RIP Joost van der Westhuizen 2017

©2017 Edward C Lunnon | ill 10 years 5 months | Advantage CBD

Today, we had one of our infrequent MND support group meetings at the PE St FranciS Hospice.

And, I am angry!

The land, indeed the world, is awash with tributes pouring in for the late Joost van der Westhuizen.(if the media is to be believed!) And rightly so!

Don’t get me wrong. Death is so final, so permanent, and no one, except those nearest and dearest, experience the loss and the sadness so intimately and so emotionally. We all experience it at some time or another, but never all at the same time. Don’t tell me you know what I feel, or how I feel, or I am so sorry about your loss , we share in your grief …  A few days later, all is over and forgotten and the closest are left filling the emotional gaps.

So, as much as we can, we, too, extend our sympathies and condolences to Joost’s family and friends. We say we are sorry. We know how it feels to lose loved-ones to death.

But why does it take a Joost to get ill or die? Why an Ed or a Bongani or a Dave or a Mandy .. Before he became ill, I did not see the same enthusiasm about or interest in  MND. After the memorial service on Friday, I guess it will all disappear!

I am angry! The President and his ministers issue statements like gone roo soon, loss for the country, he set an example, he led the way, Captain Courageous, … but why not the government? The Caprains of Industry?  Surely, there’s is the responsibility to lead the way in finding a cure. In helping us, in making life easier for us, in eradicating this scourge from our society. Why should it have been Joost’s responsibility?

After all, he’s a man. He’ just a man.

I am angry because our government turns a blind eye. They can’t look after 94 psychiatric parients, let alone the 240 odd MND  patients in this country. There is no money budgeted for MND research – in fact, there is no research facility in the land. We are dependent on family, friends, corporate donations and the goodwill of the community. Not even medical AIDS assist because these Neurological illnesses are not defined as prescribed minimum benefit illnesses in terms of health legislation.

I am angry because come next Monday, I will still be cared for my my family and my health careers from the Hospice, I will still be fighting for my medication to be paid for by the Government Medical Aid. There will still be no meaningful research done in SA, there will be no cure, and we will be learning to cope with this death sentence that has been dealt us, without any meaningful assistance from the government.

I am angry because despite all the good words about Joost (and I guess they are all true – I don’t know, I never met the man!) nothing is said about Bongani, a member of our group who also passed away this month.  Surely, living with MND is difficult enough, but couple that with living in a shack, not having electricity or running water, or a plate of food and only the hands and love of his wife Ro assist him. I will never forget the sight of his wife feeding him crum for crum from our plate of sandwiches …surely he should also be saluted for his courage , his fortitude, his perseverance . In many ways, he was a far bigger fighter than Joost – a Captain Courageous.

I am angry that the J9 Foundarion, despite being lauded for its community assistance, did not respond to correspondence regarding  sufferers plight and their needs. They selectively assisted people to encourage their marketing needs. What research have they undertaken, I most respectfully ask, and howdoes that help me or Anne or Mandy or Bongani or ….?

I am angry because the so called awareness of MND that has been generated by the Foundarion still leaves the general public including yourselves in the dark. Even the press releases were contradictory in terms of the illness.just ask yourself how much do you know now about MND that you did not previously know?

I am angry because I guess it’s just not your problem. It doesn’t affect you. After all, you don’t have MND! Joost was chosen, and Dave and Anne and Keith …

I am angry because despite Joost’s team talking on TV about the MND research wing named after Joost, in reality there is nothing, not even a Welcome desk at any facility in the country.

I am angry because thousands of women (and men) will attend Loftus Versfeld tomorrow. Because they knew Joosr?, no! Because he helped them, no! Because of his exceptional athletic ability, possibly! Because of his good looks, his piercing blue eyes, his erstwhile six pack, his abs, many!  Let’s face it, ugly people like myself and others start off at the back of the queue. Life is just easier for the bold and the beautiful. I am angry.

Will those people attendingcontribute to MND research, help other parients, set up trust funds, build clinics? I doubt it! I am angry.

Where are our so-called Friends when we need them? If there’s money to be made they’ll be there. Otherwise the ll grace rhe pages of our newspapers and organise more meetings and make more speeches and take more pictures!

Yes, I am angry!

Mandy Gurr- Snymann has been trapped in her body for 17 plus years. She posts the following on her Facebook page yesterday:

“As a fellow Motor Neurone Disease patient, I thank God for coming to take Joost home. At last he is free from the body that had become a jail … free from this thief of an illness that is cruel beyond words. May his soul rest in peace. I pray that God will comfort his children, family, friends & carers, bringing them peace. I send my love & thoughts to MND patients that I know & think of those we have lost with fondness xxx

I have a right to be angry!

Motor Neuron Diseases



Franclo Henning (Chairman) with Aviva Pelham (Patron) and Sheila Kendall (Vice Chairman)

Dr Franclo Henning was one of the specialists at Stellenbosch University/ Tygerberg Hospital, Cape Town, who diagnosed me with CBD.

He is also the Chairman of the Motor Neurone Disease Association of South Africa (MNDSA).

Listen here to his radio interview on RSG (Radio Sonder grense) today:

(it’s unfortunately in Afrikaans)



MND Day: Fri 21 June: “I am Breathing” Movie Premiere in Port Elizabeth

This premiere will take place at the Old Grey Club Lennox Street Port Elizabeth.

Time 11H30 to 13hoo

Cash Donation / Cash Bar / Club Lunch Specials available


“It’s the disease that most health professionals say they’d least like to get. It’s the most cruel and undignified end.” (Louise Platt, The Plattitude blog, 2008)

This year, on 21 June, in a wee village in Scotland a small group will get together to watch a film about a man who dies from Motor Neurone Disease (MND), also known as ALS or Lou Gehrig’s disease. At the same time, in a cinema in Finland, people are arriving from all over to see the the film, I AM BREATHING. In Russia, in the UK, across America, in Brazil, in India and across the world others have volunteered to screen the film – in village halls, schools, churches, sitting rooms, pubs, and theatres.
They have been inspired by the story of Neil Platt, who died aged 34, 14 months after being diagnosed with MND/ALS. He was determined more people should know about the disease.

Within a year, he went from being a healthy young father to becoming completely immobile from the neck down. As his body got weaker, he used his remaining months to communicate about his illness. He collaborated with the filmmakers on I AM BREATHING, wrote a blog, and committed himself to raising awareness around this devastating disease. He was determined to play a part in making MND/ALS history  and this fuelled his desire to share his story and build a community of people to join the fight.

Neil began a campaign –

– a campaign that he expected us all to finish. He wanted to be the poster boy for MND/ALS, he wanted to be on billboards, in every newspaper and across television channels around the world. During the short time that he lived with MND/ALS, he achieved a great deal – but it was really only the beginning…

“At the end of this campaign lies a cure… I am not talking about miraculous cures, you will all have gathered by now that I am a realist. I’m talking about my living a little longer, giving me the chance to impart more knowledge.” (Neil Platt, The Plattitude blog, 2009)

I AM BREATHING has been critically acclaimed since its world premiere at the International Documentary Film Festival in Amsterdam in late 2012:

“Intimate documentary examining a normal-but-remarkable man and wife’s handling of his fatal disease ranks among the year’s most moving films.” (The Hollywood Reporter)

June 2013 will see the documentary burst on to screens big and small across the world. Fuelled by Neil’s vision we will share his story and build a community of people to join the fight – and you should be part of it.

Get involved

It is by raising awareness of MND/ALS that we further Neil’s vision to combat ignorance of the disease and create an army of people across the globe, all working towards a world free of MND/ALS.
You can support Neil’s campaign by holding your own screening of I AM BREATHING on 21 June 2013, Global MND/ALS Awareness Day. Your screening can take any form – we encourage you to be as creative as possible.

We know Neil would have loved the social side of Global Screening Day and would have reminded you all to have a little fun while raising awareness. He thought it useful to remind people that even just donating the price of a pint of beer can go a long way to supporting all of the research currently being done for MND/ALS, and we would encourage you all to raise a virtual glass in his memory.

We’ll guide you through the whole process with detailed instructions. The first thing you should do is register your interest and tell us what you have in mind. If you have already done that, you can now book your copy of the film and publish your event on our website.

Any questions? Check our list of frequently asked questions or contact us.


All the Queen’s Horses and All the Queen’s Men

©2012 Edward C. Lunnon

Tuesday 5 June 2012: 5 years 9 months on … Deuce

I have mentioned before that my forefathers come from England and that my surname results from the mispronunciation of London, from where they originally came.

 I suppose that is why I love London and all it represents.

This has been an exceptional week for me and all London lovers. Sky News has been my constant companion as I have eagerly watched the celebration of the diamond jubilee of the reign of Queen Elizabeth II.

It’s the P’s that attract me: the places, the parades, the pomp, the pageantry, the preciseness, the precision, the punctuality, the picture, the people, the pronounciation,  the patriotism, the pride, the purity, the process, the perfection … (ha-ha, the Princess)

So, Saturday (in between Phillip playing rugby for the 4th team against Dale on the Philip field and Sean refereeing on the Pyott Field) I spent the day at the races.

And Sunday, despite Frank and Jenny and Lesley coming to braai, I spent the day on the Thames with the thousand other boats that formed part of that magnificent flotilla.

And Monday, after swimming at Humewood Gym (perhaps too much, because I can feel some very eina muscles today) and meetings with Duncan McDonald (Supporters’ Club) and Bruce Jefferies (Outdoor advertising), I attended the Jubilee Spectacular Concert at Buckingham Palace – not once, but twice!

Tuesday, I started watching the Parade through London to St Paul’s Cathedral, but then had to attend the inauguration meeting of the motor-neurone disease support group (more of that later!)  Later, I saw the Parade down the Mall, the balcony appearance and the flypast, and in the evening, watched a re-run of the Church service.

Thanks to modern technology and SKY and BBC, I was there.

At the end of the day, Life boils down to family and friends, Church and community, and service above self!

I saw all this in the celebrations of the last four days in London.

I saw this in the meeting at Old Grey Club this morning to initiate the Eastern Cape chapter of the SA Motor-neurone Disease Association. Whilst strictly speaking my CBD is not a motor-neurone disease, there are so many similarities in our symptoms, that it makes sense to pool our resources and help each other.

I am so pleased that Sr Gaynor Bishop has taken this job upon herself and that I have been able to assist her in starting this sorely needed support group for people with neurological illnesses here in the Eastern Cape and in Port Elizabeth in particular. May it grow from strength to strength!

In the afflictions that we grapple with daily, we are aware that there is (currently) no cure. However, we can do with all the support and assistance that we can get!


Humpty Dumpty sat on the wall; Humpty Dumpty had a great fall

All the king’s horses and all the king’s men, Couldn’t put Humpty together again!  

Motor Neurone Disease Association of SA (MNDA of SA)

I am so very pleased to announce the very first meeting in Port Elizabeth in order to establish an Eastern Cape Branch of the South African Association of

Motor Neurone Disease / Amyotrophic Lateral Sclerosis (and related illnesses)

Date:   Tuesday 5 June 2012

Time: 10h30 – 11h30

Place: Old Grey Club Lennox Street Port Elizabeth (opposite Mt Road Police Station)

Enquiries: Sr Gaynor Bishop (Professional Nurse & Counsellor)                           Cell no: 079 591 2148

Please pass this notice on to anyone who may be interested in attending.


  • 10KM RUN







14 JANUARY 2012

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