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.

PLEASE IGNORE ALL LINKS ABOVE – HOWEVER, FOR MORE INFO GO TO http://www.iambreathingfilm.com/

The Cape of Stormers

©2012 Edward C. Lunnon

Tuesday 27 March 2012: 5 years 6 months on … Deuce

BA Flight 6324 on Wednesday 14 March 2012 was scheduled to leave Port Elizabeth airport at 09h50 – destination Cape Town International Airport.

Before I could board, I had to do my radio interview telephonically with Lance from the terminal building an hour earlier than usual – attempts to obtain permission to broadcast ED is in wED from the air at 10h30 had failed.

I sat chatting to Gareth Hunt until the broadcast was about to begin. Gareth’s brother Steven plays for the Springbok 7’s. Then the broadcast, then boarded, seated in 15F (at the right hand side window to see the coast!) and then take-off in an easterly direction over Algoa Bay towards East London.

But a sharp bank to the right put us in the correct westerly direction headed for Cape Town.  It was a beautiful clear morning – the light blue sky juxtaposed by the dark blue mountains, the Indian Ocean below, the white beaches, the green coastal plain and in the distance the brownness of the Little and Great Karoo’s framed by the various mountain ranges in between  us and them.  

We followed the south African coastline and passed over the Garden Route:  Jefferys Bay, St Francis Bay, the Tstsikamma, Nature’s Valley, Plettenberg Bay, Knysna, the Lake District and then George airport, 3 kilometres below us and more or less the halfway point between departure point and destination.

From there, and as we started descending into Cape Town, we followed the more inland route to the south of the Outeniqua and Langeberg Mountains. Places like Riversdale and Swellendam passed by on the coastal plain, and in the Little Karoo, Oudtshoorn, Barrydale and Montaqu.

Then my heart missed its usual beat as the dark blue mountains of the Western Cape moved into sight. First the Hottentots-Holland Mountains, then over the Drakenstein Mountains, and then a sharp bank to the right – and as the right wing pointed sharply downwards towards the earth, Stellenbosch – my birthplace – and Helshoogte, my university residence, came rushing up towards us. I thought the pilot had done that manoeuvre especially for me!

Three more manoeuvres to the left brought us from our westward flight facing back to the east and ready for landing at Cape Town International . During that process, the Atlantic Ocean and Robben Island  came into view and then the mother of all views, on our right, as we landed at 11am: Table Mountain flanked by Devil’s Peak and Lion’s Head. 

What was initially called the Cape of Storms and later the Cape of Good Hope was directly below me.

I was Home yet again!

This time for a school reunion at my alma mater, Hottentots-Holland High School  – aptly named after the mountains that surround the Valley, and Somerset West, Strand and Gordon’s Bay.

Whilst we waited for our luggage, I joked with Gareth about partying in Stellenbosch and being tempted to stay too long in the Winelands. We joked and parted, and when I turned on my cell phone, the first message to come through was to advise me of Gareth’s father’s death!

Gareth’s trip had nothing to do with partying in the Winelands – it had been all about his dad and yet he had kept a smiling face and not said a word to me! I felt so bad!

I phoned both Gareth and Steven to express my condolences, and by then Sebastian, my nephew-in-law was there to fetch me.

As usual, he had a surprise for me, and we headed straight to a newly found German pub in the foothills of the Hottentots-Holland Mountains, overlooking Strand, Gordon’s Bay and False Bay. Two litres of beer later, lunch and obtaining some business for my sister Lyn’s printing company, we headed for her home in the Strand – what had been our family home for some thirty years – and my base for the next four days.   

I was determined to keep this trip as easy and slow as possible – pace myself just to make things a little easier!

Thursday morning we took a trip to Stellenbosch, and planned to have coffee with my niece Jess at the café in the Botanical Gardens. She overslept, so we had a bite, then visited Helshoogte, and headed of home.

I went for a 5km walk along the Strand Beach and had a swim at Melkbaai (Milk Bay) – something I haven’t done in many a year! The weather was wonderful and the water was warm! It was so lekker being home!

 A short nap preceded a visit to the driving range restaurant where I was joined by ex-school and Varsity mates, Herman van Heerden and Jaco Olivier.

Later Herman dropped me off for supper at Estelle Jordaan’s home in Heldervue, Somerset West.

Estelle and I last saw each other in 1969 when we were in Standard Five at Hendrik Louw Primary School in The Strand. We had spent our primary school years vying for academic positions 1 and 2 in the class. She went on to Rhenish in Stellenbosch and Rhodes University in Grahamstown and I went on to Hottentots-Holland in Somerset West and Stellenbosch University. (She calls herself a nurse and is, in fact, the Nursing Executive on the Executive of the private hospital Medi-Clinic group.)

We spent the evening eating, drinking and reminiscing about the 43 years that had passed by!

On Friday morning, I paid an all too brief visit to my Primary School, Hendrik Louw. Unfortunately, it has been completely rebuilt, so other than a few photographs to jolt the memory, there is very little to reminisce about.

Then on to see Sonja van Rhijn, who was as school a year or so ahead of me, and now has MSA (Multiple systems atrophy). We spent a great two hours together, although anyone listening to us would not have thought so. We discussed and compared our diseases, our symptoms, our ups and downs, and our joys and concerns. It makes it so much easier to know that other people out there can understand what we are experiencing and going through! We can laugh and cry with each other, and yes, we can understand each other. It makes our burden so much easier.

I was late for the usual Friday lunch braai at the Ridgeways Furniture Store, but enjoyed the hotdogs anyway (and was delighted to see Sebastian’s Railway Stand season tickets)! So another power snap nap before we headed off for Newlands to watch the Stormers take on and beat the Blues in a Super 15 rugby game. There is always a great atmosphere to experience at the home of the Western Cape’s rugby, and which may not be the home for much longer, what with talks aplenty about moving to the newly built World Cup Soccer stadium in Green Point, Cape Town!

Then the big day arrived – our reunion at the De beer’s Football Club. I deliberately spent a quiet day so as not to overdo things.

Lyn and Anton dropped me off at the venue and by the time Anthony West took me home at 1am, there had been a spitbraai by Lappies Labuschagne, dancing, 70’s music, talking and laughing about the preceding 40 years and the seventies that we had spent at school together.

It was a tremendous boost to meet up and reminisce with friends of yesteryear. What had started off as a page by Karen Holthauzen on Facebook, “Somerset West Nostalgia”, a few years ago, had ended up as a real-life get-together of so many of us who have been privileged to grow up and be schooled in the Hottentots-Holland Basin.  

On Sunday morning I transferred from Strand to the Wüsts in Durbanville – almost my home from home! After a lunchtime braai with Willem’s mother and their daughter, Anagret, also joining us, we headed off for Greenpoint and a long 4 km walk along the Atlantic seaboard towards Sea Point and back. A latte at a local coffee shop, in the shadow of Cape Town’s Soccer Stadium, finished off a wonderful weekend in the Cape!

After a quiet Monday morning of taking stock of myself, Gretel and I went for lunch at the Tyger Valley centre.

Then, a visit to my Std Five teacher, Mr Peter Preuss and his wife, who now live in Monte Vista in Cape Town’s northern suburbs.  Although only two handfuls of fingers separate our ages, at the time in 1969, he had seemed so large and intimidating!

It was two of the most wonderful hours that I have spent in a long time, talking about family, friends and fellowship – of growing up in The Strand. It was emotional, too, and I wiped a tear or two away as I headed back to Durbanville …

… and on to Cape Town International at ten on Tuesday morning 20 March. We left on time at 11h30, flying off in a westerly direction over False Bay and The Strand and this time in an A seat on the left-hand side of the plane (pre-booked by my niece Nicky who works for BA at Cape Town airport).

This was in order to get that last view of our family home in Gordon’s Bay Road, Strand, the Helderberg and the Hottentots-Holland Mountains, before heading straight back over the Overberg, George, the Garden Route and the direct  short landing from west to east into Port Elizabeth at 12h45.

Sean was there to fetch me. We went home and then directly to Gary Hunt’s funeral, back home, and then back to the airport to say goodbye to Pera who was heading off to Italy that very evening.

Sean and I then decided to have a 2-for-the-price-of-1 sushi at the Cape Town Fish Market.  There he was also able to put his First Aid skills to the test when a patron, allergic to sea-food, dropped over stone cold within seconds after eating the stuff … 

It had been just another “quiet” weekend in the Cape of the Stormers!

 

 

Circuit Breaker – ALS Video

Saturday 19 February 2011: 4 years 5 months on …

I recently wrote  in CIRCUIT BREAKER (Version 2) – please read it – about a number of different neurological illnesses, including ALS (a cousin disease to CBD).

One of my American “sisters-in-law” from Kansas USA, Jackie Whitley, shared this video with me. Please watch it.

Thanks !