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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Still fighting for independence

So here’s where I am after two years at home, from my starting point of only being able to sit upright for one hour and not being able to stand or lift my arms from the bed:

  1. Hands and arms mobile, range improving, and finger-tip grasp a little bit stronger. Not strong enough to hold a pen to write with, but I can hold a pen.
  2. Learning to “squat”. Can bend both knees simultaneously for about a 5cm bend while holding on to something. Yes, I did say “squat”. Rome wasn’t built, etc.
  3. Can walk up a short shallow ramp and a short steep ramp with my rollator, but need to rest my legs before tackling the 2nd ramp.

I’m grateful for the progress. Spare a thought for those people with MND and MS who are losing their strength while I regain mine.

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The Unreasonable Demand

“I’ll listen to your unreasonable demands if you’ll consider my unacceptable offer.” – Ashleigh Brilliant.

There are exactly 6 months left to the end of the 2-3 years period I was given as the (one and only) benchmark for my recovery from Guillain-Barre Syndrome, and we now have to accept that I am one of the 15% who do not make a full recovery in the 3-year period. This is unacceptable to me and I feel sad, disappointed and angry. Anger being the strongest emotion.

This isn’t how I’d planned to experience my last few working years until retirement. As someone once said: Life happens while we’re making plans.  So. What to do? Giving up is unacceptable. Disappointing my family is unacceptable. I am channeling my anger into pushing myself to achieve the best recovery possible, both during the next six months and the years thereafter.

But I have to learn to control the push so that I don’t over-exert my muscles and do more harm than good. I have pushed my body too far twice and both episodes set my recovery back, the first episode being the worst as I fell onto my knees while trying to turn a corner, which caused one avulsion fracture on each tibia. That set me back 3 months and, after the fractures healed, I was too afraid to walk on dry land for another four weeks even though I could walk in a hydrotherapy pool. I have to temper my temper.

Maybe I’ll never climb Cathedral Peak or hike to Machu Picchu. There are other things to do. Maybe it’ll take another 12 months before I can drive a stick-shift again and go back to work (if there is a position for me, of course). Time will tell.

And that’s the thing with GBS. Time. I takes time – and dogged perseverance – to recover from a severe case. The higher the level of paralysis + the longer the ventilation period + the slower the improvement = a longer recovery time.

You have to persevere with exercising EVEN IF NOTHING SEEMS TO BE HAPPENING! It will eventually pay off as I have found. I lay in bed for months in ICU, sending messages from my brain to all parts of my quadriplegic body four times a day, willing the muscles to move. After three months I was able to start rolling my shoulders backwards and forwards. That’s when I started believing that I was recovering.

Even with my current weak grasp, I started and completed a 100-piece jigsaw puzzle yesterday. It took 2,5 hours but the sense of achievement is great. My next task is decoupage – someone will have to cut out the pictures but I should be able to do the rest myself.

Life has made it’s unreasonable demand and it’s unacceptable offer. Only I am she boss of me!

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Surprise Parties

It was my 60th birthday three weeks ago and I didn’t want a party.  Not because I’m against parties, but I didn’t want the planning and self-inflicted fuss that go with them. Recovering, as I am, from Guillain-Barre Syndrome – and being an impatient perfectionist – it’s very difficult for me to give instructions to others and expect them to do things just-so.  For example, for dinner parties the table settings must be lined up and equally spaced; glasses need to be placed perfectly; plates with patterns have to be the right way around; food served exactly the same on each plate; food cooked perfectly.  Does it bother me that no-one ever noticed my attention to detail?  Not in the slightest.  It just made me happy and that was enough for me.  I’m a pain in my own neck – I don’t inflict my madness on others, and I don’t expect them to be as mad as me.

Back to my birthday…

Two friends arranged TWO celebrations – a dinner on my birthday at home that they fully catered and a surprise party two days later at a restaurant – AND I ended up having SIX birthday cakes!  Yes, six: one went into the freezer, three were donated, and two were eaten.  I received six bouquets, two plants, sparking wine, and gifts that are all so special to me because they were chosen with my personal choice in mind.  All I had to do at the celebrations was to be there and soak up the love around me.   I am extremely lucky to have friends and family who love me so much.

To get me to the restaurant, my husband cooked up a story about meeting a customer for a casual lunch and he said that the customer had invited me too.  It was a Saturday so I expected to see his wife too.  Being the day that South Africa was to play Scotland in the Rugby World Cup, I had put on my Springbok supporters shirt in the morning.  The only change I made before leaving the house was to put on sandals and make-up.  As my husband wheeled me towards at the venue, I scanned the outdoor tables for our host.  I didn’t see him but did see another friend, Henry.  Instantly putting this down to coincidence, I carried on looking and was just about to say to my husband that we must be early when my eyes went back to Henry and my brain took in the long table under umbrellas, lots of balloons and the faces of my friends!

The penny finally dropped – this was a surprise party for me, my first one ever, and it was great!  The food was excellent, and happy conversation bounced around.  I had two delicious Mojitos and didn’t have to worry about driving home.  This is a benefit of being in a wheelchair 😆.   I was also not the only person there wearing a supporter’s shirt and the party wrapped up at about 4pm so that everyone could get home before the game started.  In hindsight, ours must have been a very noisy table and I hope we didn’t spoil the afternoon for other patrons.

I’m very happy to say that my ability to walk is still steadily improving and I managed to walk up two ramps inside our house on Thursday, and one ramp outside.  These are steep ramps, each being the equivalent of two steps high.  Progress up the ramps, with my rollator, was very slow and strenuous but I managed all three.  That my muscles complained severely the next day was to be expected and my OT has cautioned me to rather focus on one ramp a day for a week, two ramps the next week, etc.  I’m limited to going up the ramps as the muscles aren’t strong enough for downhills YET, and steps – up or down – are not on the cards YET.

So, I reached a milestone birthday this month and took the next step to moving around without help.  And the Springboks beat Scotland.

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