Guillain-Barré Syndrome
My Journey

 

GBS, PDN and CIDP - just a string of meaningless letters to me until my illness made it clear that they represented a serious and debilitating neurological illness which can suddenly afflict anyone of any age. Guillain-Barré Syndrome is not a virus (as some people think) and is neither hereditary nor contagious.  Hopefully sharing my Journey will help people with Guillain-Barré believe that they need not be a victim of GBS, but rather that they can be a victor;  that they can be "enabled" by their GBS rather than "disabled", the choice is up to you - Transform Tragedy Into Triumph !!

This is a short story about me, a Guillain-Barré Syndrome survivor living in Melbourne, Australia.  Although some parts of my story may sound gruesome, I need to share my feelings.  I especially want my son to understand what happened to his Dad, I want him to know why his Dad wasn’t home that Christmas.  I am not looking for pity, just to provide an understanding of what this syndrome does to people, and what it has done to my life and my family.  I share some of my personal feelings in this story, which is difficult for me, but necessary enable you to understand the full affect of what I went through.  My suffering has gone way past the physical pain I endured.

From Healthy to Helpless

On Fri, Dec 22nd 2000, GBS changed my life.  That morning I woke up with double-vision and knew that something was terribly wrong.  Trying to stand I found myself in real difficulty and found myself bouncing of the walls as I attempted to walk along the hallway. I had just recovered from what I would describe as an 'average' cold but little did I realise that within the next few days my whole life would be changed forever!!!

I decided to firstly visit my Chiropractor, a dear fiend and a gifted healer and after a number of tests he referred me to hospital to get an MRI.  By the afternoon I was very weak, the paralysis was spreading up my body, I couldn't grip with my hands and my legs felt tingly and strange. 

I was then taken to Monash Medical Centre and admitted in Emergency/Casualty, where I remained for 10 hours on a bed in their trauma ward.  I remember it was raining heavily that night and lots of road accident victims worked their up in front of me in the "neurology queue".  Numerous tests were performed on me by emergency doctors in the meantime until my Neurologist finally came in later that night.  I was put on a Heparin (anti coagulant) drip as a precaution incase I had suffered a stroke and was told I would remain there overnight.  To my surprise, I was told that the staff that operate the hospitals MRI and CT Scan equipment don't work weekends, "What, don't people have accidents on weekends" was my angry reply.  Fortunately (or unfortunately) a road accident victim was rushed in which "forced" the hospital to recall it's Imaging staff.  I underwent an MRI, MR angiogram and a CT Scan, which showed a left sphenoid and bilateral maxillary sinusitis and an ENT (Ear Nose Throat) Specialist's opinion was sought.  At that stage I began to deteriorate further and developed increasing left perorbital headache and increasing ataxia.  My ENT specialist made a diagnosis that I was suffering severe  sinusitis from my cold and prescribed for me a 7-day course consisting of Prednisolone, Drixine, Rhinocort and saline nebulisers three times per day. 

There is no way that we can see the cause of the pain experienced with GBS, but we can certainly 'feel' whether it is getting better or worse. On Monday (day 4) the numbness had reached my knees and my fingers had begun to tingle, I was concerned by the rapid spread of the symptoms.  When asked to stand still with my eyes closed I had no stability and my whole body shook.  Over the next 24 hrs, I declined neurologically, my ataxia worsened and I developed "intentional tremor" on my left side, at this time my tendon reflexes had disappeared (knee, elbow and ankle).  I could hardly grip a toothbrush to clean my teeth as I had no fine-motor skills to even perform the smallest of tasks.   On the fifth day after a spinal tap, I was finally diagnosed with the Miller-Fisher variant of GBS, resulting is paralysis of the nerves of the arms, legs, lungs and neck, as well as those controlling the eyes, throat and heart.  I received a full course of Intragam 23 grams/day for five days.  A large intravenous drip was placed up my left arm, and about a litre of it was pumped up my arm, each treatment taking about an hour.  The consistency of Intragam is like thick, ice-cold honey which produces the feeling like someone forcing a cold, steel blade into my wrist, up my arm and into my shoulder as they pumped this into me.  During the first of the Intragam transfusions, my blood pressure was very unstable and I felt very ill during and immediately after the transfusion, slipping into 3 hours of sleep following each session.  After two or three days I began to feel a slight improvement.  When you are first aware of your condition you are too ill to comprehend the full impact.  But as time goes on, you begin to realise your situation, it is then that your attitude is so important.

Only you can hold yourself back, only you can stand in your own way...
Only you can help yourself. 

That night, all of a sudden I started shivering and feeling terribly breathless and that I could not breathe of my own.  I know they took me to intensive care thinking the paralysis had travelled upwards and was affecting my breathing.  But after half an hour I returned to normal and told the doctors that I can breathe of my own (I could have worked that one out!).  I did not see the "white light,” the escalator leading up to the clouds, nor did I have an out of body experience, but I do remember dying that night.

I spent a number of weeks in the hospital just "hanging out".  Most of my memories during my "medically induced" coma due to the cocktail of "top shelf" pharmaceuticals that I was on, are mostly images.  The daily physical, physiological, and emotional stress that I endured everyday on my road back to recovery was almost overbearing, but I still thought in a week, perhaps two, my legs would start to move.  Perhaps, tomorrow I would stand up and then a few days later I would walk out of this hospital.  I tried just about everything to figure out why this had happened to me - all to finally reach the conclusion that the answers I needed were all inside of me!  Failure isn't in falling down, it's failing to get back up and I truly believe every patient carries her or his own doctor inside.  During this whole ordeal, I had always believed that the power within me far exceeded the fear that was in front of me.  I did not think about how long it would take me to get better, I knew I would get better.  You can't change the past, but you can ruin the present by worrying over the future.  All I had was "now" and that's a gift, that's why they call it "the present".  There was so many smaller goals to aim for, moving limbs, standing on my own, brushing teeth etc, I look back over these goals and realise that achieving these one-by-one gave me a positive feeling.  Goals are an incentive towards recovery not matter how small the may be.

Even the longest journey starts with one single step

When I was released from hospital, my first son was just learning how to walk, a lot better than I could at that stage.  I could fully understand how he struggled with each step, tire easily but a miraculous feat to perform, all the same.  I'm not sure who had the most falls during that time, me or him.  He taught me so much even though, unlike myself, he had no experience of walking before.

I was admitted as an out-patient to Hampton Rehabilitation Hospital for six months of intense rehabilitation including hydrotherapy, physiotherapy, occupational therapy, balance skills etc etc.  I was asked to sign my name when admitted, the problem was that I could barely hold a pen and the resulting signature was, like a doctors, unreadable.  I treated the program as training for the Olympics, my gold medal was to walk properly again.  I would finish my rehab sessions and go over to the beach and practice balancing on rocks and walking on the sand (which is quite difficult with GBS due to irregular feedback from the nervous system).  Every day, I went that extra mile.  At rehab, I met some of the most amazing carer's and even more amazing patients.   Thank you to the staff there, especially Daniel, Maria, Merick, Meagan, Nicole and David.  The patients I met there really put some perspective on my life, everyday people overcoming monumental difficulties, so many young stroke victims, teenagers with heart attacks and road accident victims, all of which I shared time with.  I also visited an ophthalmologist (doctors that  specialties is eye/orbital dysfunctions,  opthalmapalegia and diplopia) to assess my sight problems.  They tracked deviations, horizontal and vertical along with a comprehensive eye exam.  My bilateral 6th cranial nerve had apparently becomes traumatized  (demylenated with possible axonal damage), resulting in my eye muscles not receiving proper alignment  messages from the brain hence my double vision. Their experience indicated typically a 3-6 months avg. recovery  time for this nerve, with exceptions either way. I was also diagnosed with left, 4th nerve palsy.  Strangely enough the double-vision resolved itself almost as quickly as it came, some 3 months later.  I awoke one morning to find my eyesight was back to 90% of it's original function, with diplopia on the peripheries.  Over the next 6 months, I regained my reflexes, balance, stamina and basically my life. 

When it gets dark enough you can see the stars

Today’s modern medicine still has a lot to learn. Guillain-Barré Syndrome was always thought to be very rare, but is becoming increasingly common nowadays.  The common medical doctors, nurses, and other medical professionals are not educated enough to understand what GBS is and what it’s victims go through. I also hope that by reading this, someone else will not suffer the on-going emotional and physical trauma I have had to endure.  I must admit that I am a little paranoid of having a relapse, but  have been unable to locate any good statistics regarding recurrence rates and their relationship to the severity of the initial occurrence.  I am currently writing a Research Paper for on GBS,  researching the Natural Therapies I used in hospital and rehab, which I believe dramatically improved my  prognosis,  incorporating modalities such as Herbal Medicine, Homeopathy, Bach Flower Essences and Tissue Salts.

True friendship is like sound health; the value of it is seldom known until it is lost.

WOW!  You really know who your friends are when something like this knocks you off your feet.  To my REAL friends, THANK YOU,  you know who you are, you are the people that rang, emailed and visited me while I was on this journey.  I would especially like to thank my classmates from my Naturopathy course.  I've learned that no matter how serious your life requires you to be, everyone needs a friend to act goofy with.   My father always used to say that when you die, if you've got five real friends, then you've had a great life.  A special warm, loving thank you to my wife with the excellence you strived for each and every day.  You knew the song in my heart, and more importantly, sang it back to me when I had forgotten the words.

Inspirational Literature

I want to thank you for reading my story.  It is not complete yet and I know I will add more as time goes on.  I have not written this in wanting pity, or for any one to feel sorry for me, I have written it from my heart, so that others who may not know of GBS, will learn a little about it.  It's been painful, there have been tears, but it feels good to be able to share my experience.  I'm really encouraged by what so many of you have written on other GBS websites, by the breadth of empathy and, of  course, interest in each others progress.  For me, this has been a source of strength.  I've learned how quickly your health can be taken from you.  Physical healing can be seen by the eyes but emotional healing is long felt by the heart. My life has been forever changed. I still catch myself watching my feet move in amazement. To each of you who are healing, have healed, or trying to resolve the emotional issues that come with this illness, my thoughts are with you. There is healing in time.

Thanks for listening.  I look forward to hearing your success stories.

I am a member of the Neuro-Recovery Foundation in Australia which provides support, information and education to those suffering from the symptoms of all forms of neurological disorders (i.e. GBS, Parkinson's Disease, Multiple Sclerosis, Motor Neuron Disease etc).  I also thoroughly recommend the work that is facilitated at the Quest For Life centre called the "Neuro-Recovery Pathways" program.  This 5 day live-in workshop is designed for people with Parkinson's, motor neurone disease, multiple sclerosis, stroke or neurological degenerative disease. In this program, you will understand how and why neurological disorders develop and why bodies manifest dis-ease in these ways.  Through understanding the development of neurological disorders, we gain a better understanding of strategies to slow, stop or reverse disease development.  I am also a member of the The Inflammatory Neuropathy Support Group (IN Group) from Victoria, Australia which is a non-profit association that provides support to Inflammatory Neuropathy (IN) patients, undertakes research into the cause, treatment and prevention of the illness, and promotes understanding of the condition and its effects.  I urge any GBS, CIDP, PDN or related disorder sufferer to contact this or a similar group in their own country.  I am happy to visit people in hospital, please contact me by e-mail, I am located in Melbourne Australia.  There can be nothing more helpful to a patient's morale than to receive a visit from someone who has made his or her own recovery from the illness. I am available to visit hospitals within Australia and I provide information kits for parents/friends/relatives etc.