My Last GBS Post

This is the last time I’ll be posting here as there won’t be much more to add in the near future.

I am walking again after my fractures in June, albeit very short distances to begin with, and will probably get back into the aquatherapy pool next week.  To prevent further fractures, I now wear skateboard knee pads when I walk.  I’m a plump 61-year-old grandmother so the image of me in knee pads can be imagined and, yes, it IS a funny one. Thank goodness I still have a sense of humour!

My fingers are still improving slightly every month but it’s unlikely that I’ll ever carry anything heavy again as it’s 3,5 years since I first developed GBS so my chances of making a full recovery are out the window, so to speak.

And that’s okay.  I’ve made peace with it and accept that this is my new “normal”.  Giving up is not an option and I’ll continue with the physical and occupational therapies to achieve every bit of strength that is possible.

Thanks for reading my posts.  I hope they’ve helped at least one person.

If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl. But whatever you do, you have to keep moving forward.

Martin Luther King

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So, I did break something…

…two somethings, in fact.

After waiting a week after my fall I didn’t see any decrease in the swelling on both feet or my right knee, and the pain didn’t lessen either, so I went to the hospital for xrays on 5 July.  Result: a cracked metatarsal (long bone) in my left foot and a broken right patella (knee cap).

I was immediately admitted as the patella would need to be wired together.  The left foot didn’t need surgery and was put into a “moon boot” that cushions and stabilises the foot, and it also serves as a walking boot.

The orthopaedic surgeon, Dr E, scheduled me for theatre on 7 July as, given my Guillain-Barre Syndrome (GBS), he needed me to be checked out by a neurologist and a specialist physician on 6 July before he would proceed with surgery.  Both specialists who had attended to me when I was in ICU three years ago were on holiday, so two new specialists saw me and gave the go-ahead.

The anaesthetist, Dr F, checked me out too and I notified him that I had signed a “Do Not Resuscitate” form.  He was taken aback by this but I explained that I had already cheated death once and didn’t want to be resuscitated again only to left in a vegetative state.  That wouldn’t be fair to my family.  I told him that anaesthetics generally produce three side-effects in me: hypotension (low blood pressuee), hypothermia (low body temperature) and crying.  I don’t know why I’ve cried after previous anaesthetics as it wasn’t due to pain. He didn’t appear surprised and just smiled and said “Oh, you’re one of those!”.  He also assured me that he’d make sure that I would be safe.

When I got to theatre the Bear Patient Warmer system was waiting for me.  I know of this equipment because I worked for the company that supplies it.  The heat makes you feel as if you’re enveloped in a warm cloud.  Lovely!  Needless to say, I sailed through the op. When I woke up in post-op my brain was clear, I was warm, and had no urge to cry.  The first thing I did, however, was check whether my hands and arms were still mobile.  They were, but my body felt weak and my knee was very sore.

My leg was in a full-length telescoping brace, with the knee-lock set to zero degrees flexion.  One hour after returning to the ward a physiotherapist arrived and I had to stand up and walk!  It was difficult because my strong right knee couldn’t do any work and the weak left knee was weaker after its one week of inactivity.  With the physio on one side and a nurse on the other, I eventually stood up and staggered about two metres while holding onto a walking frame.

Dr F saw me that night, said the op had been successful and I could go home the next day if I felt well enough.  The brace had to stay at zero deg for two weeks, after which he would bend the knee to 30 deg for two weeks, and then to 60 deg for the last two weeks.

Getting into the car to go home was a challenge.  I have long legs so sitting in the front passender seat was impossible.  Not being able to walk backwards or bend my right knee meant that I had to slide forwards from the wheelchair onto the back seat – no mean feat as there isn’t anything to hold on to in order to do any self-sliding.  Never have I been more grateful for a transfer board; it formed a bridge between the wheelchair and back seat.  One person lifted and slid me forward on the board while another, inside the car, lifted and pulled my legs.  Success!  Getting out at home was much easier.

Having to keep my feet up all the time is uncomfortable.  The pain medication gave me added problems so I had to give them up and tough it out through the pain as over-the-counter medicine was ineffectual.  My emotional state at home during the first two weeks waxed between resignation and frustration.  On days of extreme frustration, caused by the enforced immobility and increased sense of loss of independence, I felt utterly hopeless and wept, wanting my old life back.

I have, since, pulled myself together.  Again.  I’m halfway through recovery and will start rehab in three weeks’ time.  Dr E adjusted the brace for the first time last Friday and the second adjustment will be done next Friday.  I can now easily bend my knee within the 0-30 deg range and the left foot is also pain-free.

My recovery from GBS may seem to be two steps forward and one step back, but every step now has to be forwards, not backwards or sideways.

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment. – Buddha

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Another fall! :-(

My left knee gave out under me on Wednesday morning as I was walking up the first ramp from the bedroom to the sitting room.  I don’t know why it buckled and can only guess that I wasn’t focused on locking my knee before taking my next step.

This is my fourth fall in 15 months.  I never fall backwards.  I go straight down onto my knees, with my toes bent towards the tops of my feet.  It took a lot of manoeuvring to get me down the passage and onto the bed.  Waves of nausea washed over me in response to the pain.

The first thing I checked once I was sitting on the edge of the bed was whether I could extend my lower legs.  I could, and immediately felt relieved as I dreaded another avulsion fracture which would have kept me off my feet for another 12 weeks as was the case in March 2015.   The tops of both my feet, though, are very swollen, sore and starting to bruise, and my right knee is a “delightful” shade of dark blue/purple.

My occupational therapist arrived this morning for our regular Friday session and brought her new Deep Oscillation machine which was meant for my hand but became therapy for my feet and knee.  All I can say is WOW!  The effect was immediate.  The swellings have reduced and so has the pain.  I can even wiggle my toes again.

I’ve started taking Arnica tablets to reduce the bruising and swelling, and my nurse is applying a non-steroidal anti-inflammatory cream, called Fastum, which our pharmacist recommended based on her personal experience with it.

I should be up and walking again in a few days.




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Seeing the light

Finally!  The myelin sheath has regrown more than halfway down my right shin and impulses from a nerve stimulator make my right foot twitch!  I cannot describe the joy this gives me. There IS light at the end of this long tunnel I have been in since May 2013.

The therapies I currently receive, i.e. biokinetics and occupational therapy, can shift up a few notches to develop muscle strength now that the muscles are receiving more nerve impulses.

The biokineticist, “Martina”, is keen to experiment on me and I’m a willing participant. Her practice’s rooms are located at one of the Virgin Active gyms and I’ll also be able to use the gym’s hydrotherapy pool as part of my treatment as there is a hoist which can lower me into the water.  I’m looking forward to the day that I will be able to walk up and down the little steps into the pool.

Took another little tumble on Saturday morning because I over-balanced while trying to climb a little step up onto a pavement.  Very little damage done – just a few bruises and a slightly strained ankle which is a bit puffy but not sore.  Was almost immediately surrounded by people from the restaurant who saw me fall and who wanted to help us. The experience didn’t spoil our outing though.  I’ve accepted that falling once in a while is inevitable as I push the boundaries.

Have also managed to walk DOWN the ramps inside and outside our house in the past two weeks.  Knees, quads and glutes are making their comeback!


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An anniversary NOT to be celebrated

The past week has been difficult emotionally.  In three days’ time it will be three years since I developed GBS.

I know that I am lucky to be alive, lucky that I’ve never hit a plateau and that there is still improvement every week, lucky to have loving friends and family.

What is hard to contend with is the fact that my active life – as I knew it – was put on hold and I don’t like the sedentary life I have to contend with on a daily basis.

As I wrote in a previous post, I am not depressed just despondent.  I am afraid of something silly.  I am afraid of the calls and messages I’ll get from people who will want to be happy that I’m still improving after three years, while all I want is to forget that I’ve lost three years and that I’ll never be as strong and active as I was.

So. What is there to do?  Wallowing in self-pity is not the solution.  Embracing the new me is.  I need to be Buddhist in this respect and contemplate the Four Noble Truths.  I am suffering because I am attached to my thoughts about my previous self.  I must look on those memories as “Thank you God. You gave me many active years that I made full use of.”  My new physical situation must be accepted and I must do things that will give me satisfaction and help others.

I am a Christian.  I believe that Buddhism is a philosophy and that its teachings can be appreciated and practiced by everyone irrespective of their religion.

It’s time to work on some of the points in the Eightfold Path: right intention, right effort, right mindfulness, right concentration.  I’ll never have peace of mind unless I progress out of this unfulfilled state.




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Now, now-now, just-now…

I am now retired from the American-owned company I worked for – for 25 years – in South Africa.  Our managing directors were always “foeign service employees”, i.e. they can be any nationality and they spend 18-36 months at one subsidiary company before being relocated to another subsidiary in another country somewhere around the world.

An American-born MD, “Paul”, was lucky enough to spend seven years in South Africa.  Lucky for us because he was a really great person and boss, and lucky for him because he met and married his soul-mate here.

One day, after being in South Africa for about 4 months, Paul asked me how we measured time in South Africa.  He didn’t understand what we meant by now, now-now and just-now.  I laughed and explained the following:

  • Now means anytime in the next 15-30 minutes after we’ve finished what we’re currently busy with.
  • Now-now means in the next 30-60 minutes.
  • Just-now covers the space of about three hours.
  • “Later” means sometime today, even if it has to be done after work hours.

“So,” asked Paul, “what must I say if I want something done immediately?”.  “That’s simple,” I replied.  “Just say you want it done right-now!”.

“Time flies like an arrow; fruit flies like a banana.”
Anthony G. Oettinger

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Is the Zika Virus the next Spanish Flu?

The influenza outbreak in 1918 infected 500 million people worldwide and killed between 50-100 million.  The outbreak did not commence in Spain but that country’s press was the first to go public with the news, the other affected countries having initially censored their press to avoid panic.

The flu quickly became pandemic when soldiers returned home after the end of the First World War in 1918.  No-one was safe as the causative H1N1 virus affected young healthy people too, not just children, the infirm or the aged.  The H1N1 virus was also responsible for the pandemic outbreak of “Swine Flu” in 2009.  It is said that the Spanish Flu killed more people in 24 days than AIDS killed in 24 years!

Infection with the Zika virus (ZIKV) causes a mild illness BUT the side-effects thus far are microcephaly in developing foetuses and Guillain-Barre Syndrome (GBS).  GBS is caused by a cytokine storm response in the human body after an infection, as well as after vaccinations.  With GBS your body’s immune system destroys the myelin sheath covering nerve axons.  I was a very healthy and active person when I developed GBS in 2013, a week after a mild 24-hour bout of gastro-enteritis.  I am still partially paralysed.  Please read my blog for more info on this.

The incidence of GBS is not as rare as the media is saying it is.  There are no statistics for South Africa, but stats for the USA are 1:100,000 and 1:40,000 develop it annually in the UK (1,623 in one year/4.44 people every day).  Even babies can develop GBS. Approximately 5% of people afflicted by GBS will die, 80% will recover fully, and 15% will have lasting disabilities that range from mild to severe.  The added problem is that up to 5% of all those afflicted may relapse at least once in their lifetime.

And here’s the problem if ZIKV spreads to pandemic proportions:

  1. Although some babies with microcephaly will develop normally, others may experience delayed development, seizures and/or mental retardation.
  2. People who develop GBS as a side-effect of ZIKV (incidences may be as low as 1% of people who were infected by ZIKV) may be bread-winners, and any form of short-term or long-term paralysis could be catastrophic for that family.  Also, the recovery rate from severe GBS is proportionate to the ability to access high-care services as well as therapeutic services during recovery, i.e. physiotherapy and occupational therapy.  Surviving GBS in an under-developed country will be difficult.

Imagining 1% can be difficult and it may seem insignificant, but let’s play with the numbers.  Brazil’s population is about 200,000,000.  If 1% are infected by ZIKV (2,000,000) and 1% of those develop GBS (20,000), that amounts to potentially 1,000 deaths and 3,000 disabled people.  Increase the estimate to 5% ZIKV infections – with 1% developing GBS – and the figures rise to 5,000 deaths and 15,000 disabled people.

And you don’t need to be bitten by a mosquito to contract ZIKV.  There is evidence that it can also be transmitted via blood, saliva, urine and semen.  Last Monday, the WHO declared ZIKV a “Public Health Emergency of International Concern”.  Scientists are genetically engineering mosquitoes in an attempt to eradicate the virus, and work is being done to develop an effective vaccine.  A world-wide roll-out of both will take time.

In the meanwhile, everyone travelling to South America needs to take precautions.  Your grandma was right: prevention IS better than cure.  There will be a lot of people in Brazil this year for the Olympic Games.  Don’t let ZIKV spread like the Spanish Flu did.  Don’t bring ZIKV home with you.



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