Tipping Point

My father had it so severe that he was in the ICU at the Cleveland Clinic for over 1 month; months of rehab follwed afterward to learn how to walk, write, etc. His fine motor skills are limited - shaky handwriting, unable to run or balance, walking is very "stiff." He had it over 15 years ago, and I am glad that he is around today. His motor abilities are not like they used to be in his "normal" state, but he is mobile and enjoying life.

2nd time about 20 years later, I do want to scare folks but I have experienced the on-set of Guillain-Barre twice. The first time was minor with effects in the legs, arms, and shoulders. The second time I became completly paralized except for my internal organs. It took a lot of relearning, including walking and using my arms, hands and fingers. I do hope they find a way to prevent this, but in my case it came on very fast, within one day.

my daughter contracted Guillain-Barre a month ago. I am happy to say she will be home tomorrow using a walker. This was the scariest moment in my life not knowing what was going on with my 15 year old. it happen within a weeks time. Her doctor said it was a virius just let it run it course. I am glad i was not happy with that and went to the emergency room. I am thankful the ER doctor knew after the examination and wasted no time because it started to affect her breathing. She was in ICU for days and after her second treatment she started a rapid recovery and it hasn't slowed down.

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.

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.

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

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!

What a scary story, but beautifully told. Good luck on your continued recovery!

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.

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

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

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

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!

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

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

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.

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.