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November 2007

I was diagnosed with GBS (Guillain-Barre Syndrome) in Feburary. I went to the ER five times until they found out what was wrong. I spent four weeks in the hospital, and then 30 days in a nursing home. At the same time I was also a student at the local college, and June 13th I received my college degree. I had to use the walker for the processional, then a wheelchair to get on the stage. After that I walked (not to well); however I got my college degree with dignity and honor.

This is Kathy's success story.


December 2007

I was diagnosed with GBS (Guillain-Barre Syndrome) in 1981. At the age of 9 years. I have dropfeet and still some other weakness in both my legs. But the good news is I am a cyclist. I make use of braces when I walk or cycle. I was in Athens in 2004 and I was in France this year for the world champs.Hopefully I will see you in Beijing next year. So, the bottom line is, you can overcome GBS!! Good luck with your recovery.

This is Susan van Staden Pox's success story.


January 2008

After 4 ER visits I was diagnosed with GBS. I was about to celebrate my 40th Birthday with a new baby at home. I was an Airline Pilot with the best airline and my life was so on track. Once diagnosed, I was admitted into ICU very close to life-support for about 2 weeks. I spent 3 additional months in the hospital and walked around 5 months. Almost a year later, I returned to work as an airline pilot as good as new. If you ever see me piloting your BIRD so to speak, let me know, we have something in common. Terry, Southwest Airlines

This is Terry's success story.


February 2008

I've never had more than the sniffles until November 2007. Within weeks, I went from walking, jogging, and living a healthy life to helpless in ICU as a result of GBS. Initially, I experienced tingling in my toes and fingers that spread upwards within a week. Then I began wobbling uncontrollably, and lost the ability to climb the stairs to my bedroom. By the end of the first week, I became weak, unable to write, or walk without difficulty.I had tingling and numbness in both hands and feet.

After describing my symptoms, I was diagnosed with GBS. I spent 1 week in ICU for administration of IVIG. I was devastated not being able to walk, barely talk, and my independence quickly vanished. I am a fighter, so I was determined to regain control and be self sufficent again. It's been six weeks, and I am walking again with a cane! I am still weak on one side, and experience pain and tingling, but I am self sufficient, and am able to use a computer which is very important being an IT professional. After receiving GBS/CIDP information I have gained a better understanding of GBS. Thank you, for the wealth of information! It made a big difference in my life, and it helps me to know there is a branch in Chicago. I haven't recovered 100%, but I do have hope, and that's all that matters!

This is Ernestine's success story.


March 2008

Two and a half months after giving birth to her first child, our daughter Brie, prepared to return to work as a first grade teacher. Brie went to school for two days before being rushed to the hospital ER, and placed in the ICU unit after being diagnosed with GBS and essentially totally paralyzed from head to toe. All of this took place in October 2007, where she "celebrated" her 28th birthday without her little daughter, Kiera. While our whole extended family was a quivering, freaked-out, distraught mess, Brie remained a tower of strength and power that was amazing to all of us.

After leaving the ICU unit and spending a month in the rehabilitation hospital, Brie showed determination and grit while undergoing the hard work to learn to walk and hold Kiera again. The exceptional care at the hospital, including correctly diagnosing and administering treatment within the first couple of hours after entering the emergency room was truly a huge factor in her speedy recovery (after an equally speedy decline).

Now as Brie tells it: "It was the knowledge that was obtained through the many people involved with the GBS/CIDP Foundation that convinced her that her condition will be temporary, and better days were ahead and the extreme desire to be back at home with her "new" family (husband Brad and Kiera)."

Brie intends to go back to her first grade class on a part-time basis shortly, and we cannot express our appreciation to the Foundation for all the support that has been and continues to be provided.

This is Brie's success story.


April 2008

My story starts 34 years ago when I was 4 years old. My parents went to bed for the evening and I awoke to the blazing sound of Johnny Carson. Unable to move I some how mustered the strength to call out to my parents. When they reached me I was completely paralyzed, and they rushed me to the hospital. While there I went through the worst time in my life, I went into cardiac arrest 3 times, my eyes crossed, and I had a feeding tube. After 3 months in intensive care I went home unable to walk or crawl. After many months of therapy I regained my mobility. At the age of 10 I had surgery on my feet to put in bone blocks in to keep them from rolling inward. Now that I am about to embark on my 40th birthday I am a living testimony that there is life after GBS. As a result of GBS I was left with drop-foot which does cause lots of pain and discomfort but my life has been as normal as expected.

This is Shelly's success story.


May 2008

My first encounter with a relatively unknown illness, Guillain-Barre Syndrome (GBS), occurred in 1962 at the age of 26. The chilling part is that I experienced the very same trauma again in 2002 at the age of 66. There is no known cause and very little treatment for GBS. And while it is very rare to have this illness once, it is even rarer to experience it twice. Each individual's experience is different relative to onset and severity. For me, within 36 hours it meant complete paralysis, breathing through a tracheotomy, unable to speak or swallow and being fed through a feeding tube. Both times I spent many days in the ICU and many hours being rehabilitated. This is a harrowing time in one's life and you are left to wonder more than once, "Why me??"

The first time I was very busy with 3 small children, with 2 more to arrive later, so it was pretty much life as usual upon recovering. But this last time, 40 years later, there was a new wrinkle. My family found the GBS Foundation headquartered in Pennsylvania and found a great deal of support and information from that source. Now, six years down the road from that second episode, I think I have found out "Why me??" Four years ago I became the chapter liaison to the Foundation for the East and South Bay areas of California. My "job" is to respond to newly diagnosed patients in hospitals within this area, hopefully providing encouragement, as well as information and support to them and their families. I am told by my patients and their families that there is no substitute for talking to someone who has "been there, done that". And, when I am there with them, I absolutely "know" I am in the right place.

This is Beverly's success story.


June 2008

I had GBS in 2000. It paralyzed me completely. I spent 8 months in the hospital. I have excersied continually since. I only have very limited movement and cannot walk. I use a power-chair. However this past week I have regained usage of my left hand and arm. I can write now, (I had to print), and my strenght is coming back in the arm. I thought maybe this would help someone else to know that some times the feeling and usage can come back. It has been Eight years since I have closed my hand, made a fist or could write. I was 72 years old when I was stricken and I am 80 now.

This is Billie's success story.


July 2008

I am a 64 year old Catholic Priest. In December 2, 2006, I woke up with numbness on my fingertips. Not realizing or even bothering about what it was, I continued with my pastoral duties as usual. The following day, after a long busy Sunday schedule of Masses and other church activities, I took a short afternoon nap and when I woke up, the numbness had spread to my palms and soles. My primary doctor initially thought it was just an allergic reaction to a new medication that I was prescribed. But after three days he realized it was something else and referred me to Neurologist.

After a series of tests, I was hospitalized since I could no longer walk and had totally lost my sense of touch. My neurologist treated me with "immunoglobulin" intravenouisly for five days, after which I began to recover some movement with legs. My recovery has been long and difficult. As a priest when I said Mass I needed a high chair to seat on while I am at the altar, and another priest to hold up the Sacred Host and Chalice during consecration. (For quite a while I couldn't even hold a fork with my hands.) I had to ultimately seek disability retirement from my pastoral duties after one year because I had suffered 10% permanent nerve damage.

Now, after one year and a half, I am able to walk easily with a cane; I can say mass by myself again - although I still need one altar server to lean on in distributing Holy Communion. I can drive by myself again and have fully adjusted to my life with disability. I still have a slight numbness on my palms and soles, but looking back to what I was in December 2006, I am very grateful to Almighty God for giving this recovery and a continued opportunity to be able to minister to others.

This is Father Arejola's success story.


August 2008

I came down with Guillain-Barre one year ago this month. Maybe I was lucky. They caught it within five days. Still in that time I went from being able to run a sub-6:00 minute mile to barely being able to walk. I was hospitalized and used a cane for months afterward. However in this one year I have regained my ability to bike, run, cross-country ski and swim. In June I was able to hike to the bottom of the Grand Canyon and back. I am 47. I still can’t run as fast as I did, but I feel my speed is returning slowly. I plan to enter a running race this summer and try Telemark skiing next winter.

This is Peter's success story.


September 2008

Three short years ago, on Memorial Day weekend, I, too, was sticken with GBS. One day I bent over to pick something up and fell over, thinking I lost my balance. This was a Wednesday. By Sunday, I was totally paralized, in a coma-like state and got worse from there, if you can imagine. I spent three weeks in intensive care and a total of three and a half months in the hospital. I completely recovered within that 3.5 months, thank the good Lord. I know many people do not. Keep a positive attitude, and, of course, prayer was a big part of my recovery. I was 86 then. I will be 90 in December.

This is Lucy's success story.


October 2008

I contracted GBS on 11th February 2005 when 47 years old. I stopped breathing 36 hours after entering the hospital and then spent 8 weeks on a ventilator - completely paralyzed, except for movement of my head. Three things kept me sane and drove my recovery: 1. I told myself that I would never let GBS get me down. 2. I made the clock in my hospital room my friend and not my enemy (every minute gone is a minute closer to recovery). 3. I set myself a target - it was to walk out of hospital unaided - and I used that to help me battle through the daily pain and struggle. After 16 weeks of treatment, I did it! Sports were and are my great passion. I was an active marathon runner and tri-athlete before I was ill and desperately wanted to start again. I started with short walks, and then progressed to walking with trekking poles. I could stumble and jog 50metres after 14months of recovery, this went up to 2km after 18 months and I am now able to run 15km, as well as cycle 60km and swim 1500m. I am not as strong and still have limited movement in my feet and toes, as well as some paralysis in my face. But hey, I am alive! GBS taught me that mental strength is the key. Focus on what you can do and not what you used to be able to do. Finally, set yourself a target. Yes, there will be ups and downs, but that target will move you on and push you harder than you thought possible. You can do it!

This is Martin's success story.


November 2008

I had just had a spinal fusion on my back done. The day I came home from the hospital, my 5 year old daughter, Makyra, came down with strep throat. My husband took her to the urgent care where they put her on antibiotics. A few days later while I was at home recovering from my surgery Makyra started complaining that her legs hurt. I brushed it off and told her that she would be ok and that she was probably just tired. She got increasingly fussier and the next day she came home from summer school and my son DeAron(7 at the time)said she had fallen off of the bus steps. I was a little concerned so I had my husband take her back up to the children's hospital and they diagnosed her with joint inflammation due to strep. They told us to give her Ibuprofen and it should subside. Well, by the end of the next day she was screaming constantly and stuck paralyzed in a fetal position. I called my Mom (my husband was at work) to come get her and take her back to the hospital. She did and the next phone call I got (I could not hardly walk let alone drive) was that they were taking her by ambulance to the downtown children's hospital and it was not good. They were concerned about her breathing. My mom followed the ambulance and later came and got me and took me to the hospital to stay with her. Ten days later in the hospital they decided it was Guillain-Barre Syndrome. The rehab was a lot of work as we were rehabbing together but we got through it. She had a lot of friends and family members praying for her and myself. She recovered amazingly fast through intense therapy. She came home having to relearn to walk, use the bathroom, use her hands, write, eat, and all of the normal things we take for granted every day but she did it and amazingly well! I am so proud of her. She is a real trooper!

This is Candice's success story.


February 2009

I was diagnosed with GBS in October 2008. I am 26. I was admitted to the hospital six days after my symptoms began and was treated with plasmapheresis. Within two weeks I was completely paralyzed from neck down, intabated, and then given a trech. Amazingly, I was off the trech and transferred to rehab in three weeks! On the first day of rehab I couldn't sit up on my own. My progress seemed slow at first and I struggled with myself to push through the pain. Then one day it was like I had an inner strength i never knew I had. I would do an exercise for 10 minutes one day and would double the time the next day. It became a game to me, it was fun to see my family and therapists reactions!! This continued for the next three weeks until one day, when I was doing a standing exercise in the parallel bars and decided I would rather try to walk. I walked 20 feet! Everyone was crying because all of our hard work was paying off! I am home and going to outpatient therapy 3 days a week. I continue with support of my family, amazing therapists and doctors to push myself everyday so that hopefully soon I will be able to walk without a walker, drive my car, return to work, and be "normal" again! Living with GBS has been one of the toughest experiences of my life but I am very lucky to have met so many caring and supportive people that are now lifelong friends!

This is Jennifer's success story

March 2009

I contracted Guillian Barre Syndrome on July 4th 2008. I woke up that day feeling weak and confused. By the next morning I could not walk down my stairs and later that day ended up in the hospital paralyzed. The doctors told me I had GBS and that I may end up on a respirator. After seeing my three children leave the hospital that day I promised myself I would focus and use all of my mental ability to control my breathing and exude positivity with every breath I took. Well, I ended up not needing the respirator and got out of the hospital two weeks before the doctors initially said I would. Although I left the hospital with a walker and could not step on my own, I promised myself I would walk sooner than I would and would stay ahead of every timeline doctors game me. Well after enduring the most painful three months of my life, I’m ahead of schedule. And today I can not only walk full speed, but I can pass a soccer ball and have baseball catch with my son. I am living proof that if you stay positive and focus all of your energy and determination, that pure will can prevail. I look forward to a full recovery and plan on proving every doctor that tells me I can’t do something wrong. To everyone in need, stay positive, be strong and show the world what you are made of. Good luck to all.

This is Ted's success story.

April 2009

My son Tucker was diagnosed with GBS at 17 months old. He was in the ICU within 5 days of symptoms and lost all mobility except moving his fingers. Now, 10 months later, he is running, jumping, and playing like a regular 2 year old. He still lacks any reflexes and will need to get some hearing tests done, but otherwise he is flourishing. During the Charlotte, NC walk-a-thon I brought his stroller for his miracle mile but he refused to use it. We left it on the side and he walked his whole mile only stopping to play with bugs! Tucker is not only my little miracle but he is an inspiration to everyone who meets him.

This is Jessica Beatty's success story

May 2009

In January 1992 I was hospitalized with Guillain-Barre Syndrome and within days of hospitalization was totally paralyzed, unable to move any part of my body and couldn’t even lift my head off the pillow. I could only blink my eyes. I had been an all-state track and cross country runner, as well as excelling in other sports. I underwent several weeks of hospitalization, 13 plasmaphoresis treatments, months of rehab, etc. In September 1993, I competed in the Queen City Expo bodybuilding competition and placed 4th! Over the years since, I have competed in half-iron man triathlons, long-distance duathlons , ultra distance cycling, etc. and placed in the top 3 in each and every race. For those currently dealing with GBS, please hang in there and never give up.

This is Kim's success story
June 2009
Never take anything for granted, not even walking! My story starts in September 2006. I had just had my first son and two weeks later, I was having excoriating headaches with lower back pain. I was on maternity leave from the AF, spending time with my newborn but all I could do was concentrate on the incredible pain I was having. Not long after the pain, the weakness started. I couldn’t even carry my baby up the stairs. Each step felt harder every day, trying to stand up from the couch while holding him was a challenge. I went to the doctor and no one could figure out what was wrong except on wonderful doctor who suggested GBS. Now I was overseas at the time so no support from family besides my husband and not even a month old baby. I was put in the Italian hospital for two week with numerous tests and constantly in pain that had me in tears all day and night. No pain meds! Every day, I was getting weaker, from only having to hold on to handrails to having to have someone walk me to a walker. They treated and released me. Only two days later, I was back in pain and getting sick so I went to my doc on base which they sent me to Germany. The care there was wonderful. I was there another two weeks but my new established family was not. But I was kept on morphine which greatly helped the pain and doing physical therapy. So for the first 8 months of my child’s life, I could do nothing but lay with him in bed especially since that’s where I was all the time. So now, I am fully recovered still in the military and doing everything I could do before.

This is Jammie Catoe's success story
July 2009
On December 7, 2005 I was diagnosed with GBS. I was quickly diagnosed by my primary care physician even though he had only seen of it before mine. That same night I was admitted to ICU where I remained for two days being placed in the care of a Neurologist considered the best in knowledge of GBS in my area. I was started on a treatment of seven doses of IVIG but continued to get worse. I lost the ability to walk and stand. I was put on a ventilator where I remained for two months. At my worse I could open and close my eyes and move my left wrist. My family put Christmas bells on my wrist so that I could call a nurse if needed. My spinal tap indicated that I had close to four times more protein in my CSF than most of the cases my doctor had seen. To make matters worse, I developed a stage four bed sore. As of January, 2009 I am a little over three years into my recovery. I have never regained total feeling in my feet but other than that God has allowed me to make the most outstanding recovery. Physical therapy was the hardest thing that I had even gone through. Now I am able to walk, continue to train in Tae Kwon Do, drive, work and do just about everything that I could do before I had GBS. God bless all of you who have gone or are going through GBS. Maybe sometime in our life time we will see a cure. I hope that my story can help someone in some way.

This is Michael D. Roach's success story
August 2009
Life was pretty normal until I was diagnosed with GBS in January or 2005. I fell walking in our house and couldn’t get up as I was too weak. My doctor was out of town but the doctor on call diagnosed me with GBS. He told me that I needed to get to ICU as I would need the help of a respirator. Within 48 hours I was on a respirator. I soon was placed on a ventilator for 3 months, as well as having a feeding tube and central line. I received two bags of IVIG to help slow it down. It went from the bottom of my feet to the top of my head, totally paralyzing me for 5 months. I spent 7 weeks in rehab, and 7 months out-patient therapy. The therapy was grueling but it paid off as I am walking, driving, and doing most everything that I used to do. This is with the help of a walking stick as I have drop foot in both feet which hurt each day with electrical shocks going through my toes and feet. I get tired easily but continue to praise God for His healing in my body as I am a walking miracle. As a Pastor I cannot tell you why some with GBS are walking and others like my friend who had GBS in September of 2004 are not, but my trust continues to remain in God. I would encourage those of you with GBS to keep a positive attitude and work hard in therapy. It pays off!! God Bless.

This is Ron Sullivan's success story
September 2009
I was diagnosed with GBS on July 24, 1984. I was 21 years old, active and about to start grad school. Within 48 hours, I was intubated, and on a respirator within 72 hours. I had total paralysis and went through two \"code blue\" episodes when my heart rate dropped to almost a flat line during my 3 1/2 months in the hospital. I was certain I would never live through this, much less recover. I'd like for current patients and their families to know that I was working by Christmas of 1984, regained my pre-GBS weight (had gone from 180 lbs. to 130 lbs.) by March of 1985, and am currently a happy, healthy 46 year old with 3 beautiful healthy children. Post GBS, I have participated in charity running events, played basketball in adult leagues, and enjoy a very active life again. There is a brighter day ahead no matter what it may seem like now.

This is Scott Tarter's success story
October 2009
In 1982, I was a healthy 23 year old competitive figure skater just in the beginning of a professional career. One morning, on the way to the rink, I felt weak and sore all over my body. Thinking I would feel better in the cold, I continued to the rink. By the time I got there (20 minutes away) I had the most painful tingling in my legs and my heart was pounding. Within 15 minutes the stabbing pain traveled up my arms, back and entire upper body. By the time an ambulance arrived, I was limp on the floor, screaming, in more pain than I could even describe. When I arrived at the hospital the entire right side of my face was paralyzed and I had no control over my eyes or mouth. No amount of pain killers or morphine could begin to relieve this kind of pain. Two days later, I was on a respirator and all my organs were starting to show signs of distress. The doctors were baffled. During the next two weeks I had 3 spinal taps, numerous MRI's and more blood tests than I could imagine. I don't remember much after the first 2 weeks. I do remember a tube being taken out of my throat and being told a diagnosis. I was in the hospital for 2 months when the excruciating pain started to come back. Strangely enough, it came back in the same order, my legs first, then my back and upper body then my arms. I was told that my nerves are regenerating and it would get better. I was back home in 2 1/2 months, 45 pounds lighter and so weak that I had to be in a wheel chair. I refused to let Guillain-Barr� get the best of me. I remember standing in my ice skates, holding on to the barrier for dear life, walking like a baby across the rink. I became obsessed with my recovery and pushed myself day and night. 5 months after my diagnosis, I was back to teaching ice skating. Now almost 30 years later, I still have twitching on the right side of my face and right side gets weak when I do to much with it. I believe that being a figure skater, my body was strong enough to fight this horrible disease. But I have to thank the doctors who would not give up on me. I am so glad to read that thanks to all the research, GBS is more easily diagnosed even though it is quite rare.

This is Amy Forman's success story
November 2009
On June 6, 2009 (Saturday) I was diagnosed with GBS. I had been feeling unusual for the prior week or so, with some tingling, numbness and loss of balance, but the 24 hours before I went to the emergency room was absolutely awful. I was paralyzed from the hips down, my arms would not work correctly, and I was having difficulty breathing. My face was even numb! I had felt so sick on Friday(the last day of school) like I had been electrocuted, however, my 2 young boys were moving up in grades (4th and 5th), and graduation, awards and class parties kept me from the neurologist that day. As a teacher, I had so many obligations! Being up all night in pain and an extreme loss of functions/mobility, I had my boyfriend drive me to the ER. The doctor did a lumbar puncture, an EMG and immediately established the GBS diagnosis. I was put on the IVIG treatment immediately with consult from a neurologist, which caused meningitis symptoms - so I felt even worse. However, treatment was in motion and the alternative of plasma exchange did not sound appealing. After another 4 treatments of the IVIG, the doctors discussed going to rehabilitation to learn to walk, OT, and basic daily functions - but I wanted to go home. My family was so supportive, my church was holding me in their prayers, and my little children saw their mom in a new light. I firmly believed with my heart and soul I would walk out of that hospital. After a week, I stood up (with my walker!) and was discharged home. Three weeks of daily PT and lots of exercises to do on my own, I was on my way to recovering to normal functions. I was given Lyrica as a script, which I will have to take daily for a while, and I notice an increase in symptoms if I miss a dose. Tingling in my finger tips, and a heavy numb sensation in my feet still linger no matter what I do, but that too will come to pass. It has been almost 3 months, and I keep up with walking, exercise, and stay on my healthy diet - so I know that I will recover 100%. I was one of the lucky ones, and know that many, many others suffer deeply with GBS for long periods of time. I think my good physical health, and the quick treatment of the IVIG and great medical care all contributed to my recovery. My faith in the Lord and firm belief that I WOULD BE OKAY was the strength I needed to get through this. Anyone who reads this, please know that GBS is not forever, and your body will be okay again. Sometimes even better than before, because of the new awareness of the need for physical strength and internal health.

This is Katherine Power's success story
December 2009

On January 14th, 2008 I was diagnosed with Guillain-Barre syndrome. I had a severe case of polyradiculoneuropathy. It all started with me feeling like crap, I went to the doctor to see what was wrong with me and they told i just had a virus and to come back the following Monday to see how I was doing. I didn't quite make it all the way til Monday. I was going downhill extremely fast, I felt weaker and weaker by the minute. The pain I went through was unbearable, it was like nothing I had ever felt before. The most accurate way to describe the pain is like someone is peeling all your skin off layer by layer and then running over you with and eighteen wheeler again and again. The night I got to the emergency room my status was declining rapidly. If they did not diagnose the problem any sooner I would have died because I could no longer breath on my own. I went to Wayne Memorial Hospitals emergency room to begin with, and by the next morning I was flown to dukes intensive care unit. I spent 5 weeks there in PICU, for 2-3 weeks out of that stay I was completely unconscious and had the most wild, intense, crazy visions you can possibly imagine. The things that went on in my mind while I was unconscious were indescribable. After I became conscious, it was a struggle to rebuild everything that I lost. I had to learn how to talk, breathe, swallow, etc. After my 5 week stay, I was sent to Pitt Memorial Hospital in Greenville where i spent 16 long agonizing weeks recovering from this disease. It was by far the hardest thing I have ever had to go through in my life. It changed my entire outlook on life, I am a different person than I used to be. The doctors told my parents that I was most likely going to have to go home on a ventilator and that I would be unable to stand alone after 6 months. On May 3, 2008 I walked out of Pitt with the aid of a cane. It has been almost 2 years later and if you looked at me you would have no idea that anything has ever happened to me. I have people ask my about my traech scar and I tell them that I was paralyzed and they are just confused because it doesn't look like I have been through anything like that. I am blessed, and extremely thankful to be here on this earth. Every day I thank God for allowing me to stay here, and I never take the small things for granted in the world that go unlooked all the time. It was hard having a positive outlook on things while I was sick but I managed to pull through and make it. I had to dig deep and really fight for my recovery. Guillain-Barre is a horrible thing to go through but it is very possible to make a full recovery. I am proof, miracles do happen.

This is Harris Brogden's success story



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