Joost’s Disease

©2012 Edward C. Lunnon

Tuesday 11 December 2012: 6 years 3 months on …

Physical:  Advantage CBD / Mental:  Advantage CBD

Joost van der Westhuizen, ex-Springbok scrumhalf and captain, appeared on the TV programme Carte Blanche again this past Sunday. He has MND – Motor neurone Disease and has appeared on TV a few times and often in the print media since his diagnosis at the beginning of last year.

In the United States MND is often called Lou Gehric’s disease – after a famous baseball player who contracted the disease. In South Africa now, people often refer to Joost’s Disease! I repeatedly get asked whether I have what Joost has!

Thank God for Joost!

Because of his celebrity status he has helped to raise the status and awareness of MND and other neurological illnesses.

But his situation should also raise a number of other issues and many questions.

For every Joost out there, there are hundreds of other South Africans with similar neurological illnesses who not only battle the disease but also need the support system and funds to deal with their battle.

How best can we help those people?

By law, medical aids in this country have to cover certain illnesses. These are referred to as PMB’s – prescribed minimum benefits. A certain number of diseases/conditions (such as cancer, HIV/AIDS, TB etc.) are defined as PMB’s and have to be covered for certain treatment by a medical aid.

Neurological illnesses (other than Parkinson ’s disease) are not classified as PMB’s which means that all treatment required for such illnesses, such as medication, physiotherapy, speech therapy, wheelchairs and other devices, home care, adaptation of homes, etc are not covered by medical aid other than payments made out of a general medical savings account should there be an available balance. This places an unbelievable financial burden on the patient and family.

How best can we be lobbying for the lawmakers to include neurological illnesses as PMB’s?

Joost has a foundation, J9, which is raising funds for research.

Where is this research being carried out and what research is being done?

How best can we be assisting in order to make this research beneficial to all patients?

How best can we be lobbying government to assist in assisting people with neurological problems?

Joostlike! The questions don’t stop … and the answers don’t come!

Just Another Two Weeks in the Life of ED

©2011 Edward C. Lunnon

Monday 28 November 2011: 5 years 2 months on … Deuce

I haven’t written a blog for a few weeks now. It’s not because I have been too ill; it’s simply that I have been too busy!

And that being busy during a time that I really didn’t have anything planned. I had said to Lance on our radio discussion that I was going to relax. I was going to take it easy, catch up on my writing, get my admin sorted out and rest a while!

Well, let me try and document the last few (restful) weeks:

Friday 11 November

I missed the Remembrance Day sevice at Grey, but attended my first hydrotherapy at noon with Christelle Smit (biokineticist) in Newton Park. She was recommended to me by Paul Woolf, who was so instrumental in assisting Belinda Walton in her recovery after her dreadful car accident.

Monday 14 November

At 11h30 I see Suna Kennedy who visits me weekly to massage my hands, arms, feet and legs. At 13h30 it’s off to swim with Christelle.

Tuesday 15 November

At 11h00 I have my therapy with Christelle. Then invite to lunch with ex-pupil and psychologist Konrad Van Staden at Cape Town Fish Market at 13h00. Over Tuesday’s half-price sushi we discuss the ongoing spasms that are increasing, the pain in my left calf muscle and the discomfort that I am experiencing. Konrad has been discussing my condition with medical colleagues and they have some ideas with which they want to experiment.

He immediately makes an appointment with Dr Fanie Smit for 14h00 in the medical centre at King’s Court. Fanie recommends that we start a course of cortisone (read my blog Woke up and Gone to Heaven when I had cortisone injections last year to treat the gout attack that I experienced!)

I then rush off for my haircut @ 15h00 with Jeannine at Hair by André in 4^th Avenue Newton Park. Jeannine has kindly been cutting my hair and trimming my beard for the last few months now, since it became more difficult for me to hold the shaver and pair of trimming scissors!

I then go to Dischem to collect the new experimental medication:

• Be-Tab Prednisone 5 (40) 8x day for 5 days with breakfast (Wed – Sun)
• Norflex Co (24) 1 -2 tabs 3x day as needed (Relieves muscular pain) [orphenadrine 35mg /paracetamol 450mg S2]

In the evening we went to see the Gilbert and Sullivan production of “Fiela’s Child”. I thoroughly enjoyed this translation and musical production of the original Dalene Mathee’s Fiela se Kind. (I had previously read the book and seen the movie.)

 The talent in Port Elizabeth never ceases to amaze me! Donna Africa is superb in the rôle of Fiela! And it’s a fundraiser in aid of Gaby van Rooyen’s Trust Fund – Gaby has muscular dystrophy and we have discussed her on air and she has met me at Bluewaters café.

Wednesday 16 November

I commence new medication with breakfast.

Then I head off to AlgoaFM studio at the Boardwalk for ED is in wED at 10h30. Veanne Falco and Loines Jenkerson kindly come to fetch me and after the show we have coffee together, kindly supplied by Bluewaters Café at Hobie Beach. We are also joined by Charles Pautz … and proceed to wax lyrical about the new I-Pads …

My therapy is cancelled today (I can’t remember why!), but in between everything, I am in discussion with the Wrights and the Parke’s in Graaff-Reinet to arrange my lift there for the weekend.

Rose Wright decides to come shopping in Port Elizabeth and drives down in the afternoon arriving at 17h30. She will stay over, go shopping in the morning and I will return to Graafies with her on Thursday afternoon.

Thursday 17 November

Rose goes off shopping. At 9h30, I have my weekly visit from Sister Gill from the Hospice, then Nadine arrives at 10h00 to help with my admin, followed by Isaac at noon for our weekly chat and then a rushed pack for the weekend. At two pm, I rush off for a double dose of therapy and swimming with Christelle until 15h00.

At 15h30 we leave for Graaff-Reinet, arriving there about 18h00. Gordon has called to tell us to meet him at the Graaff-Reinet Club for drinks, and then it’s to their home, supper and sleep!

Friday 18 November

Well, I’m here to talk so I had better prepare some speeches. After breakfast, I spend the rest of the day preparing and trying to be fancy using my I-Pad. I think getting used to the I-Pad took longer than putting my thoughts on paper – I mean I-Pad! But so we move into a paperless society.

Margie Parkes collects me at seven pm to attend the year end function of the GR and District Cancer Association. It’s billed as a Survivors’ Dinner and is attended by about 150 people in the Anglican Church Hall (only because the Methodists don’t allow alcohol!)

It is very humbling for me to speak to people who face the challenge of cancer (and those who have survived!) It is also awesome to meet so many people who “know” me because of listening to our programme. It never ceases to amaze me how popular the show has become.

Besides strangers there are also friends that I have met over the years visiting Aberdeen, Graaff-Reinet and Doringdraai. The Kroons, the Murrays, the Watermeyers  …  I wish I could remember all the names …  as my memory regresses, I will have to jot it all down in my I-Pad … I wish I remembered to do that at the time!

After a Welcome Speech by Margie, and Grace, we commenced with the starter. Then, I was introduced by “Aunty” Jean-Margaret Watermeyer (Colleen Ogilvie’s Mom) from Aberdeen.  I have known them since 1985 when I first started teaching at Grey with Dickie Ogilvie (himself a cancer-survivor.) Colleen’s brother Alec died from cancer in 1987 and that prompted their move to the Karoo and to farming, and our long association with Doringdraai  and the Camdeboo and the Great Karoo. (John Watermeyer was MC when we got married in 1990 and Dickie was one of my bestmen.)

I spoke about the positives of facing life’s challenges – The Gift that Adversity brings to us.

Then we had the main course and dessert, with some light singing entertainment in between. It was a great evening, celebrating the human survival spirit.

Afterwards, I went with Aunty Jean to Helen and Graham Harris’s town house. Uncle John was there too, and we visited a while until Graham took me back to the Wrights. There we were joined by William Pringle (the new Union High headmaster) and Gordon for a late-night single malt!

Saturday 19 November

At 9h00 Graham came to fetch me. I had a breakfast appointment to address the Men’s Club at the St James Anglican Church Breakfast Group. About twenty local gentlemen arrive and before breakfast I give them a slightly adapted version of last night’s speech. Question time delivers a large number of questions ranging from the illness to religion, faith and Christianity. I thoroughly enjoyed the quantity and quality of the questions asked. And we had an excellent breakfast!

Then back home. I was quite tired and had a short nap.  Afterwards, I walked to town for some exercise, looked at some of the historical buildings (GR, the fourth oldest town in SA, has the most historical buildings left of any town in SA.), chatted at Brian Bands to some ardent radio listeners and at The Spur to Andy Cherrington, my ex-neighbour from Port Elizabeth who has recently bought the Spur Steakhouse in Graaff-Reinet and moved there.

After a decent afternoon nap, we drove to the National Park and the Valley of Desolation, just outside the town, to have sundowners from the vantage point at the top of the Valley. What a magnificent sight to see the sun setting over the plains and leaving its coloured canvas over the Karoo and the Camdeboo mountains. The park closes at 20h00 and after our wines and cheeses, we barely made it out on time.

Then onto the Union – the entertainment facility at the High School where the New Bethesda Cricket Club now has its home ground. They had played Willowmore in the afternoon and were finishing the day off with a good old South African braai ( and a few beers!)

Sunday 20 November

Sunday was a lazy day – breakfast, lunch with William Pringle joining us, watching cricket (SA vs Australia with Aus winning!)

I fell asleep in the LazyBoy Recliner and woke up to find myself the only person left in the lounge. Then off to Tandjiesview to spend the night on the Harris’s farm, some 40km outside the town.

 

Monday 21 November

I took a walk on the farm whilst Graham was attending to some of the daily farming chores. After lunch, we headed back to town, and then returned to the Wrights for Monday evening.  (Cancelled swim time for today and Tuesday!)

Tuesday 22 November

Back to Port Elizabeth on Tuesday at 13h00 in order to attend a fracking meeting at the NMMU at 17h00. It was the first time that Shell Oil, Environmentalists, Geology Professor and Karoo Action Group shared a public platform under the chairmanship of University Deputy Vice Chancellor, Piet Naude, who studied with me at Stellenbosch University. Unfortunately, government did not pitch up and were conspicuous by their absence.

Overall, the general feeling (except that of Shell) was that a moratorium on fracking should be extended for at least another three years until a proper investigation under international watch-dog eyes could be concluded.

Wednesday 23 November

Loynes came to fetch me for ED is in wED. Then coffee with him and Kobus at Bluewaters café, Doctor Fanie at noon, more cortisone from the pharmacy, coffee with Konrad at 13h30, swim at 14h30 and drinks with Kyle, my financial advisor at 16h00!

Thursday 24 November

Back on to the cortisone at breakfast, Nurse Gill at 10h00, Nadine at 11h00, massage at 11h30 and then the  Parkinsons Support Group Christmas Dinner at QDotPharma (ex Paraexel) Head Office.

What a joy to see the humour, fun and enthusiasm in this group of people who battle the ravages of Parkinsons Disease!

Friday 25 November

Quiet morning at last and time to just sit and relax! But not for long, as it is swim time at 13h30!

Saturday 26 November

We attend Claire Williams’s retirement breakfast at Grey Junior. She is leaving after some thirty odd years of teaching there! (She is the fourth in a row of long serving teachers, after Pat Clarke, Jill Bromiley, and Charles Pautz – collectively some 150 years of teaching? – to retire!)

Then back to Graaff-Reinet! Pera and I left at 16h00 and drove as far as Tandjiesview, where we braaied with Graham and Helen in the evening and slept over.

Sunday 27 November

At 09h30 we left for Aberdeen, a drive of some 1hour, in order to attend, with 80 others, Jean Watermeyer’s 80^th birthday luncheon at the Aberdeen Club. It was good seeing the Ogilvie clan and all the rest again. We left at 15h30 for Port Elizabeth and arrived home at around 18h00 (with Pera showing signs of tiredness and me having to drive from Jansenville all the way home!)

Monday 28 November

My internet is down – glory be … how did we manage in the past. Eventually with the help of MWEB we get that sorted out. Then swimtime at 13h30! And then I watched Joost van der Westhuizen’s Benefit Dinner on TV. He has MND (ALS) and they managed to raise in excess of R1 million for his Foundation.

Tuesday 29 November

Phil and I do some electrical work in the kitchen, then Soena at 11h00 for massage and Christelle for massage at 12h30 – double dose today! And I need to write a blog, so that takes up the rest of the afternoon (this blog incomplete as it may be!)

 

And how do I feel in all of this, bearing in mind the experimental cortisone?

Other than waking up with limbs that feel pretty normal for a change, I’m feeling pretty grotty, struggling to walk on a weak left leg, headache, sore joints, and generally just mis!

We can still try the other options … quinine, intermuscular injections, botox … let’s see how this goes …!

(And with grateful thanks to the team of people who still keep me moving every day … )

 

 

 

Life’s Not All Black

Monday 22 August 2011: 4 years 11 months on … Advantage ED

Friday night had been another late one!

Saturday morning found me feeling a bit fragile, but there’s nothing a hot shower and a hot cup of coffee can’t do … and fifteen Carbolev, Lyrica and some other tablets – my daily supply to keep me moving!

Last year’s FIFA World Cup slogan was “You can feel it in the Air!” With today’s Tri-Nations rugby international between SA and NZ taking place at the Nelson Mandela Bay Stadium, once again you could feel it in the air. Wherever you went, there was a feeling of excitement and expectation.

I decided not to join the others at Old Grey Club for pre-game drinks. That may have been dangerous on top of all the medication. And I didn’t want to end up in a state which I saw on a poster later on: “If found passed out, wake me for the 7’s!” (taking place in Port Elizabeth in December this year!).

 

So, I got dressed in my green and gold Springbok supporter’s shirt and SA Zuma scarf and lazed around until it was time for Noelene Jorgensen to pick me up at two. Elsewhere, in Ryan Street – a normally quiet crescent where we live, people were arriving and leaving: a buzz of activity in green and gold outfits all headed for the Stadium.

Driving through North End and around the North End Lake, the excitement continued to increase, as did the numbers of people, the music volume and the noise levels. Wall-to-wall supporters – a few in the characteristic black and white colours of the All Blacks, but predominantly green and gold of the Bokke.

We had a reserved parking bay in the precinct of the stadium, so it was a matter of minutes before we were sitting in the Keypak suite up on the fourth floor.  It was two thirty – two and a half hours to kick-off and the stadium was still relatively empty. The SA Schools team was playing the French under 19 team. My eyes were on the crowd more than the rugby game.

The hospitality and company in the suite was excellent. Eats, drinks, snacks, chats, singing, music, the teams warming up … and the stadium became fuller and fuller, until just before five it was filled to capacity – 45 000 screaming fans.

And then the moment arrived – the teams came out of the tunnel and took up their places for the National Anthems. The atmosphere was electrifying.

Goose bump stuff and maybe just a tear.

“God defend our free land. God defend New Zealand.”

“Let us live and die for Freedom in South Africa our Land.”

Then … The Haka … drowned out by the crowd singing Shosholoza!

These were moments that were etched in my memory, moments I will not forget.

Eighty minutes of hard, hard rugby and the rest is hard fact and history.

At seven pm, the huge electronic scoreboards told the tale: South Africa 18 New Zealand 5.

But across the land (and across the globe) the stories continued in the streets, the marquees, the pubs, the restaurants, the taverns and the homes into the wee hours of the morning and, indeed, into Sunday, Monday and … as long as rugby lives and death do us part!

We celebrated the win in the suite until about nine. Noelene dropped me off at home and I was planning to go straight to bed. Until Sean BBM’d me from the Club – “come have a drink with us, Dad J”

And, the rubber arm was twisted yet again! Father and Son celebrated our win together – priceless moments!

It wasn’t until one o’clock on Sunday morning that we got home.

 Yes, Life’s not All Black. There’s a lot of fertile green and a pot of gold out there. We need to continue to chase it and to defend it when we find it and hold onto it.

When it comes to Life, it’s a matter of

Pause, crouch, touch, engage!

 

Not Only Celebrities Suffer … from news24

 

By: Vicky   2011-07-29 16:30

I read a news article about how it has been confirmed by a world renowned neurologist, Dr Pioro who is an expert in motor neuron diseases, that Joost van der Westhuizen has amyotrophic lateral sclerosis and I felt the need to say something about, not necessarily about his diagnosis but about medical things in general.
 
First and foremost I’d like to point out that this Cleveland Clinic that Joost and his neurologist Dr Jody Pearl went to has approximately 200 neurologists. According to Professor Roland Eastman, President of the Neurology Association of South Africa (NASA), there are only about 120 neurologists in the whole of South Africa which means that this clinic has more neurologists than our whole country. Now most of these neurologists here are in private practice and the only neurologists in public hospitals are those that have a connection to a medical school. In Gauteng that means that only three public hospitals have neurologists.

Now I did a quick doctor search on the three biggest private hospital groups in South Africa; Netcare, Medi-Clinic and Life, and between the three of them they have about 90 neurologists. That leaves about 30 neurologists in public practice. Now think about this as well, only approximately 30% of South Africans have medical aid, so now, what about the rest of the population?
 
If we delve a bit further into some stats, there are approximately 250 000 people in this country who have epilepsy (this is most probably only based in urban areas so this number is most probably quite higher but let’s just work with this) and they should be treated by a neurologist. Now if this is true, that means that 30 neurologists need to treat 175 000 people with epilepsy. Since you can only get a prescription for six months, you would need to see the neurologist twice a year. This means that these neurologists have 350 000 appointments just for people with epilepsy a year.

According to my experience, if the doctor is going to ask questions and what not, an appointment should last around 20 minutes. This means that each of these doctors should spend almost 3 900 hours a year with these patients and if you work on a 60 hour work week and no holidays, they only have 3 120 hours to treat these patients and then let’s not forget the others with different neurological conditions which also need to be squeezed in somewhere. I raise my hands in defeat.

How is it physically possible? Technically, your GP should not be treating you for epilepsy, but that is one of the only explanations as to how this situation is under “control”. It’s that or these people that don’t have medical aid aren’t getting treatment or the neurologists are being reckless and are just writing out prescriptions without doing any form of follow up. And I’m sure that this problem is not just in the neurology speciality, it must be across the board.

I’ve said this numerous times to people that I know and I’m pretty sure that I’m going to say it many, many more times. This is going to sound like I’m a bit heartless but please don’t take this in the wrong way. People are only sparing a thought for Joost because he is a public figure, what about all the other people with this disease? Should they just be ignored because they’re “nobodies”? I can’t find any South African stats, but in the US, 5 000 people are diagnosed with amyotrophic lateral sclerosis every year.

There hasn’t been a link to anything yet with which groups are more likely to get the disease, except that men are more susceptible. So if we had to work with this number and the fact that there are approximately 311 million people in the US, based on that ratio, it means that approximately 800 people in South Africa are diagnosed with this each year. I know it’s not an entirely accurate way to determine the numbers but I’m working with what I’ve got here. So what about the other 799 people? Don’t they just get a second of other people’s thoughts?

I know I am fighting a battle that I will never, ever win. I mean, it’s impossible for people to give a thought to all those who suffer from some sort of disease and your eyes are only opened to these type of things if you personally know someone who suffers from some sort of disease but I feel so strongly that people just need to wake up and just take a minute to sit back and think about all those that are in some sort of suffering at the moment, whether it be something life threatening or just something that you have which you can control but limits your lifestyle in some way or another.
 
Just thinking about what I’ve typed in the paragraph above makes me want to laugh at myself. Like, what am I trying to achieve with this? It’s ridiculous actually but I just really feel that this needs to be put out there. Even though we can’t pinpoint everyone who has some sort of disease, we can at least spend a second to also think of them like we do when we hear a celebrity has been diagnosed with something.

Disclaimer: All articles and letters published on MyNews24 have been independently written by members of News24’s community. The views of users published on News24 are therefore their own and do not necessarily represent the views of News24. News24 editors also reserve the right to edit or delete any and all comments received.

 

Motor Neuron(e) Disease

Thursday 30 June 2011: 4 years 9 months on …

Since it was reported that ex-Springbok rugby player, Joost van der Westhuizen, has been diagnosed with “probably” motor neurone disease, I have received numerous queries regarding the illness.

Here are some interesting points gleaned from WIKIPEDIA: 

“The motor neurone diseases (or motor neuron diseases) (MND) are a group of neurological disorders that selectively affect motor neurones, the cells that control voluntary muscle activity including speaking, walking, breathing, swallowing and general movement of the body.

Terminology

MND refers to a group of diseases that affect motor neurones. In the United States, MND is more commonly called amyotrophic lateral sclerosis (ALS), or Lou Gehrig‘s disease, after the baseball player.

Signs and symptoms

Symptoms usually present themselves between the ages of 50-70, and include progressive weakness, muscle wasting, and muscle fasciculations, spasticity or stiffness in the arms and legs, and overactive tendon reflexes. Patients may present with symptoms as diverse as a dragging foot, unilateral muscle wasting in the hands, or slurred speech.

Diagnosis

The diagnosis of MND is a clinical one, established by a neurologist on the basis of history and neurological examination. There is no diagnostic test for MND. Although an individual’s progression may sometimes “plateau”, it will not improve.

Treatment

Currently there is no cure for ALS.

The lack of effective medications to slow the progression of ALS does not mean that patients with ALS cannot be medically cared for. Instead, treatment of patients with ALS focuses on the relief of symptoms associated with the disease. This involves a variety of health professionals including neurologists, speech-language pathologists, physical therapists, occupational therapists, dieticians, respiratory therapists, social workers, palliative care specialists, specialist nurses and psychologists.

Prognosis

Most cases of MND progress quite quickly, with noticeable decline occurring over the course of months.

MND is typically fatal within 2–5 years. Around 50% die within 14 months of diagnosis. The remaining 50% will not necessarily die within the next 14 months as the distribution is significantly skewed.

Professor Stephen Hawking is a well-known example of a person with MND, and has lived for nearly 50 years with the disease. (Morris Schwartz, of “Tuesdays with Morrie” fame,  also had MND (ALS).)

Mortality normally results when control of the diaphragm is impaired and the ability to breathe is lost.”

Live AlgoaFM Broadcast: Wed 1 June 2011

If you missed this broadcast, you can listen to it now.

Click here:

https://edlunnon.wordpress.com/2011/02/26/ed-is-in-wed-live-algoafm-broadcasts/

OR:

Go to www.edlunnon.co.za/content/18 and click on the link there.

Enjoy!

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!