite a bit. I believe though that her experiences will end up making her a much stronger person and a fighter! I am glad to hear that she has improved and will pray for her that she gets stronger everyday and gets well soon. Welcome to the site! The GBS Foundation sends out letters and they do many fund raising for our cause! They even have conventions where others meet and get to know each other. This place is the best place to get he word out but your site too will even make more awareness! Good luck to you and your child. I will keep your family in my prayers and hope that things improve each and every day! God Bless!
    Linda H

    #84692

    Anonymous

    akker,

    GBS is a dreadful condition for anyone to experience and especially so for a child or young person. I can only imagine how difficult it must be for a parent. I am probably one of the lucky ones because it did not strike until I was older. I experienced all of the unknowns and uncertainties that you express. I respond to asssure you of a sense of hope. While each case seems to be different I have found that most individuals do recover from much of the damage that is done. It just takes time. Many seem to enjoy what would be considered a full recovery. While there are relapses in the case of GBS the percentage of those who do is small.

    I knew nothing of GBS when it struck almost 2 years ago. I know of no reason why it did, it just did. With me it was rather severe and I experienced all of the typical conditions: sudden onset, ventilator, total paralysis, pain, slow regaining of nerve and muscle function. It was about 6 months before I was able to walk but from then on the progress was noticable over the next several months. I now have regained most of my pre-gbs abilities. I still have problems with numb feet but am walking unaided up to two miles a day. I do not experience any other effects.

    I believe the physical therapy that I had was a tremenous help. I worked hard at it and it seemed to pay off. The GBS/CIDP Foundation is an excellent place to obtain information. If there is a Foundation supported support group in your area they can also be a great help in meeting others who are recovering or helping others to recover.

    Things will get better.

    #95112

    Anonymous

    know of a Dr/neuro dept. @ wayne state univ? I am needing a second opinion. Thanks to any that can help. Margaret Mary

    #95142

    Anonymous

    Margaret Mary,

    There are 2 Drs. that are at Wayne St and that are on the Foundations Medical Advisory board.

    Richard Lewis, MD
    Associate Chair, Neuro

    Robert Lisak, MD
    Chair, Dept of Neuro

    #110193

    The correct reason of gbs syndrome is unknown. But it is frequently preceded by an infectious illness such as a respiratory disease or the stomach flu. There’s no known cure for gbs syndrome, but numerous treatments can easiness symptoms and decrease the period of the illness.

    #113812

    Karen6542
    Participant

    My dad had a hard time of it, his last decade or so of life. First, he lost a kidney to cancer, but we all thought he was so lucky because he didn’t need chemo or radiation after surgery. A few years later, the other kidney failed, why, we don’t know why. He was on dialysis, and was aboout to be put on a list to recieve a new kidney. to do so, he had to get all his vaccinations up to date. A titre showed all he really needed was a flu shot, which he got. Shortly afterwards, he began to experiance weakness and numbness in his legs. His doctor almost immediately suspected GBS, and got him in with neurologists at the University of Buffalo. They very shortly diagnosed him with CIDP. He had a vast improvement-he went from being barely able to walk with a walker, to being able to go up stairs unaided. And then, a relapse. this time, the paralysis and numbness spread to his hands and arms. In the end, he could barely swallow, and died of aspiration pneumonia, a little more than 5 years ago. the neurologists agreed, it very well could have been the flu shot. All the while my dad was going through all this, we wondered, what did he do to anyone, to deserve this? When my dad was younger, he was the first to step up when he saw a barroom bully picking on someone smaller. He was the first to help build your deck, your new garage, fix your car in the driveway, change your flat tire on the coldest day of the year so you could get to work. He was always there, to help anyone, to offer a shoulder, to give advice. He was funny, he had street smarts, he had a definate sense of right and wrong. He loved dogs and kids, and they loved him on first sight. Why do things like GBS or CIDP happen? Who knows. All we can do, is try to find not just cures, but preventions.

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