Joostlike! One Too Many

Tuesday 31 May 2011: 4 years 8 months on … DEUCE

Some three weeks ago the name Joost van der Westhuizen was splashed across the media yet again.

This time is was not because of his rugby deftness or because he had been the Springbok rugby captain, nor his being South Africa’s version (together with his ex-wife Amore Vittone) of Posh and Becks, nor his SuperSport appearances, nor his new range of clothing, nor his trysts and bedroom indiscretions.

Unfortunately, Joost has been diagnosed with, what the media reports as, motor neurone disease (MND). Whilst it is sad that anyone is diagnosed with such an illness, I am pleased that the diagnosis in such a high profile person has suddenly raised so much awareness of these neurological problems.

I have had numerous queries regarding this disease and how it relates to the corticalbasal degeneration (CBD) with which I have been diagnosed.

Whilst I have no medical training, I will try my best to explain with the help of the reading that I have done since I became ill.

Motor neuron(e) diseases are a group of neurological diseases that selectively affect motor neurones, the cells that control voluntary muscle activity including walking, speaking, breathing, swallowing and general movement of the body. 

Forms of MND include amyotrophic lateral sclerosis (ALS), primary lateral sclerosis (PLS), progressive muscular atrophy (PMA) and Bulbar – but do not include spinobulbar muscular atrophy, spinal muscular atrophy, Charcot-Marie-Tooth disease (and many others).

What makes it confusing is that theses diseases are often referred to by different names in different parts of the world and by different medical personnel and agencies. They also follow different courses in different patients.

In the USA, MND is more commonly called amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, after the baseball player.

Readers may be familiar with Morris Schwartz (of the book, movie and play “Tuesdays with Morrie” fame), diagnosed with ALS, and Professor Stephen Hawking, sometimes referred to as having ALS and sometimes MND. My disease, CBD, is also sometimes referred to (correctly or incorrectly) as being a motor neurone disease.

Schwartz was diagnosed in his late sixties and told he had three to five years left to live – he lived for two more. Hawking was diagnosed in his early twenties – also given some few years, but is now 69 years old!

What has become a talking point is “WHAT” causes these diseases and why they appear to be on the increase! Everyone seems to have expert opinion in this regard.

To add fuel to the fire and to the skinder (gossip), this weekend’s press has reported on the use of steroids in South African high schools and rugby in particular. The dramatic headline reads “Steroid scourge rages in school rugby”.

And a further comment on this story by a reader on a newspaper website read as follows:

 “Here is why you must test for steroids:  Ruben Kruger, Andre Venter, Joost van der Westhuizen, Wium Basson, All Springboks in the same team, all seriously ill or dead from nerve related illness. SARU! If it is caused by steroids you must act. If it is caused by the game it must be banned (however much it is part of my soul)

The inference here is that nerve related illness may be caused by rugby and/or the use of steroids. This comment quickly did the rounds on Facebook and was added to by many of the social network’s   “expert” doctors. I also threw in my money’s worth – I have the “nerve thing” but was never a rugby player or a steroids user. If the inference is correct then I have lost out yet again: I could have had the “nerve thing” and big muscles! (Ironically, just on Monday it was suggested to me to request my doctor to prescribe testosterone/steroid injections in order to build up my atrophying muscles brought on by the CBD!)

My curiosity led me to read up on the above-mentioned players, or in modern-day parlance, I “googled” these names, and found the following amongst the players of the 1995 SA Rugby World Cup champions:

Ruben Kruger had a brain tumour, Andre Venter transverse myelitis (a disease of the spinal cord possibly brought on by disorders of the spinal blood vessels), Joost van der Westhuizen MND, Wium Basson liver cancer and Otto Krynauw brain haemorrhage.

Googling steroids, I found that the use of steroids may lead to many health issues, inter alia, cardiovascular and liver problems. So there may be a link … or is there?

 According to my further reading on neurological illnesses, about 90% of cases of MND are “sporadic”, meaning that the patient has no family history of ALS and the case appears to have occurred with no known cause. Genetic factors are suspected to be important in determining an individual’s susceptibility to disease, and there is some weak evidence to suggest that onset may be “triggered” by as yet unknown environmental factors.

The bottom line is that cause of illness is as yet unknown and there is currently no cure. Most cases of MND progress quite quickly and MND is typically fatal within two to five years (although we have seen that Hawking has lived for more than 40 years with the disease).

And this seems to be the pattern with all neurological illnesses – as yet, no known cause and no known cure.

So maybe a call for more research/investigation into the use of steroids is warranted. At the same time, maybe an investigation into school sport is warranted. One of the topics discussed at our recent reunion was the comparison between the size of players 25 years ago and their size today.

I am of the opinion – controversially so – that, whilst there may be no direct correlation between the “nerve thing” and sport, we have definitely lost our minds when it comes to the position that sport and especially rugby takes in our educational system today.

Steroids are used because too many hopes are placed on playing in first teams and on the need for them to win. There are too many teachers who coach and don’t teach, too many hours of school time used to organise, prepare and play, too many kilometres  travelled on tours, too many “social” gatherings, too many nights in hotels, too many meals in restaurants, too many unaccounted for and hard-earned rands spent by sponsors and expected to be paid by parents, too many rands in “retainers”  paid to school boys by franchises and unions – all in the name of rugby, of winning and of the supposed educational spin-offs that all these activities bring.

There is, in my opinion, too much money and time spent on what has become our international professional sporting enterprise. That’s why we have to pay R600 for a ticket to watch a game of rugby! And the process starts in our school system – in a country that can least afford such luxury and has one of the weakest educational systems in the world.

Where does it all lead to? As I write this, the popular unhappiness of dictatorships in Tunisa, Egypt and Libya (and elsewhere) has spread to that fiefdom of FIFA and its absolute monarch, Sepp Blatter. (And to think, it was just a year ago that we all in SA were shouting “Hail Caeser!” – it makes one wonder!)

In many (all?) cases, it’s the economic underpinning of the system that creates the root unhappiness.

Yes, please, investigate steroids, and all the rest. It would also be interesting to investigate just how much money is spent on the research of neurological illnesses vis-a-vis that which is spent on rugby!  

In the meantime, each additional case of neurological illness, is too many – one too many!

The Story

Tuesday 24 May: 4 years 8 months on … DEUCE!

I started blogging in October 2009.

It was a way of communicating my activities and my state of health to my friends and family. The word “blog” comes from the contraction of the two words “web” and “log”. A blog is simply a “web log” of one’s activities – a sort of electronic diary available for all to read.

So my writing of blogs had two goals: one was to be a diary of my last days on this earth; the other to raise awareness about my illness, corticalbasal degeneration (CBD), a form of motor neurone disease and a virtually unknown syndrome when I became ill now four years and eight months ago.

In the beginning, the blogs flowed fast and furiously. My brain’s ability to work with figures was replaced with a new-found ability to write prose. I have written some 160 blogs to date, and they have been read online by more than 22 000 “hits”.

In the last month or so, the writing has not been so easy or so regular. My ability to type has been severely restricted, and I have been making use of voice recognition software to assist me. However, I now find that my cognitive abilities are also declining, and it is not always easy to put into writing what is going round in my head! My ability to get around and to do the so many things that I have written about in the past has also become more restricted.

So, the last few weeks have become even more challenging. However, it is even more important now to stay busy and to keep my mind occupied as much as possible.

That’s easier said than done: my hands are affected and so manual work is difficult; my short-term memory and concentration is affected and so reading and movies are problematic; my ability to multi-task and order is affected, so organising things are not easy. (The Gilbert and Sullivan production of OKLAHOMA last week tested my skills in that regard and I think I have now met my match!) Even my ability to sit has become a problem – the spasms that I get down my left side become more pronounced when I sit for a while.

It has however allowed me more time just to relax and to watch TV – normally CNN or Sky News. It has opened a whole new world for me – and what a world and global village we live in!

I have written before about living in moving times!

Over the last period of time, I have witnessed the earthquakes in New Zealand and Japan and the tsunami in Japan. I know no-one in Japan but I have a sister in New Zealand.

Then there have been the floods, the droughts, the fires and the tornadoes. Just yesterday, we saw the death and devastation in Joplin, Missouri, USA caused by a tornado that is reported to have killed more people than any other before it. Our family was in Joplin in 2001 when we visited the USA, and my American “family” live close by in Cassville and at Table Rock Lake, Missouri.

There has been the Arab Spring – the uprisings in the north of on our own continent. First, there was Tunisia, then Egypt, now Libya and Syria and all the other smaller Middle Eastern countries. There is the whole Israeli / Palestinian challenge that has raised its head once again – and, as I write, the Israeli Prime Minister is addressing the American Congress, in a room that I have visited in the House in Washington DC.

There were the northern hemisphere winter snowstorms and the Ash Cloud this time last year from the Icelandic volcano Eyjafjallajokull that disrupted life around the globe. Just one year later, we have that volcanic ash cloud problem all over again – almost de je vu.

The upheavals of the world remind me of the challenges that we face in our personal lives. They come at regular intervals to us all, and they provide the rungs that raise us higher and the stepping stones that make us stronger.

But, as in our personal lives, we also experience the pleasant things in our world.

Recently, we spent much time watching the Royal Wedding. I was in London in June 1981, just before Charles married Diana. The hype then, as now, was unbelievable. 

Then there was the recent visit of Queen Elizabeth II to Ireland – a country much like our own in that it has had its fair share of problems and challenges. I had the pleasure of visiting Dublin in November last year, and it surprised me that I had visited that City before the Queen (I wondered if she may have ever gone there before – incognito?!)

The history of Ireland is so very similar to that of South Africa. And the peace that they now experience there, ratified in their Good Friday Agreement signed on Good Friday, 10 April 1998, can in part be ascribed to our own lessons learnt that led to the birth of the New South Africa on 27 April 1994. (Our own elections last week were testimony of the peace that we now enjoy.)

I enjoyed tracing the Queen’s steps through Dublin as she visited many of the places that I had the privilege of visiting last year: the Garden of Remembrance, Croke Park, Dublin Castle, the Liffey River, and, of course, the home of “The Black Stuff”, the Guiness Brewhouse! Her steps in the summer were, of course, very different to mine in the heavy snowfalls of last December.

And, I have enjoyed watching the President of the United States, Barack Obama, visiting Ireland (and tasting the Black Stuff) and London. And, indeed, even as he can trace his roots to Ireland, I can trace my roots to Ireland (on my maternal grandmother’s side) and to Wookey Hole, Somerset, England (on my paternal grandfather’s side).

When our family visited Buckingham Palace in 2001, Sean (then 9 years old and clinging to those famous railings that surround the Palace) asked why SHE needed such a large house. Well, tonight as the Queen entertains 171 guests to dinner (with 2000 knives and 5 wine glasses per person!) I can now see why SHE needs it!

Ten years later, our pleasant things: we celebrated Sean’s nineteenth birthday last week; we saw, on Tuesday, the production Oklahoma (where I went to school in 1975) and yesterday, I made an amazing discovery.

The ongoing spasms that I have been getting, especially when seated, appear to come from the fact that the gluts in my left buttock have atrophied. When I sit, I am either affecting the circulation or a nerve. And, if there is no weight on my left bum, then there are no spasms! How best to sort this out will be the challenge of the next week … the story continues.

To The Grey Class of 1986

Monday 16 May 2011: 4 years 8 months on …

Dear Rob and Class of 1986

My first email to you “disappeared” into cyber space last night, so let me try again!

Firstly, Rob, let me congratulate you on the magnificent reunion weekend that you organized. Everything flowed so smoothly and seamlessly, but I know that a lot of hard work and effort went into making it happen. I am sure that everyone enjoyed the various functions that they attended.

Secondly, I would like to thank the class for inviting me to share in your reunion with you. It is very rewarding for a teacher to observe the results of his handiwork and to know that, in part, he has been responsible in shaping their future. You can be justly proud of the contribution, small or large, that you individually have made to your families, your communities, your school, your country and your world. The Class of 1986 has certainly raised the bar to new heights!

Also, a very special word of thanks is extended to you for the shirt that you presented to me at the golf club function on Friday night.

I shall wear that shirt with fond memories of the very special years, 1984 – 1986, that I had the privilege of teaching and getting to know many of you at The Grey.

In 1859, the very first year that classes were taught at the brand new Grey Institute on The Hill, the Governor of the Cape Colony, Sir George Grey, was recalled to London. The Staff and boys of the school wrote to him expressing their regret at his departure and “gratitude for the benefits he had conferred upon them”.

He replied to them as follows:

Gentlemen and Students

Your letter at expressing your regret at my departure is one of the most gratifying which I have received. Every man desires to aid in blessing others, and in doing good; but it is not given to many men to see such early fruits springing from those labours in which they themselves and others have engaged. God has, in the case of the Institution from which you write, given me this pleasure, and has allowed me to hear that, from the Grey Institute, and from amongst yourselves, good and able men have come forth.

If any of you who have done credit to the Institution, require a friend in Europe, remember that you are, in some sort, children of mine, and have a claim upon my sympathy and aid which I shall not overlook.

From your affectionate friend

G. Grey

I am pleased that from the Class of 1986 “good and able men have come forth”. G. Grey, your affectionate friend, whose mortal remains lie in St Paul’s Cathedral in London, must also take great pleasure to see the fruits springing from his labours.

I watched a movie, Dear John, on TV last night. There were many lessons, but one which I recall is the fact that “time comes to an end”.

Our time at The Grey, about which we reminisced so much this weekend, came to an end in 1986, our weekend together came to an end all too quickly, and, indeed, our time on this earth will come to an end.

During that time, life will hand us many different “Dear Johns”. Many of you are aware of my illness. I will most probably not see some of you again.

As a young teacher, just a few years older than yourselves, I taught you mathematics and computer studies, but I don’t think we ever spoke about life.

In some sort, you are also “children of mine”. If I may then, let me give you one last lesson: Let me encourage you to make the most of each and every day. Live for the moment. Live each day as if it were your last, because some day it will be!

 Until we meet again … thank you for the memories.

 Regards

 Ed Lunnon

PERSIST

When we look at successful people we realize that they have not always had it good. They have had times of great hardship and times of exceptional trials and tribulations. We call them ‘successful’ because they made it through the hard times.

Every person has the potential for success. Some recognize it and do nothing about it, some try and give up and some persist until they succeed. Make no mistake, the successful people realize that there was a price to pay for their achievements.

“So long as there is breath in me, that long I will persist. For now I know one of the greatest principles on success; if I persist long enough I will win.” Og Mandino

If we keep believing and keep persisting we will win through! A race is a strategy and if we give up at any point we have no chance of crossing the finishing line. Life is a series of races every day and we need to put on our gear and get going hard though it may be.

We have breath and life and procrastinating and worrying stops us from moving forward. Ray Croc who made McDonalds a worldwide name did not finish school, yet through hard work won through. Behind his desk he had a plaque which stated that “persistence and determination” are omnipotent”.

So today, persist! You have life and breath and don’t give up!

Have a good day today!

(From Mike Lacey-Smith)

Memories are Made of This

Tuesday 10 May 2011: 4 years 8 months on … ADVANTAGE CBD

I have made much about my and our family travels over the years. Before I got married, I was fortunate to travel extensively overseas. Thereafter, it happened less frequently because of logistics and cost. However, as the boys grew up, besides holidays, we also spent a lot of time following them around the country as they became involved in various school activities.

We have been to all four of the old South African provinces to watch school sport and listen to the orchestra – Pretoria, Durban, Pietermaritzburg, Bloemfontein and Cape Town. In the Eastern Cape, over the years, we have frequently visited Queenstown, King Williams Town, East London, Graaff-Reinet, George, Knysna, Grahamstown, Uitenhage and Despatch!

Our travels with the boys have been some of the best memories that I have – besides the sport and the performances, our discussions in the car, the scenery, the history and geography – even the mathematics sometimes – have made all those trips very worthwhile.

We have visited old friends and made new friends around the country, gone sight-seeing, attended shows – Phantom of the Opera in Cape Town (together with the Thomsons, Stapletons and Scholtz’s) comes to mind, gone shopping and seen the country.

I have written a number of blogs about these trips, notably “Heaven is a Place on Earth” and “I was so Glad that I had come”!

“Heaven is a place on Earth” describes our trip to Stellenbosch round about this time last year (2010) for the annual derby day against Paul Roos Gymnasium (incidentally where I did my practical teaching as a student at Stellenbosch University).

The previous year (2009) we had visited Wynberg in Cape Town in May. I had not started writing blogs yet so I have no record of that trip. However, despite my short-term memory leaving me in the lurch, my long-term memory remains almost intact.

I had attempted to organize a bus trip for parents to Cape Town for that long weekend. We were due to stop over in Rawsonville at a University friend, Stanley Louw’s wine farm, stay at the Newlands Sun Hotel, take in a  show, ABBA, at the Artscape Theatre on the Friday night and a Super 14 Rugby match at Newlands on the Saturday (and, of course, watch our sons play against Wynberg.) However, it was just at the time of the economic crunch taking its toll on our South African pockets, and I had to cancel the plans at the last moment because of insufficient numbers.

So we drove instead. We stayed over, as usual with the Kapps in Knysna, and then stayed with the Reelers in Pinelands. After the rugby Saturday, we watched the Stormers play at Newlands, and then discovered a delightful pizza place in Rondebosch. On Sunday, on the way home, we stopped over for lunch at the Rod and Reel in Plettenberg Bay!

Two years before that, May 2007, I had just been diagnosed with CBD in the January and had to make a return visit to Tygerberg Hospital at the time of the Wynberg encounter. I flew down to Cape Town, saw the doctor and very little of the rugby, as I recall spending the Saturday afternoon assisting Dylan Collins (Head Boy 2006) who had eaten a suspect hamburger and was not feeling too well!

Despite the bus trip to Wynberg being cancelled and my illness taking its toll, I had organised two very successful train trips for parents to Grey Bloemfontein in August 2007 and again in August 2009. I called it the Grey-V Train, One and Two!

In 2007 we were almost 250 parents who filled the train. We left Port Elizabeth station 4 hours late (due to a train accident at Addo) – after having emptied the picnic baskets at a party on platform 5! – and encountered the coldest night of the year and snow in the Karoo and the Free State. We arrived late in Bloemfontein and some parents (including us) did not even get to see our sons play!

However, the memories and the stories of that trip will remain legendary. So much so, that when 2009 came round, the demand for another train was there. Unfortunately, due to a number of factors, notably the SA Railways not being able to guarantee a train, it was a last-minute rush and we did not have as many passengers as the previous trip. This time we only arrived an hour late and managed to keep warm on the train (but the Heavens opened in Bloem and it poured with rain!)

And so, all these trips have very special memories and I could highlight many over the past 27 years since I became associated with Grey, first as a teacher and then as a parent.

Last weekend, it was time for the Wynberg trip again. With Sean out of school and Phillip not playing rugby temporarily this term, there was really no reason to go to Cape Town, except to make an excuse to go! And I don’t really have to look too far to find such an excuse to go home to the Western Cape!

Besides Grey rugby, the Stormers were also playing the Crusaders at Newlands, so we looked at all our options! But, much as we tried, nothing worked – I doubted my ability to sit in the car for eight hours, Sean was writing a test, there were no flights available, the Newlands seats were sold out, the price of petrol has just increased YET again, I didn’t want to drive in the dark, etc … so, in the end, we made the difficult, but sensible, decision to stay at home.

So we were at home on Sunday afternoon when we got the news of the tragic death of grade 8 pupil, Stefan Ehlers, and his mother, Theresa, in an accident on the way back from Cape Town when their car hit a kudu near Willowmore. The father, Rian, was admitted to hospital but escaped serious injury and was discharged Monday. Our sincerest condolences go to their family at this sad time.

My condolences also go to the family of Robin Small, an ex-colleague of mine at Grey who also passed away this week after having battled cancer for some time. His memorial service took place at Grey yesterday.

We cannot predict the future

We cannot change the past

We have just the present moment

We must treat it as our last 

This week, hundreds of Old Greys will converge on Port Elizabeth for their annual reunion.  Since last year’s gathering, we have lost a number of our family, friends, acquaintances and colleagues. We remember all of them for having enriched our lives along the way.

So my message to you is, if you are having doubts about attending this weekend (or, for that matter, doing whatever you have been putting off or have been uncertain about), make the decision now to join in the reminiscing and the fun. Live for the moment.

We have just the present moment – We must treat it as our last.

 

Conversations Down Under (5): My response

Dear Alison

Thanks so much for your email. I always look forward to getting news from you and to “comparing notes”!

However, my writing is also slowing down considerably. It’s not just the physical act of typing, but also just remembering what used to be easy functions, such as capitalizing letters, copying etc etc. My brain seems to forget momentarily how to do these things. I spend more time fixing spelling, putting in words that I have omitted and making corrections than I do putting the original note together! It all used to be so easy and especially when I was able to do it with all ten fingers! I am now down to about four fingers that work!

I also lose track of what I want to say and find that I don’t always finish off my thoughts. So I keep my notes for a while and fill in the gaps later!

My eyes are also a problem, and I seem to be losing my depth of perdsepion (that was supposed to be perception!). I read that your two eyes see the picture differently because they aren’t placed in the same spot. There are brain cells that then take the two pictures and make them look like one – almost like focusing the two halves of a pair of binoculars in order to get one clear picture. In our case, withCBD, those cells that do the focusing have been affected by the disease. That’s why we have sight problems.

Noise, even just normal sounds, drive me insane sometimes – whether it is just the wind, the vacuum cleaner, general conversation or really loud noises like dogs barking, shouting etc. I prefer to stay away from large groups of people now.

My body is not aching but I have experienced some pain lately, which is a new thing. However, I do get extremely weary and have to sleep for longer and longer periods. I also get out of breath and have problems coughing and swallowing.

 

The most irritating things right now are the spasms that I get down my left leg. My left bum is numb and I can’t find a place to be comfortable – sitting, lying down are problems and sometimes it is just better to stand. I have also become aware once or twice of the spasms in my right leg, so I think it has now crossed the divide. (Both my hands are affected already.)

My short term memory becomes increasingly affected and I have started doing strange things – like shopping and not knowing where I have left the goods, or standing in a queue at an ATM and then not knowing how to operate the machine! Life used to be so simple!!!

I have passed your message on to Lance – thank you very much. The radio programme keeps me going, but I must admit that sometimes I feel like it’s time to stop. However, there are so many people who listen and I don’t want to disappoint them. It also gives me purpose each week and something to look forward to.

 The last month especially has been very difficult for me, both physically and emotionally. But I am determined to pick up the pieces and start again.

In two weeks time, the musical Oklahoma is being produced here in Port Elizabeth and the proceeds from the premiere will be donated into my children’s’ trust fund. I worry about the future costs associated with my medical situation and of course their education. I studied inOklahoma(“Red Man”), and was made an honorary citizen of the State, so the show has a very deep personal meaning for me. One of the songs from the show, OKLAHOMA OK, is the state song, so we used to sing it often at school and sporting occasions!

Other than that, I have to slow down considerably. I find it difficult passing my days and not being able to do something constructive. I have also stopped driving (but have cheated once or twice!!) and that has been very difficult for me. It takes away your independence.

Give my regards to John. I have forgotten in which city you live!!

 I look forward to your next email. (I was just thinking I should have written this one without correcting the errors – and you could have guessed what I was trying to say! Thank God for word processors and spell checkers – imagine trying to do this on an Olivetti golfball typewriter!)

 Love and best wishes. Live strong!

 Kind Regards
 
Ed

Conversations Down Under (5)

E-Mail Conversations with Alison Bevon – CBD Survivor South Australia

27 April 2011 – Freedom Day

Dear Ed,
 
I am sorry I  haven’t emailed you for a while, but my health hasn’t been the best and sitting down and typing was very hard and I admire you so much to be able to do it week after week and sometimes more.   I have been having trouble with my eyes, they don’t seem to able to cope with daily life, such as reading, writing, watching television or just watching general movement of people.  I have to wear an eye mask most of the day.
 
My ears are not coping with any noise.  I find it better wearing earplugs, to dull the noise. So listening to the radio, which was the only thing I was enjoying, is now gone.  My doctor said my brain wasn’t coping with all the stimulation of the noise and sights.  So now I have to try and block most things out. 
 
My body aches continually, and I get so out of breath and as much as I want to keep denying these things are happening, they are gradually wearing me down.   A couple of weeks ago I couldn’t keep my eyes open at all.  So now with wearing my eye mask it has allowed me to keep my eyes open a few hours a day, and now this is all I can manage to type, because the weariness just overcomes me.
  
Anyway keep up the good work that you do for as long as you can.  My husband reads me your postings, we look forward to them and your radio segments and please convey our condolences to Lance on the passing of his father.
 
All for now
 
Alison