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!