HEALTH TRIUMPH

Tipping Point

Life with Guillain-Barré means muscle weakness, sudden falls and episodic paralysis. Years after my diagnosis, I'm back on two legs again.

Newsweek Web Exclusive

Jun 5, 2008 | Updated: 3:47 p.m. ET Jun 5, 2008

« Return to Article

Discuss

Posted By: crossb @ 09/19/2008 8:33:05 PM

Comment: I was fascinated by this article. Thank you so much for bringing awareness about this little-known disease. I contracted Guillain-Barre 2 years ago, but my story was much different than yours. The onset of mine was very rapid. It was a week from when I first had tingling and weakness that I had to be put on a ventilator and experienced complete paralysis. I was hospitalized for 2 months, and it wasn't until around 6 months ago that I felt like I had pretty much recovered, and I am grateful daily that I can walk. I do still have some tingling and weakness in my toes, and also occasionally have brief sharp nerve pain in my feet. I know how hard that disease is to deal with, and I wish you much luck in your recovery. Thank you again for writing this article.
Posted By: Anwer Pasha @ 07/29/2008 6:09:00 PM

Comment: In morning when my son wakes up we send him daily to a hospital where a little physiotherapy and standing on tilting table is provided for him.After comming back we try to give him a little water by mouth. After that a bath is given to him and than he sleeps for 3-4 hours,In evening a physiotherapist works with him for more than one hour,than again he is keep dtanding for about 15 minutes.After that he is is busy with family, meanwhile his sister tries to give him some food by mouth.He is braught for a ride on a car for more than one hour with family members daily at about 10 pm. At midnight he is given a soft physiotherapy by family members and standing for about ten minutes.Than he sleeps at night for 6 to 7 hours.On friday he goes to a mosque regularly for prayers on wheel chair.On sundays he goes to a spirtual person.Before march last year he was braught every satureday night to some place out of city by his brother Ubaid Pasha but after his kidnapping and murder it could not resumed.
He is improving very slowly but we are trying our best.
Posted By: Anwer Pasha @ 07/29/2008 6:03:26 PM

Comment: A group of doctors inspeted Jawad Pasha on 19th July 2008 at Shafa International Hospital Islamabad Pakistan and told that he is with a diffuse axonal injury and he is a persistent vegetative state patient , We are thankfull to Newaweek,We are looking for some medical sport from people of Unitwd States
Posted By: nickeh @ 06/25/2008 9:34:32 PM

Comment: Hi there, interesting story. I have Guillain-Barre and i've been having it since the last 4-5 years. My treatment is gamma globulin through an IV and i've had the same treatment since I stepped in to the hospital until now and it's just keep going on like that. Every three weeks I go in to the hospital an get my treatment, get out and come backs three weeks later, same thing in 4-5 years no exceptions. I played hockey when I got the diagnose, i've played my whole life but then it was just stop, I couldn't skate, I couldn't even get up from the ice when I was falling so I had to quit. Sometimes I wondered how my life had been today if i didn't play hockey back then and build my legs up every day, a wheelchair maybe. I have to admit that i haven't been training so much the latest years, I can't see the funny in training when I don't get any better.
Last month my doctor told me that I'm not going to become healthy again, that hits an 18year old boy pretty hard. So i have one question for you David Rompf, if I start training really hard like swimming every day, is there a possibility that I would get better, I don't meen get healthier but strong enough to run for example? An answer from anybody who can answer this question and be a 100% sure is welcome. Just want to get better :) Just so you guys know, this is no "I want you to feel sorry for me"-text. Just wanted to tell my story. Have a great life // Niklas 18years Sweden
- Posted By: dcrompf @ 06/28/2008 4:58:03 PM
  
  Comment: Dear Niklas, Thanks for posting your comment. If you leave your email address here, I will respond to you personally. Staying as active and fit as you can, even with the worst case of Guillain-Barre, is important. Exercise such as swimming--although it may be a struggle at first--will help you feel better and perhaps more energetic. You may also want to try some light weight-training on your legs to maintain the muscle and build up strength. GBS requires time, patience, discipline, and plenty of rest along the way. Thanks again for telling your story. -- David Rompf
  - Posted By: nickeh @ 06/30/2008 7:20:36 PM
    
    Comment: Hi David thanks for answering, my email is nickeh90@hotmail.com . I really need a hand with my training so I appreciate that you taking your time so stay in touch.
    
    Niklas Stenmark
  - Posted By: nickeh @ 06/30/2008 7:16:53 PM
    
    Comment: Thanks for answering David, my email is nickeh90@hotmail.com . I can need some help with my training so stay in touch. Really appreciating that you taking your time.
    
    Niklas Stenmark
Posted By: Goodwin72 @ 06/07/2008 3:07:14 PM

Comment: Very interesting article. I've heard about Guillain-Barre but did not know anything about it. Thank you for explaining it clearly, and eloquently, too!
Posted By: GPerkins @ 06/07/2008 3:01:41 PM

Comment: What a scary story, but beautifully told. Good luck on your continued recovery!
Posted By: GPerkins @ 06/06/2008 8:01:32 PM

Comment: Thank you for this graceful, informative account of a devastanting condition. I came down with Guillain-Barre several years ago and still suffer from residual symptoms. You did a great job of describing what people with GBS go through.
Posted By: Jawad Pasha @ 06/06/2008 6:34:01 PM

Comment: June 06, 2008 at 09:55 PM GMT
Head Injury / Traumatic Brain Injury Pakistani Patient Jawad Pasha 26 Locked in syndrome
Pakistan is now at world highest road accident rate and due to other circumstances Pakistan is facing highest average of Trauma.Very less medical facilities and death toll in head injury is very high,Survivors with brain injury have no place for them anywhere in Pakistan. I am sending you my story, It is a sad story but we need special assistance because we are doing our best and there is success in this hard and normally no cure case, Story of a father of a Pakistani patients Jawad Pasha 26 with traumatic brain injury locked in syndrome am not good at computer and not good in English so i am sorry if you found it weak. I am father of 3 sons and a daughter. One of my son is working with me rest 2 were studying in university.One named Jawad Pasha when he was 23 found injured at one hospital with some unknown accident on 13th September 2004 and since than he is totally disable like locked in syndrome.we are helpless here even you can find no website here on the subject of traumatic brain injury. he was under treatment since than at the 2 top hospitals here and visited almost all famous hospitals here at Pakistan, brought him twice to Singapore SGH but only loss because they have no specialty regarding T B I. my son is fully wise smiles and laughs when listen such talks tries to move a little his hand or foot , identify and remember people and voices working hard since than without guidance. He is with good heath till now. Now after a long time a Pakistani doctor at USA is helping and guiding me, but having other tragedies meanwhile. My youngest son Ubaid Pasha who was 23 was kidnapped for ransom on 5th March2007,the same day on which he completed his computer degree and kidnappers received the ransom but they killed him and his body was found after arrest of the kidnappers and one of killers was the person who supplied medical equipment for my son Jawad. My son was a Hope for me and his elder disable brother ,and me going old now,Meanwhile Land mafia power full here found these events fit to capture my business they torched threatened me and my family and beaten my son working with me, what to do? It is 4th year of whole night awakening with my son.I don't know why god selected me for this all but thanks to god he gave me courage to fight. Anwer Kamal Pasha; Mail to Share me; ,jawadpasha82@gmail.com Address 2-A , Gulzar-e-Qauid ,Airport Road , Rawalpindi . Pakistan Phone+92515956039 Ce;;+923218550951
Posted By: Jawad Pasha @ 06/06/2008 6:33:01 PM

Comment: June 06, 2008 at 09:55 PM GMT
Head Injury / Traumatic Brain Injury Pakistani Patient Jawad Pasha 26 Locked in syndrome
Pakistan is now at world highest road accident rate and due to other circumstances Pakistan is facing highest average of Trauma.Very less medical facilities and death toll in head injury is very high,Survivors with brain injury have no place for them anywhere in Pakistan. I am sending you my story, It is a sad story but we need special assistance because we are doing our best and there is success in this hard and normally no cure case, Story of a father of a Pakistani patients Jawad Pasha 26 with traumatic brain injury locked in syndrome am not good at computer and not good in English so i am sorry if you found it weak. I am father of 3 sons and a daughter. One of my son is working with me rest 2 were studying in university.One named Jawad Pasha when he was 23 found injured at one hospital with some unknown accident on 13th September 2004 and since than he is totally disable like locked in syndrome.we are helpless here even you can find no website here on the subject of traumatic brain injury. he was under treatment since than at the 2 top hospitals here and visited almost all famous hospitals here at Pakistan, brought him twice to Singapore SGH but only loss because they have no specialty regarding T B I. my son is fully wise smiles and laughs when listen such talks tries to move a little his hand or foot , identify and remember people and voices working hard since than without guidance. He is with good heath till now. Now after a long time a Pakistani doctor at USA is helping and guiding me, but having other tragedies meanwhile. My youngest son Ubaid Pasha who was 23 was kidnapped for ransom on 5th March2007,the same day on which he completed his computer degree and kidnappers received the ransom but they killed him and his body was found after arrest of the kidnappers and one of killers was the person who supplied medical equipment for my son Jawad. My son was a Hope for me and his elder disable brother ,and me going old now,Meanwhile Land mafia power full here found these events fit to capture my business they torched threatened me and my family and beaten my son working with me, what to do? It is 4th year of whole night awakening with my son.I don't know why god selected me for this all but thanks to god he gave me courage to fight. Anwer Kamal Pasha; Mail to Share me; ,jawadpasha82@gmail.com Address 2-A , Gulzar-e-Qauid ,Airport Road , Rawalpindi . Pakistan Phone+92515956039 Ce;;+923218550951
Posted By: Jawad Pasha @ 06/06/2008 6:31:46 PM

Comment: June 06, 2008 at 09:55 PM GMT
Head Injury / Traumatic Brain Injury Pakistani Patient Jawad Pasha 26 Locked in syndrome
Pakistan is now at world highest road accident rate and due to other circumstances Pakistan is facing highest average of Trauma.Very less medical facilities and death toll in head injury is very high,Survivors with brain injury have no place for them anywhere in Pakistan. I am sending you my story, It is a sad story but we need special assistance because we are doing our best and there is success in this hard and normally no cure case, Story of a father of a Pakistani patients Jawad Pasha 26 with traumatic brain injury locked in syndrome am not good at computer and not good in English so i am sorry if you found it weak. I am father of 3 sons and a daughter. One of my son is working with me rest 2 were studying in university.One named Jawad Pasha when he was 23 found injured at one hospital with some unknown accident on 13th September 2004 and since than he is totally disable like locked in syndrome.we are helpless here even you can find no website here on the subject of traumatic brain injury. he was under treatment since than at the 2 top hospitals here and visited almost all famous hospitals here at Pakistan, brought him twice to Singapore SGH but only loss because they have no specialty regarding T B I. my son is fully wise smiles and laughs when listen such talks tries to move a little his hand or foot , identify and remember people and voices working hard since than without guidance. He is with good heath till now. Now after a long time a Pakistani doctor at USA is helping and guiding me, but having other tragedies meanwhile. My youngest son Ubaid Pasha who was 23 was kidnapped for ransom on 5th March2007,the same day on which he completed his computer degree and kidnappers received the ransom but they killed him and his body was found after arrest of the kidnappers and one of killers was the person who supplied medical equipment for my son Jawad. My son was a Hope for me and his elder disable brother ,and me going old now,Meanwhile Land mafia power full here found these events fit to capture my business they torched threatened me and my family and beaten my son working with me, what to do? It is 4th year of whole night awakening with my son.I don't know why god selected me for this all but thanks to god he gave me courage to fight. Anwer Kamal Pasha; Mail to Share me; ,jawadpasha82@gmail.com Address 2-A , Gulzar-e-Qauid ,Airport Road , Rawalpindi . Pakistan Phone+92515956039 Ce;;+923218550951
Posted By: UMSPH @ 06/06/2008 12:21:32 PM

Comment: My brother-in-law had Guillain-Barre in 1997 when he was about 30 years old. At first, my family did not know what it was. At the time, my brother-in-law was very athletic and played a lot of sports, especially basketball. A week leading to his fall on the commuter train, he felt muscle weakness and numbness but he thought they were just symptoms of a cold. He was not able to walk and lost most of his strength in the hands and arms in the following days.

For his treatments, he was on plasmapheresis and gamma globulin through an IV for a short period of time at the beginning. After that the doctor told him that he just needed to take Vitamin B complex and let his body to recovery by itself; and when he gained back enough muscle strength then he could start physical therapy. My family was very worry that he will be paralyzed so we convinced him to start acupunctural treatments together with some herbal medicines. Together with physical therapy, it took him almost two years to recover and to be able to go back to work. He told me that he could never fully recover his muscle strength.

Until now, I don???t know if there were any health benefits of the acupunctural and herbal medicines treatments for my brother-in-law???s recovery since there is no research out there that I am aware off.

Thank you for sharing your experience and raising public health awareness!
Posted By: fabchab @ 06/06/2008 7:56:15 AM

Comment: Thank you for the article. I had Guillain-Barre in college, eight years ago. I was fortunate that plasmapheresis did the trick and I was out of the hospital in only ten days, but I still seem to have very poor circulation and a slight decline in coordination. I've never met anyone else who had it, and most people haven't heard of it. Thank you for sharing your experience.
STC, Portland, Maine
Posted By: SLR1995 @ 06/06/2008 7:39:31 AM

Comment: I too had Guillain- Barre in Sept. 1999. I was on a respirator for 1 month,had 2 seizures. I did end up with pneumonia, eye infection, blood infection and mrsa along with a few other things. I had 5 plasmapheresis treatments.I went to a live in therapy hospital for one month. Then out patient physical therapy for 6 months.
I do have a DVT(blood clot in the main vein) in my right leg. However as my doctors tell me I'm lucky to be alive. Because I had one of the worst cases they have ever seen,(it went right up to the back of my head)I am less likely for a reoccurrence.
S.R.- Rhode Island
Posted By: lsmith1950 @ 06/05/2008 9:44:05 PM

Comment: My wife had Guillain-Barre in December 2001. Her arms and legs went numb. There are two treatments that can help lessen the effects/shorten the duration of it - plasmapheresis and gamma globulin through an IV - She had the latter. She was in the hospital for almost three weeks, in a wheelchair for more than a month after that - made little progress through January 2002. Finally in February, after more than a month of intensive therapy, she began to be able to walk some with a walker. She had therapy three times a week through Apri., I believe it was. Even now, she has some effects from it. Fortunately, her case didn't actually damage the nerves - just the covering to the nerves which mostly regenerated. 4% of those who have it die because it gets to their lungs - they develope pneumonia - and don't survive. Thank God that was not the case for her - However, she now is more likely than the general population to have a reoccurence.
Posted By: rfk1967 @ 06/05/2008 9:30:37 PM

Comment: I had heard of Guillain-Barre, but never really knew what it was. Thank you for educating me in others in such a moving, vivid way. I hope and pray that your recovery continues and is complete.