Playing with Ice

7 years 11 months ill …

The last few days have seen a worldwide viral explosion of “Raising awareness of Motor Neurone Disease (MND) / Amyotrophic Lateral Scelerosis” by having celebrities pour iced water over themselves.

What a noble and wonderful cause, because not only is awareness being raised, but so also is money being raised for the cause, and that, I guess, is the primary reason for raising awareness in the first instance!

When I was diagnosed with CBD some eight years ago, I certainly was not aware of degenerative neurological illnesses.My sole objective these last eight years, through my radio programme, my blogs and my personal appearances, has been to make people aware about these sort of illnesses. I am, therefore, only too happy to see these sort of awareness campaigns being staged.

But the “staging” of the campaigns and the concomitant raising of funds is where I have a problem.

Very glibly, it is advised that the funds raised are to raise awareness, for research, for medical assistance, for charity, for some or other Foundation, organisation or whatever.

And a gullible public buys into this! No one really asks how much was raised, how much was spent on expenses, how much ended up in the coffers of the organisers, and how much actually went towards the actual cause itself.

The organisers are usually quite mum about producing an income statement for public consumption.

Right now, I am aware of some six (maybe more!) different “organisations” that are “raising awareness” and funds for MND in the Port Elizabeth, Jeffery’s Bay and Grahamstown areas. Then there are other public activities being organised supposedly also for other charitable reasons.

Despite there being legal requirements and guidelines for such activities, many of these so-called charity campaigns are simply flouting the law and are mere business enterprises making money for their entrepreneurs. Clever marketing campaigns enable them to continue to do so and flourish, because a sympathetic public believes that their humble contribution is going towards a good cause! Unfortunately, the good cause never sees the contribution!

For the record, I am unaware of any centre in South Africa or any medical professionals who are actively involved in MND (or other neurological illnesses) “research”! I would be only too happy to be shown otherwise or to be told just how many millions of the funds being raised are actually ending up in the research coffers for public benefit.

For fund raisers to claim that the money is being used for MND research in South Africa, is, in my opinion,just not true!

More money should be going towards lobbying government to ensure that the Health Act and Medical Aid rules are changed in SA to ensure that neurological illnesses are recognised as prescribed minimum benefit illnesses. MND patients, therefore, would be assisted with medical expenses by their medical aids and would not be dependent on public welfare and kind donations of these so-called fund raisers!

We need to raise awareness that, because of existing legislation, MND and other neurological illness patients, by and large, have to foot their medical accounts themselves. What discrimination is that?

But, when all the ice has melted and the temperature and awareness raised, just where is the money going? I think the public needs to start asking these questions and demanding answers!

We do so sorely need more awareness to ensure that research is being done into these horrible diseases. Maybe no cure for us for us but, someday, others will be spared the horror of having to deal with these debilitating neurological diseases.

I Remember … (1)

7 years 7 months ill …

Physical: Advantage CBD / Mental Deuce

I remember …

The Motor Neurone Disease Association of SA meeting at Old Grey Club.

We had a very touching and different meeting. Kasturi Pillay and her children came down to PE from Durban. Her matriculant daughter gave a talk on “Living with dad and MND.” Kasturi spoke afterwards and shared much insight on her journey and her young husband’s acceptance of his condition, and what he taught them as he journeyed with MND until his death at age 44.

I remember …

Being doubled booked for therapy on Wednesday and getting a free session on Thursday, and forgetting to go for my weekly beard trim at Grant’s …

I remember …

Watching Grey play rugby against Michaelhouse, narrowly winning by 10 – 7,  getting caught up in the beer tent and just beating the rain downpour on the way home

I remember …


Heading off to the Bathurst Agricultural Show, staying at the Settlers Cottage circa 1821, eating at the Pig and Whistle, the Earthen, Lara’s Eatery, the Bathurst Arms, the nurseries, craft shops, and thanks to Tanya for the hospitality. It was great meeting up with so many familiar faces again!

I  must remember …

The ABC, A Bathurst Country Affair is to follow in August over the Women’s Day weekend. More fun to come!

I remember …

As a kid, 6 April, a public holiday, was celebrated as Van Riebeeck Day – the day that Europeans under the leadership of Jan van Riebeeck from Holland first came to settle at the southern point of Africa. Bringing Christendom to Africa, some would say, and the beginning of our problems, others would say …

I remember …

Rushing home for the 10th Iron Man from Barry’s house at Villas Marinas on Marine Drive. I watched the first one back in 2005 when I was still well … how things have changed since then. And it got quite cool in the evening – watch the video:

I remember …

Oscar Pistorius taking the witness stand in his murder trial in Pretoria and  Shrien Diwani arriving at the  Cape Town High Court after fghting extradition in London for three and a half years now. I was in London in November 2010 when his wife was killed in Cape Town and the British press made South Africa look like a banana republic because of the murder!


I remember …

The Australians detecting the pings from the black boxes of the mystery disappearing Malaysia flight 370





Frankly I Don’t Give a Damn

©2013 Edward C. Lunnon

Tuesday 25 June 2013: 6 years 9 months on …

Physical: Deuce / Mental: Advantage ED

The month of June is International Motor Neurone Disease Awareness month and Friday 21 June – our winter solstice day – is also International MND Day.

The local branch of the MNDA of SA arranged an awareness breakfast on Saturday and on Friday the movie “I Am Breathing” was screened.

Ironically, I have NOT been breathing – at least not well!

Last weekend (15 June), feeling well, I spent time at the Patensie Citrus Festival. Friday night I visited Eppie and Lande Ferreira (with Matt Sexton, Kings coach, and his family) and I slept over at Pietie and Coba Ferreira (and braaied with them and ex Helshoogte boarder Corne Muller.)

Saturday morning, we did a tour of the Citrus packing sheds and then “did” the festival. Stalls, music, singers, beer tent, people from far and wide … I was humbled by how many people, even here in Patensie, recognise my voice from radio. It is a measure of how the message of neurological illnesses is being spread far and wide. I am most grateful to AlgoaFM for giving me the time each Wednesday for our programme “ED is in wED”!

I returned late afternoon to Port Elizabeth because we had a farewell dinner with the Stapletons – they have headed off to Thailand for the holidays!

Everything changed on Sunday morning – Father’s Day. I woke up with a cough and feeling grotty. For the first time in almost seven years since I have had CBD, I was also ill with something else!

I stayed in bed and wafted through the next few days being Father’s Day, Youth Day, Public holiday, long weekend, Monday, Tuesday … and whatever day it was. I am not quite sure anymore which was what!

I saw Dr Butters and he confirmed that I had bronchitis – the last thing that anyone with a degenerative neurological illness wants (bearing in mind that our chest muscles are affected, we breathe shallowly and we eventually die from lung complications and illness such as pneumonia.)

For the first time since I have had CBD (seven years now), I have been confined to bed (other than when I broke my elbow some five years ago.)

It’s been a test of my resolve and a wake-up call of what lies ahead.

Watching the movie – the story of Neil Platt’s fight with MND – also did me no good. But in between, I went to listen to Elvis Blue sing at Grey, saw the public screening of the movie and attended the breakfast on Saturday. Alan Solomons spoke about the Kings rugby franchise – beating the odds – and it reminded me so much of the fight that we have with MND. Mandy Gurr, a local ex-theatre personality and singer who has fought the illness for some 15 years now also spoke (with difficulty but with so much courage). She leads where we still have to go, and what an example of courage and determination she sets for us who battle with so many different kinds of illnesses that life throws at us.

“Raising awareness” is the term that we hear so often when we talk about illnesses of various kinds. Often the “raising awareness” goes hand in hand with “raising money” because most cases of battling illness go hand in hand with battling finances. Becoming sick becomes a financial battle as well! That’s often why we have these “awareness” days and functions.

But I have also come to realise that unless dread disease and severe illness hits us personally or our immediate family or close friends, then – quite frankly – we don’t give a damn!


We don’t prepare for it, we don’t care for it and we simply ignore it and hide it away. We live our lives as if it will never hit us – others yes, but not us.

It’s only when it comes like that “thief in the night” that we are forced to pay it much attention.

Hence, my motto, for those who have the gift of good health – LIVE.LIFE!

Last night, I went to listen to Prof Cyril Karabus speak about his recent traumatic experience in the United Arab Emirates (Abu Dhabi). (He had been found guilty on “murder” charges in his absence as a result of a young patient of his having died from leukaemia ten years ago when he did a locum there. Now, he was detained when passing through the airport on his way back to SA from a family wedding in Canada.)

In a moment, his life, and that of his family, was changed by the course of life!

I’m starting to feel better. It’s time to LIVE.LIFE again!


I am Breathing


Thursday 20 June 2013
6 years 9 months on …

Advantage Bronchitis!

It is somewhat ironic that, in this week of the release of the movie I AM BREATHING, I should get bronchitis – for the first time!

I am now in day 5 of not being well all started on Father’sDay – Sunday. Hopefully I will be well enough to attend the premiere screening of the movie tomorrow.

In the meantime, I have personally watched the movie. It is not for the feint-hearted. And for a few moments I have allowed myself to think ahead of where this CBD takes me and my family. I get scared, but it kickstarts my coping mechanism. I won’t allow myself to dwell too much in the future.

There is still too much to do in the present – so I can’t waste too much of it.

A few of us in this life are selected to be the Neil Platts, some are selected as carers and helpers; and for the rest – the public: you become those people that we depend on to fight our cause and to help RAISE AWARENESS of our situation.

I hope to see you at the premiere tomorrow at 11h30 Old Grey Club Port Elizabeth.


Amigos Para Siempre (Friends For Life)

Wed 19 June 2013
Advantage: common cold

I had a cold. I now have bronchitis. That’s not good news for someone with CBD.

So Charlie and I have spent the day in bed – watching cricket: SA vs England.

Charlie’s clearly bored! So am I – my brain remains too active and sharp. It just can’t control my body anymore. So my body is failing me.

Charlie’s body is fine. His brain controls his movements well. Maybe his brain isn’t as sharp as mine!

Guess we could pool our resources … Friends for Life!

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.


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.