My Experience with Guillain–Barré syndrome

Thoughts on my Guillain Barre Syndrome Experience.

I have been encouraged by many to document, in some sort of blog, key experiences and stuff I’ve noticed as I cruised along in this game called ‘life’, in which I was to experience and survive a diagnosis of Guillain Barre Syndrome. If you are here, it is most likely that you already know what Guillain Barre Syndrome is and what its devastating effects are or could be. If you don’t, reading a quick wiki on it will help you comprehend the contents of this blog better. It's not my intention (or even competency) to medically explain GBS to anyone here. What I can explain, is my experience in tackling my way through it.

Perhaps this blog may serve as some sort of comfort to anyone fighting the condition. Looking back as I regain functionality to an almost-normal life as I write this, I still would not trade the GBS experience for anything else. Like astronomy, it is one of the most humbling and life changing experience that can happen to you as a Homo sapien.

So here goes.

It was a dark and stormy night….November of 2011 where I was tackling a stressful event at work at the time when I was struck down with food poisoning. I cannot identify, nor have any scientific evidence, on what the bacterium/viral food poisoning was. My symptoms of not vomiting at all but having almost continuous runny blast watery poop suggest that this may have been some type of campylobacter infection. But this is a mere speculative guess that’s all.

The symptoms of the ‘food poisoning’ started on 5th November of 2011. I paid my doctor a visit and was treated with a prescription anti-biotic (I’ll call it ANTIBIOTIC A or AB-A for short). I felt some serious abdominal pain whilst with this infection. As soon as I took Antibiotic A, I felt better very quickly. The antibiotic was prescribed for a week. I know all too well that one should never interrupt or stop an anti-biotic prescriptions as this may strengthen some remaining bacteria, making them drug resistant. As the prescription of AB-A finished, the abdominal pain and fever returned! Yepp! I still had the nasty bacteria in me!

Back to the doc I went, where it was confirmed that I needed further treatment. This time the anti-biotic was a different one and I was set up to continue on ANTIBIOTIC B (AB-B) for a further prescription period. 

AB-B, like AB-A, worked well on me.

So, half way through AB-B, Wednesday 16th November, off to shave the accumulated beard I went. As usual I shaped my left hand into a scoop to scoop water from the faucet onto my face. I did this everyday before going to work. Nothing extraordinary, except I noticed that my hand had a ‘funny’ shape. The fingers had more space between them despite the fact that I had instructed my hand to form a scoop. And the little finger on each hand, just went to its own separate way – it pointed side-ward. The result of this? Water ran out of my hands.

With the food poisoning saga over – I was ready to face the world and get active again. Having rested for a while, I felt my leg muscles somewhat lazy. Well, you all know, staying non-mobile for almost two weeks, it’s nothing extraordinary. I was thinking on going back to some physical cardio-training to feel ‘stronger’ but at the same time, thought I’d better take it easy for a few more days. 

On Thursday I rested as I felt slightly tired. That same evening I woke up and felt my legs crampy. As if I had over-exercised. Again, I thought nothing of it. I mean, who haven’t felt crampy legs at a point in their lives? Except I have done no sudden extreme exercise of any sort. Ah well, I called my doc and explained over the phone, about this. He suggested that I take some magnesium pills. It made sense that after the severe food poisoning relief I may have pooped so hard that I’ve depleted vital minerals which assist intra-muscular communication, one of which is magnesium.  

I also realised that I was finding it difficult to sign and write. But I didn’t think that much of it at the time - labelling it as extreme stress in my head. I was determined to go tackle a work issue I had, so I could settle down back at work. So I continued on. I was eating and drinking normally again at this point in time.

So yeah, I started the vitamin supplements.

On Friday I spoke with a friend (who happened to be a doctor as well) about the 'lazy leg' thing. I suspected that this was some kind of strange side effect of AB-B. But since only 3 days of AB-B prescription remained, I was advised to continue with the administration of AB-B since the 'benefits outweighed potential risks' and besides, this strange feeling of tired legs could have been through lack of vitamins. All made scientifc sense too.

Saturday morning I woke up. I felt no symptoms whatsoever of the food poisoning. I was ready for work the next Monday for sure, or so I thought. Off to shave, and my hands, they did the strange shape again. I was having trouble scooping water from the faucet to my face. I also felt that the leg cramps were still there. I think, a bit more present than the day before. I popped in the prescribed vitamins in the morning and ate breakfast. I decided to then rest on the sofa during the morning and watch some TV and rearrange some of my thoughts on work-related stuff which was seriously bothering me, causing a taunt amount of stress on me. Now I’m not a stress prone guy, but as much as I keep expectations low to avoid disappointments, I realised I had some things at heart and with sufficient passion and yet I had to come to terms that these would no longer be part of my life. But onwards with the GBS experience story...

At around 10AM I felt like getting something from the kitchen cupboard. So, I commanded my legs, back and arms to get me out of the sofa. They obeyed, but damn it, something was wrong. My leg cramps were stronger. I felt somewhat weaker in getting out of the sofa. But everyone feels weaker when you have cramps in your large leg muscles no? At this stage (since Thursday evening actually) my wife started insisting that I get my ass to hospital, but by now, I was on the ‘taking vitamins experiment’ which I did not want to ruin. So, I explained to her that if I got worse by the following Monday, then yes, off to hospital I would go.

Saturday evening was not better, but whilst on the sofa, I thought that it was not worse either.. Until I wanted to get something. I would try to get out of the sofa and manage successfully, but like someone aged 75 years old would successfully manage. This was strange indeed. My wife was worried. I was not. Come on. Everyone had cramps, cramps were shitty, cramps made you weak. The hand shape thing? Aaaa, that was nothing, I thought to myself. Must be the needless work stress I was trying to cope with.

Every evening I have one flight of steps to tackle before going to bed. I was 30 years old (31 at the time of writing this blog) – a flight of steps is a breeze no? Saturday evening I was struggling. My wife had to help me go up this flight of stairs. I promised her worried mind that if I got worse, I would go to hospital. Honest.

Sunday morning came. I woke up and had trouble going down (yes DOWN!) one flight of stairs, I was having some problems pressing remote TV buttons and the cramps in my legs was still there. I held on to the railing and went down my home stairs and sat on the sofa, resting. I took the vitamins of course.

Sunday evening came – getting out of the sofa resulted in me holding strongly to my wife and grabbing nearby furniture. This was not normal. Yes, I went to Mater Dei hospital precisely at 9PM.
I entered the hospital WALKING. I was seen by a doctor only at 3AM (YES, I spent 6 hours waiting with a condition that could kill in as fast as 4 hours if you have a rapid onset – shameful – but this IS the only thing I could complain about Mater Dei Hospital – although it could have had fatal consequences as I wanted to go home! I was fed up waiting in the waiting area! I wanted to go home and sleep, but my wife insisted, and I obeyed – you obey your wives don’t you?!). Obeying your wives could save your life.

So yeah - I entered the hospital with a limp-walk at 9PM on Sunday 20th November 2011. After 6 hours waiting at triage in hospital, I needed a wheelchair. I was unable to walk without falling. My legs were just too damn weak! WTF?! My symptoms that I could verbally explain to the hospital triage staff were, “I have cramps in my legs and feel weak – I never felt this weak before – it’s like having severely over-exercised”.

At the emergency dept I was inspected by a very nice doctor (all staff encountered at MDH were amazing! I salute them all, again!!) who noticed that my symptoms were indeed something unusual. He suspected GBS, but was very careful not to rush. I was transferred to another section where I was inspected by Dr V. A great accurate nice doctor who inspected me in detail using pin prick tests (and more).. I could feel everything. Even a soft cotton on my toes, yes, I could feel it – but moving my toes, I could not. I realised this at the emergency department! I had problem moving my toes! I was dexterous with my toes! They often doubled by my second fingers, picking up stuff from the floor with my toes! But not today Trev, Toes are OFFLINE!

Amazingly I remained very calm. At this time, the words Guillain Barre were being uttered somewhere. ‘WTF is Guillain Barre?’, I thought to myself…. Sounds French, can’t be good (troll face). The A&E doctor cautioned me and my wife as not to rush and take things step by step until an accurate certain diagnosis can be obtained. Wise words indeed. I warned everyone NOT to tell me anything about any disease. I did not want to read anything about Guillain Barre whilst in hospital. If I did read anything about the condition, it may potentially  ‘contaminate’ what I was feeling and I would be an invalid patient descriptively-wise. So, I wanted to remain neutral and as scientifically accurate as possible to be able to describe accurately what I was experiencing whilst hospitalised.

I was practically paralysed from the hips down and from the shoulder area to my finger tips. I could still feel everything, but movement was very hard to do up to my ankles and impossible from my knees down and ankles down. What a strange feeling! My fingers were constantly curled. Like a baby almost. Not a FIST. Not open flat. But weakly curled. Strange (to me - but an expected thing for medical professionals).

The Ward doctor came to inspect me. He had a team of other doctors with him. I eventually got used to all these inspecting eyes. I even felt safe knowing I was well cared for. I was asked many questions, one of them somewhat leaving an impression on me was “Are you swallowing?”. I was. Why would they ask me if I was swallowing? Such a natural thing to do, you drink, you swallow. Read on GBS to know why I was asked this question.

I was put under observation. Apparently they wanted to see how my regressing condition was doing and meanwhile do a test that diagnoses Guillain Barre Syndrome with certainty (apart from the 'standard' CT-SCAN, ECG, Chest X-Ray and several blood tests). What is this test for GBS you say? It’s a spinal tap. Cerebral Spinal Fluid (CSF) is extracted from my back and tested in sophisticated labs for a particular protein, which, in GBS patients, is found to be extremely high in value. I asked with hope in my eyes, whether it was possible that I be spared this test, but no, it was necessary and therefore needed to be done. Then so be it. I’ll do it.

I remember, in hospital, I was eating soup when suddenly around 6 doctor-looking staff surrounded me with a large white plastic container! Oh crap!!! This was it! The Lumbar Puncture (LP)! I was instructed to crawl like a baby on one side and doctors behind me (medical students under STRICT supervision were there too) were explaining to me before touching me. This helped a lot in depleting my 'speculation reserves' in my brain. When I was touched by a pen I was told so, when I was wiped with disinfectant, I was told so. Nicely done. And actually it was less bad than I speculated in my thoughts. Out of my spinal came out a few ml of crystal white fluid. I’ve never seen anything like it! It’s like clear and translucent! Amazing stuff. I was instructed to lay on my back in bed and NOT MOVE for around an hour. To be sure, I stayed immobile on my back for TWO hours and moved just my eye balls during such a period. I was warned that if I stood up before 1 hour has passed; I would feel a strong headache. I had enough problems as I was, so I obeyed diligently and did not suffer any nasty headaches when I eventually moved.

Thanks to the diligence of the medical labs teams, my result was back the next day indicating clearly a diagnosis of Guillain Barre Syndrome.  {indeed my Cerebro Spinal Fluid (CSF) was found to contain a particular protein as being abnormally high in count. This is a clear marker of GBS.}

After a short period of observation and questions like “ARE YOU BETTER, THE SAME or WORSE?”, usually answering ‘Dunno, better, I think or the same’…I later realised that I was getting worse in actual fact, but I was not quick to admit it. The toilet and shower facility was 4 metres away from me. It took me 10 minutes to get to it, aided by my wife and a Zimmer frame. I fell numerous times. I was unable to get out of bed unaided. The bed had to be lifted high-up from the floor so I would ‘fall’ from it to a standing position. In order not to fall I would ‘lock’ my knees so my bone structure would support me upright rather than muscles. This technique was not always successful. I still remember Mr G’s (the person  who did a surface EMG on me) warning - “Trev, you are not well - you are extremely weak! - do not abuse and do stuff completely on your own as you are now!”. Wise words indeed.

The weakness was extreme. The following tasks were IMPOSSIBLE to do:

  • Slice a Sausage using knife/fork
  • Holding a metal knife and fork (even plastic ones were 'too heavy').
  • Holding a Mug
  • Holding a Cup
  • Holding a paper cup half-filled with water.
  • Opening a biscuit packet (remained impossible for up to 4 months after being discharged).
  • Splitting a biscuit
  • Tearing a piece of paper
  • Waving properly at someone
  • Moving Toes
  • Slicing the cooked chicken (hospital food)
  • Opening anything that is packaged. Damn!
  • Hugging my wife
  • Holding my wife’s hand
  • Sign my own signature on the sick-leave certificates (for work).
  • Write anything
  • Scribble anything
  • Hold a pen
  • Hold a pencil
  • Hold a crayon
  • Petting a cat
  • Handling Fiffy cat (or even a hamster for that matter!)
  • Answering my mobile phone
  • Letting go of my mobile phone when it was in my semi-curled fingers - I had to 'shake' the mobile away from my hands.
  • Go to the hospital bathroom - I was often accompanied, as in a few days since entering hospital, I had developed terrible 'foot-drop'. This is when your plantar/foot (the flat bit) area just DROPS. I had no strength to pull-up my foot/toe area UP. Without such strength, you fall over your own foot. 
  • And then, you'll have another problem - "getting back up". It's very very difficult with 'foot drop'.

And in some areas of my foot, hot was felt as cold, and cold was felt as hot. Now this is some confusing stuff. You could burn your foot next to a heater and could swear you felt the heater blowing cold cool air like an air conditioner in Summer. It happened to me. Fortunately the burn, was a minor one.

Hey- but at least I could feel and talk and joke around like a fool in hospital. I saw the hospital as a different environment from which there was plenty to learn.

Yeah – I made a few friends there too, despite my paraplegic-like condition.. One should never give up. And there was hope indeed. It was brought to me by Science. I knew that only Science and Technology (together with some raw will-power) would provide save my life and lead me to a better quality of living.

The Bottled Life Savers

It was decided that I was to be injected intravenously with Normal Human Immunoglobulin packaged in the form of bottles labelled as Vigam Liquid. The process was quite straight forward. Via dripping bottles, clear liquid would flow to my veins, causing my body to ‘see’ too many immuno globulin and stop producing the Trevor-destructing immuno-globulin. It worked. At least, I stopped getting worse, eventually reaching a 1 to 2 day plateau of not-getting-worse-not-getting-better (except for the occasional blood-pressure fluctuations, caused by the intravenous substance). Over further days in hospital (I spent 20 days in hospital), I started regaining movement bit by bit. I could see my legs moving better…in 10 days after being treated with immuno-globulin I could wobble-walk!

I still remember the great day where I was being assisted to walk with a Zimmer frame….where I took a GREAT RISK and gave the Zimmer frame a nudge away from me – and did my very first few small weak steps without frame-support! Yes – there was hope that I would walk again! I was so excited – I did walk a few paces without the frame! That was enough though – I sought the frame again as I felt that I was going to fall. But it was a major feat. I walked between four to six paces unassisted!!!! It was amazing. Tears rolled down my cheeks as I looked at Mater Dei Staff, my wife, family members who were there at the time. I would never forget this moment. My legs – they were taking a few commands from me. Just a few and weakly– but fuck, a few days before it was close to none! Yes, there was progress, and that was all that mattered.

And medical assistance now changed form to PhysioTherapy and Occupational Therapy sessions. Yes, sitting on balls, walking on funny squiggly mats, having therapists stretch my legs, arms and feet numerous times daily. Not moving (without choice now) causes a lot of shitty things to happen to your body. Tendons start shortening and yes, I remember my calf muscles. They were like sacks of jelly water. Before hospital I had solid calves that functioned well. Not in hospital – they died....or as the docs used to say, ‘they atrophied’. Muscle atrophy is muscle wasting. And along with muscle wastage, your morale wastes away too.

But in hospital, some real morale boosters are in the form of nurses, staff, physiotherapists, occupational therapists and doctors. And had they not been there for me, I’m quite certain my recovery would have been different.

At Home

I was sent home after around twenty days. Upon my wife opening the door for me ( a soft door lock key was impossible to turn ) and stepping in the hallway I heard a long long greeting, NYANNNNNNMIAAWWWWW. It was my beloved Fiffy Cat! She missed me. She smelled me, then touched me with her paw. I missed her so much. I wanted to pick her up. She wanted to be picked up, like before no?. But no.

Picking a cat up requires arm strength, it requires finger strength, it requires co-ordination in balance, it requires bending of knees and supporting own’s (and eventually, plus cat) weight which your foot has to compensate for by adopting to the changed centre of gravity. I had none of that – and which is why I felt really bad at home. I thought that being at home would boost my morale, but it is at home where I really started realising that all the things I was used to naturally doing were all impossibilities.

As soon as the cat greeted me I was craving for a nice plate of spaghetti. They don’t make spaghetti in hospital (why not?! Dunno... too carby perhaps?). We’re Mediterranean fond of Italian cuisine!

So my wife made a beautiful big plate of spaghetti any manly man would crave for. It was delicately prepared with a good touch of my wife’s usual care and love. I grasped (somewhat) the fork in my right hand, and pierced the spaghetti as usual. And then I stopped.

"I did not know what to do ".

That was the exact feeling. I KNEW what I wanted to do. I wanted to twist the fork clockwise to wrap the spaghetti around the fork and then eventually, into my mouth it goes. But NO. I DID NOT KNOW HOW TO DO IT. In actual fact, I was commanding my hand to do the movements, but there was no connectivity. At all! The feeling that you get however, is ‘I don’t KNOW how to do it!’! And that feeling, is one horrible feeling, to say the very least. Can the brain UNLEARN such basic tasks that rapidly? The same problem was encountered when I tried to fasten/unfasten a shirt button - or any button. At the same time, as I regained movement, these little usual assumed tasks were all key benchmarks in my life as I learnt again how to do them, once the movement was back with some measure of strength after MONTHS of being discharged from hospital.

As time went by - the nightmare of pain.

Every evening for the first 3 months after I was discharged from Mater Dei Hospital, whilst in bed or resting on the sofa, I would get electrocuted with pain, and spasmed cramp like nasty feeling of electrical pain twisting sweating pain from the hip down (mostly). Yes, the fragmented sentence is on purpose – there is no word to describe the nerve boney pain caused by this condition – and so, I called it SKUMPERT. I had skumpert sessions all nights for the first 3 months. Paying a visit to my neurologist, it was suggested that the only real remedy was to ease the pain was through taking Amitriptyline. What? You see, it was explained to me that from what I understood, the brain has this pain centre, whose evolutionary purpose is to orgasm at PAIN. Now since my nerves were demyelinised and therefore were not conducting properly, pain was not arriving at this centre, and this centre could be ‘inventing’ pain to appease its sadistic self. Again, this could not be just the cause of this pain, it could be that my nerves were regenerating myelin and until it was done with the myelin construction – SKUMPERT - pain fun for me.

Despite the Amitriptyline solution to my pain, I decided NOT to take this medicine despite having a prescription at hand. I would have rather continued to feel the pain (which I did) rather than creating some secondary complication caused by this medicinal. You see, I wanted to remain as drug-free I possibly could, so that when I felt something, I had no doubt that it was caused by GBS and not by some drug. Perhaps it was a needlessly stupid thing to do – but that’s what I did.

I was managing to feed myself (somewhat), shower myself (somewhat) but not drying myself. To dry yourself, you need a towel. You must be able to GRAB the towel (despite its weight). As soon as you grab a towel, it starts throwing you off-balance because of its weight and pendulum effect – therefore you need to compensate with counter-balance – something I could not do very well. To dry your lower extremities, you need to bend you knees just slightly and lower your back and compensate for having  your centre-of-gravity moving slightly forward – BAM!!!! On the floor I went. So drying myself was on the impossible list of things that I could not do for a few months. For three months to be exact, I was unable to towel-dry myself. Not without falling like a broken folded chair.

So you think you can dance? - The 'dancing' phenomenon.

Zygote Body - A free online tool I used to discover where nerves actually are. I could trace 'pain paths' with accuracy and further verify that the pain was related to nerves.

I learnt, the hard way, that your foot area (specifically the muscle peroneus tertius and the likes) are responsible for balance. My offline nerves were not carrying signal related to balance and floor textures to/from brain. And so, my brain compensated by balancing through the use of the HIPS. This gives very rudimentary balance, and so I appeared to an observer, as if I was dancing, or wobbling under an appearant affect of alcohol intoxication. And like this, I remained for almost 4 months! I've now danced all my life's worth of dancing, so I have the perfect excuse to avoid dancing at parties or weddings now. With very valid reason! Fitted carpets were my worst nightmare - I often lost balance on them, especially if I had items in my hands, due to their 'soft' visually unpredictable textures. In January 2012 (ie: around 2 months after hospitalisation) I had a new year party which I was determined to go. I had to to be constantly accompanied so that I would not fall. The venue was in a hotel full of various types of fitted carpets and tiles - occupying me with hundreds of assisted route calculations.

And I shall be 100% honest. I psychologically fought real hard not to let GBS win over my morale and mind. At times, GBS did win, as I definitely imagined myself permanently crippled and at moments of weakness, I imagined myself secretly wheeling myself to a high bridge or a high location……to take a good view of course….. of course.

But morale boosters came along, as I continued to regain movement and fluidity of motion. You see, it’s not just about moving, it’s about moving with fluidity and not like a rough robot or a flap of a carton box. As more pain whipped at me, I noticed that, each time I would gain some better motion in my fingers, legs, general walking (improving from limping to less-limping to somewhat walking, to looking like walking, to walking). So pain was soon starting to be associated with the possibility of improving. It was (and still is) associated with myelin/nerve repairs in my mind.

Morale boosters were also encouraged very significantly through my wife. She took me vehicle rides and ensured I would not give up. Facebook friends kept the encouregement going too. Despite GBS being, at a glance, physically destructive, it is also emotinally so. Emotional support was given in continous loving doses especially by my wife. Family & friends, I also salute you all for being there. I was not alone. And perhaps through this little disjointed blog of mine, you too will not feel alone, even if you have limited emotional support and are suffering GBS.

Yes, some of my timelines now (and these apply only to me - if you are fighting GBS, your timeline of improvements may be significantly different). 7 months after hospitalisation, I could open a garage-door lock with some confidence. At this time too, I could start buttoning shirts and pants again! 8 months after hospitalisation, an almost-fluid motion to my movements started. I no longer walked too much like a 'square robot'.

When I first attended my occupational therapy session, pressing an aerosol can was impossible. My hands could feel, my finger-tips could feel. I never had the ‘pins and needle’ sensations many with GBS seem to report. I always felt everything well. Except for some parts of my left leg where I felt hot as cold and cold as hot.

There were also no other chemical treatments that I took. It was 'just' physiotherapy and occupational therapy. I obeyed (and still do) every single instruction that both my therapists gave me. It was frustrating playing with putty, balls, blocks and wobble boards. VERY FRUSTRATING - even when I continued such exercises at home. But I knew that the solution was to shut up and obey. And soon, from unable to stand after sitting on the neuro-gym chair – I could stand back up – for a few weeks with extreme difficulty and with assistance and now, 9 months after diagnosis, I could do it numerous times without problems. Up to 4 months after being discharged, I never sat down on chairs (or toilets for that matter). I FELL onto them. As soon as I bent my knees, even by just a little bit, they buckled under me. Standing back up, required me to hold onto something and push or pull UP.

The Afterthoughts of Today and Tomorrow…

GBS is an amazing experience. I don’t wish it upon my enemies (that is: no one – I have no time for such pointlessness as to even have an enemy). There are however, a few people I’ve met in my life who would benefit greatly by having GBS and then quickly recover from it (I’ve been told that ‘quickly’ in GBS terms is around one year). People who need a good dose of humbleness and humility in their lives. On those persons, it could leave some real long term benefits.

As I write this blog, around 9 months after diagnosis, I do not take my keyboard ticking fingers for granted, I feel my spine doing its job, I feel muscles supporting my sitting position and I’ve learnt a lot. I feel all fingers doing what my brain tells them (despite the tremor that is still evident on both hands).

And I learnt on how strong I could be when faced with such a crisis. Perhaps I learnt to be strong when being strong was the only option I had left.

As my therapy sessions have now decreased to 2 times every fortnight, therapists are still working on me to improve my walk to a ‘normal’ one (as much as possible) and finger interossei movement come back. The pain decreased to low and tolerable measures now (except for a few nights here and there).

I’ve been promised that as soon as I can stand on my heel and have my hands improve, I’ll be out of out-patient therapy for good. I’ll fight it off till the very last moment!  And work stress that could have triggered the food poison, triggering GBS? I changed that as soon as I could (a few weeks after being dismissed from hospital and assisted by my wife to physically arrive at an interview venue with the aim to change the workplace conditions). I am now very happy at my new post. It was high time too that I did something to improve my working conditions and environment. The catalyst was the soffit tile counting at Mater Dei Hospital and of course, GBS.

So my friend, if you have GBS - Don’t give up. It’s an experience I don’t want any refund for. That experience is mine. And had I the choice an UNDO, I’d like it to remain there.
Yes, GBS leaves a serious psychological scar on you (and possibly a few physical problems too), but in my experience, I learnt a lot, about a lot.

Life is an amazing feat of probability, bordering on the improbable, yet it is. A lot of things changed in my life and those around me since the onset of GBS. And viewing matters in a long-term fashion (the only way you should visualize things to increase the chance of being happier), has been an experience I would never forget.

Anyone still tackling GBS and is reading this - I tell you - stay strong and fight it. Do physiotherapy, do occupational therapy and keep trying. Improving your psyche and morale can only accelerate positive effects on you.  
And know that IRL, science is our only key to hope. It's what kept me going.

And for those of you reading this who never experienced serious debilitating illness and have been thinking on change, for a long time, a change to the better, and change in your life, a holiday, a dream, and yet done nothing about it yet, what are you waiting for, GBS?


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  1. Inspiring story, Trevor. Our run-ins with GBS are so different, yet the theme is the same. It's a humbling experience that forces you to re-examine your priorities, and makes you appreciate the good times all the more. Good luck with your continued recovery.

  2. Trevor, What a well written blog! My nephew has been diagnosed with GBS last week and Google led me to your blog. He is back home undergoing physiotherapy after five days in hospital with the protein injections.I read your whole blog twice. The second time much much more slowly. You have really detailed the experience. May God Bless you. You are an extraordinary man, Trevor. I take this opportunity to salute you and your spirit. I cannot be of any assistance from thousands of miles away but please believe me when I tell you that tears were streaming down my cheeks when I was reading about your ordeal.May God bless you. May you be totally cured of all the symptoms. May 2013 bring you lots of joy happiness and good cheer. We shall pray for you. Reply if you wish on

    All the best to you

    Sunil Kumar

  3. Trevor, my 10 year old daughter is battling GBS. She had IVIg, moved to inpatient rehab, home for 4 days, relapsed, back to acute care for 7 plasmapheresis treatments, to inpatient rehab again and was discharged on May 16, 2013. We are struggling so much with her regression, continued weakness and lack of motivation. Your descriptions provide me some hope that she will till recover fully, though it seems a long way off now.
    Best of luck to you!

  4. Trevor - I just read your blog - WOW, QUITE POWERFUL! My brother-in-law was diagnosed just yesterday with GBS and is currently in a hospital in Detroit, MI receiving the immunoglobulin therapy. Your blog will give him the inspiration and facts he needs to cope with his disease and navigate the curves on the road ahead. Best of luck to you and thank you for taking time to put your story out there for people to know GBS through a patient's eyes.

  5. Hi Trevor - thanks for a well - written, informative and, interesting story.

    I know the feeling to an extent, having had GBS for 18 weeks now - just 2 weeks in hospital and slowly improving day by day.
    However, I count my blessings as I was never too ill to walk (although it was a close run thing) and was always able, albeit with difficulty, to wash and 'toilet' myself.

    It's a nasty illness and one of my bugbears is walking down the road looking as if I'm drunk - I've taken to carrying a stick which I use occasionally to keep my balance.

    One thing I'd like to say to Nicole (comment above) is your daughter will likely recover fully, though it may take quite some time. This flipping peripheral nervous system takes ages to repair itself, but repair itself it does. Progress appears very slow, but one day you'll notice that your daughter is able to do something, or appears to balance better - that's when you'll get a boost and realise that though it takes time, it is possible to recover.

    I'm writing this in October 2013 - any update on how you are, Trevor?

    Superb photos, by the way.

    1. Hi Chris - Thank you (and many others) for your comments on my blog. I am glad that my story is inspiring many world wide. Ahh..the amazing internet...

      Next November 20th, 2013 will be my 2 year anniversary since diagnosis. I am very happy and lucky to have a very good prognosis. I am still not 100% but very close. I am still improving and improving in sudden 'bursts' of improvements that usually follow a few nasty cramps and sometimes, electrical pain.

      My plan is to publish a brief update on further improvements (and anomalies) about my body that I've observed since writing this blog.

      Meanwhile, I thank you all for your support and readership. Stay strong, stay determined.

  6. Nice article, Mr. Trevor Sammut. I have learned quite a lot after reading your experience. I was getting the feeling the it is me experiencing the same problem of Guillain Barre Syndrome with you. Thank you for writing beautifully.

    Arnold Brame
    Health And Safety Consultant Peterborough

  7. Two Years Later (an update) is now online.

    1. The FOUR YEARS LATER page is also online - see the link at the top of this page, on the right.

  8. Hi Trevor - I have been so interested in your experience with GBS as it almost mirrors what I am going through at the moment. I started with the cramps in my calf last March and now in my 10 month of recovery after going through a near identical process as yourself. It was so encouraging to hear that you have made a near complete recovery two years on - I am still on the robotic walking and balancing stage after initially being told that it would take 4 years as I had the axonal form of GB. A great blog! I also made a monthly diary which really helped when you have a dip. I am certainly "up" now I have read your story - many thanks ....Peter

    1. You're welcome Peter - stay strong friend and FIGHT IT. If you want to keep in touch, send me your contact details (email or skype) via this message box (your contact details will NOT be published here).

      Best of luck my friend!

  9. Good on you for writing this up.

    In the mid 90s I had GBS. It probably took me six weeks before it became critical and I had a miserable time with a horrible family doctor who had misdiagnosed it as kidney stones. (The pain I felt was every night between 2am and 6am -- excruciating lower back pain) And so one day when I finally found a neurologist who gave me the name of a disease, Guillian Barre, I went home, used "Alta Vista" and found the write up of a person who had very similar symptoms as me, AND LIVED.

    (My symptoms were excruciating lower back pain, and what you refer to as lazy legs, I referred to as walking through a swimming pool.)

    So, your writing it up is almost certain to help others who will be confused and frightened by the diagnosis and google to find personal experiences.

    I spent one week in the ICU mostly paralyzed. I had no problems breathing or swallowing, but couldn't walk, and had facial paralysis. I had $50,000 of gamma globulin dripped into me to treat it in these enormous 2 liter IVs. And then one day, my neurologist got me out of bed and in my hospital gown we went into the emergency stairwell and he had me walk up and down a few flights of stairs. Quite an improvement from three days earlier when I couldn't move much on my left side and nothing on my right.

    One week in the hospital and about 9 months to truly get over it.

    And yeah, I still wonder if it will come back.

    Are you familiar with Joseph Heller? Author of the WWII black comedy Catch-22 turned into a movie in the 70s? He had GBS and for him it was a very swift onset. He wrote a book about it along with his friend Speed Vogel, titled "Good as Gold". If you are a Joseph Heller fan or would just like to read a poignant and funny book about his experience with GBS, I can recommend it highly.

  10. Hey trevor!! I just read your blog. I was diagnosed with GBS on the second of january 2014. I experienced almost everything that you have although i was only in the hospital for 11 days. My extrmities are almost back to full strength now but i had my face completly stop working for me. I was able to swallow the whole time but couldnt move any muscle in my face. My eyes wouldnt shut all the way(they still cant right now) i cant eat right because i cant manuever the food in my mouth as i chew. And i cant use a cup because i cant wrap my lips around the edge so it causes the drink to spill all over me. So i have to put all of my drinks into water bottles so i can be able to pour it in like a waterfall. I am only 23 years old but it is slowly it is coming back. But after i read this it felt so familiar. I just wanted to say thank you for sharing this and shedding some light on the recovery of this disease.

  11. As I read through your story, tears ran down my cheeks. I couldn't help but remember my own experience with GBS three years ago. You're right, it is one of the hardest things that I've had to come across in my life, and I am still battling the psychological scars that it's left me. Thank you for sharing your story, and for giving me a reason to continue fighting. It was a true blessing to come upon this blog tonight, and to realize that I am not alone. That things will be okay, and that despite my slow progression towards my recovery, there is still always hope.

    Praying for you and your family! Much blessings and love!

  12. Trevor, my dear friend found your Blog today. As I read, I found so many similarities with your experiences. I have felt so alone, as I really don't have anyone that has been through this before. My family and friends are a great support, but I have had difficulty expressing what I am dealing with. I have shared this with them and I'm sure it will give them a greater understanding.

    I can't thank you enough for sharing your story so eloquently.

  13. Hello to all the sufferers of GBS!

    I am turning 50 on the 11th of August and was diagnosed with GBS 39 years ago at the age of 11. At that time there was no medicine at all to help with the recovery process. I was paralyzed from my neck down and had to learn to move every body part through physio therapy (mostly in the swimming pool of the hospital) for the first three months. I took 7 months of absolute willpower (as you know you have to tell your unresponsive toes to move untill they do!)to learn to walk again. I was taught to crawl first and later to walk with crutches and eventually on my own. I went on to enjoy a normal life, career and two wonderful children (eldest now 20 years old). The only draw back that I live with is poor balance (I will never be able to ride a bicycle) and very poor ankles. I have broken my left ankle three weeks ago and while nursing the injury was thinking about my GBS - according to the doctor that is why I slipped on an even floor and had no control over how I fell. Thinking about it made me to Google the most current on the syndrome and I came across this blog. I am so thankful for new developments that can help a sufferer in healing. If I think back at the absolute drilling I went through with the physio's and my mom in order to teach myself to use my body again, I feel a sense of unbelief. The courage and willpower that I had received at the age of 11 to get myself up and walking again was absolute Grace! So for parents with children and the children themselves, you have my utmost empathy and I would encourage you to stick to a tight routine of exercises and lots of encouragement. For someone that does not have the syndrome it is very hard to understand how it feels when your brain tells your body to react but there is just nothing. I remember my toes were the last parts that needed to start working - I had to pinch a towel between my toes and it just would not happen! For days on end we sat with the towel and my mom told me to do it and I told my toes and they would not listen!! And eventually it happened....... a tiny little movement happened!!
    There is hope!!!

    1. Hi, I'm wondering if your still having any issues due to the GBS? I was diagnosed in Feb 2012 and still have problems with my hands and feet. Thank you

    2. Hi Sylvie, sometimes I do yes. Recently I spent 2 days in extreme pain and after that I slept a whole day in recovery. At other times I have hand tremors and random cramps. I'm almost 3 years away from diagnosis. At other times I need to rest and then I'm better.... I guess one has to listen to one's body... Perhaps I would have over done it with exercise or physical activity of sorts... Don't give up!

    3. Hi Trevor, I was reading your blog and you started your symptoms in Nov 2011, at that time I had a surgery on Nov 1st, 2011 and then Mid Jan 2012 I had a bad cold followed by a bad flue and not because I got the flu shot as I never had it and that's when my symptoms started with my toes getting numb and my legs were sharking so bad I could barely walk, but at the same time I felt that there was something that wasn't working as I was feeling weird a part from the cold so I got a blood test done and they said that I had to take some antibiotics for three days because my white cells was up. That's where it all started, they thought at first it was from the surgery but it was to far out from when I was hospitalized in Feb 2012 and stayed there for 3 weeks.Once in the hospital I couldn't walk anymore, couldn't lift a cup of coffee either and more, but there is a lot that you mentioned that I went through as well. I saw a phrase that you use and that I said myself when I was diagnosed and that phrase is " I don't wish that upon my worst enemy " and the other one I use to say is " it literally gets on my nerves " lol and still is. I was 1 an half year I couldn't walk on my right heel just on my toes and couldn't have nothing laced around my ankle and it still bothers me. Because of the GBS I'm losing my job as I can't perform the physical part anymore (Military) so I'm being medically released maybe next year. Right now only working 9 hours per week due to too many problems and have to try to find something else that will suit my capability. I guess it will take time for it to come back, I know for a fact that I lost a lot of strength and my hands and feet give a lot of problems. I was reading the one that said that he had it 39 years ago and it seems that he still have some issues. I never heard about GBS before I got it. The pain, I can't describe it, it's EXTREMELY painful when I was in the hospital. It's the first time that I'm sharing my diagnose with someone and can understand what I went through and still ongoing. I appreciate you blog its very detailed. Good reading for anybody that is going through the GBS. Thank you Trevor and hope you have a good recovery. :)

  14. Thanks for posting this article about GBS. You have opened up my mind into this type of disease. I hope that you find something that is working for you. - Jennifer

  15. Hello,
    Hope you are doing well now. My Dad was diagnosed with GBS a week back. Since then we are tackling this monster of a disease. Your blog gave us hope that things will be better. I have read out your story to my Dad.

    Good Luck and Best Wishes :)

    Monika From India

  16. Martina Frendo15 July 2015 at 16:06

    Hi Trevor,

    First of all, incredible story! This article is a very informative one and I had never heard of GBS before. I admire the fact that you were able to write this so beautifully despite the fact that it is not a pleasurable experience. This article truly made me feel like I was actually living the experience with you and made me realize how strong you had to be throughout your recovery.

    I am very grateful that today you have regained most skills and that you are willing to help others who might be going through the same experience and also those who, as you stated, may feel reluctant to change their life, to build up the courage to do so, because nothing in life is impossible if you truly work hard for it.

    Another thing which I found very striking was the fact that you were able to find the positive in this tough, challenging experience. To me this is very inspiring and meaningful.

    To conclude I would like to wish you the Best of Luck in life and I hope you continue to view things, the same way you did with GBS.

    Martina Frendo (Malta)

  17. Thank you all for your comments! It's quite incredible, as the hits on this blog keep increasing. I plan to post my progress at year 4 away from diagnosis...

    I sincerely thank you all for taking time to read my story for sending me your comments. There is nothing nicer than fellow humans trying to help each other. Keep strong...

  18. Hi Trevor, I read your blog and felt a familiarity - I'm an Aussie girl with GBS (January 2015) and thought you sounded like an Aussie guy, until I looked up the hospital you attended - surprise! Your detail reminded me so much of what I have been through. I spent 2 months in ICU, then onto rehab, total of 6 months away from home. I hope Fiffy cat can curl up on your lap at least. I came home to our ever aloof cat Harley - he doesn't mind if I'm there or not, as long as someone lays the food on! I certainly have my down moments. My rather stiff fingers don't worry me too much; I can now touch type again, which I'm very thankful for, and use a pen. I can walk, albeit, a little 'robot' like, but slowly improving. My feet are extremely sensitive, and with my nephew's wedding to attend at end of December, I probably tried on 20 pairs of 'comfort' sandles and could find only one that I could walk in for a couple of minutes without discomfort. The other thing that bugs me is my mouth; it seems to have changed shape with the upper lip area somewhat swollen and stiff - I therefore have trouble eating 'nicely' and keeping food in my mouth while chewing, so I so far have avoided social eating gatherings, but with Christmas and wedding coming up, will spend time with my hand in front of my mouth as I eat. I know that my mindset is all important; the motivation to exercise, to make contact with friends, to get out of the house and remind myself that there is always someone else struggling with more than I have on my plate. All the best Trevor, from Lynne in Melbourne, Australia.

  19. Greetings Trevor, from Minnesota, USA. My name is Melanie, which literally means "mysterious" much like GBS which I was struck down with July 2012. First symptom for me was extreme pain in both my feet/toes which lasted exactly 30 minutes, then they were numb. Three hours later, Both hands/fingers experienced the same pain for exactly 30 minutes, then they were numb. This was on a Friday late afternoon and by Sunday morning at 6:00 a.m. I thought I was having a stroke because I had such weakness that I couldn't walk unassisted. My daughter brought me to the E.R. and within 2 hours I was paralyzed from the neck down. Two days later, in ICU, the left side of my face became paralyzed also and I had great difficulty speaking and even more difficulty being understood. I stayed in ICU for over 2 weeks and then was transferred to a nursing home transitional care unit for 5 weeks. I had physical, occupational, and speech therapy while there. Here I am, 3 1/2 years later, still not completely healed. I have numb extremities, balance-challenge, and weak legs. I still need to sit for a few minutes after I take a shower, while the sweat pours off of me from over-all weakness. I, like you, would not trade my GBS experience if given the chance. I'm very glad you have come along so well on your recovery and that your darling wife has been by your side. I can so identify with you about the emotional aspect of GBS, but what else can we do but fight?!

  20. Such a terrible disease. I was very glad to read your story and that you only had to spend 20 days in hospital and were able to walk again. I wished the same for myself, but I am still fighting with GBS almost 20 years later.


  21. It is so incredible to hear the stories everyone is sharing. Thank you for doing so! I am a student within the field of arts in medicine/arts in health, and have been doing a small amount of research out of personal curiosity on the current situation and possible correlation between Zika and cases of Guillain-Barré syndrome in patients. First of all, I find this to be extremely interesting, and secondly, in the context of art and healing, I was wondering, if in conjunction with the specialties of a nurse or occupational therapist during rehabilitation, if artistic activities were ever used in aim to gain back some dexterity. I would love to know your thoughts on this, or to hear if anyone has engaged in some of these artistic rehabilitation exercises, or knows of any arts-based research that is being conducted in this focus. Much appreciated, and thank you all again for sharing your stories!

    1. Thank you for your remarks. Quoting CDC at CDC.GOV "Current CDC research suggests that GBS is strongly associated with Zika; however, only a small proportion of people with recent Zika virus infection get GBS. CDC is continuing to investigate the link between GBS and Zika to learn more."

      One has to keep in mind the rarity of this syndome.

      On the use of artistic activities to enhance movement and fine motor control, yes, such therapies are indeed encouraged, such as playing the guitar, gaming, etc as such activities do stimulate muscles that do need the extra stimulation whilst at the same time can have a calming or pleasurable effect on the mind.....unless the patient becomes even more frustrated at trying to do a hobby that came naturally to him/her before but is now an uphill struggle due to GBS.... patience and persistence are key...

  22. I at day 41 and in pain, your blog provides some hope. The pins and needles for me is quite severe.

  23. My son came down with this in August and was finally diagnosed in October. It is a long journey for sure. Thank you for sharing your story. GBS is challenging for all concerned. Your story gives me better insight on how he might be feeling as he is quite an introverted person. Best always!

  24. Hello I am Angela, in the 1978 I was diagnosed with this. I was 7 years old, only mine started in my eyes. I still had pain in my legs and hands. I have foot drop and havealot of problems because of it. It has been a very long road for me. Even now my hands and feet hurt, and have a lot of weakness everywhere. Do any of you still experience problems after ?

  25. I got GBS 9/27/17 from the flu shot. I went to the hospital immediately and got treatment almost right away. I feel very lucky compared to many of the stories I see on here. I've regained the motor skills in my hands and fingers. I still have some pain in my hands and feet, but have been walking fairly well. It was so depressing. I was an athlete before this so it was really an emotionally painful hit. But this is just something that I will have to work back from like anything else. Thank you for your story!!


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