What a Prick!

Friday 9 March 2012: 5 years 6 months on … Advantage ED

Ever since becoming ill, I have always been thankful that I have not experienced any pain. A lot of discomfort, yes; but, thank God, no pain!

But all that has changed, and the last three weeks have possibly been the most difficult that I have experienced since becoming ill.

It all started, with no prior warning, in the early hours of Sunday morning 19 February.

On the Friday evening we had attended Shelley and Eddie Terblanche’s ‘surprise’ joint 50th birthday. It started with a bus trip with all the guests on board dressed in ”smart casual black with a mask” to fetch the birthday couple at their home in Summerstrand and then on to Leo’s Bistro in Walmer for a delicious supper.

Then, early Saturday morning (at three am!), I had to get up to get my lift to George with Kobus, an AlgoaFM listener who had kindly offered to take me to the Outeniqua Wheelchair Challenge.

The challenge, celebrating its tenth birthday this year, attracted over 1000 physically challenged people participating in four events – the 42 km marathon, the 21km half marathon, the 10km event and the 5km fun run.

It is a most humbling experience to see so many physically challenged people participating in “vehicles” ranging from the most sophisticated to the most ordinary of wheelchairs. The fun run alone attracted over 900 participants in wheelchairs pushed by local professional, business and ordinary everyday people and many hangers-on, all with the emphasis on the fun part of it. The main streets of George – York Road and Courteney Street / Knysna Road – are closed for the occasion and the day belongs to those in our community who live life without what so many of us take so for granted.

The trip to George from Port Elizabeth is about a three and a half hour one, and so we were back in Port Elizabeth at about three thirty in the afternoon – some twelve hours after we had left.

I had planned to attend the Concert in the Park at five pm and had an appointment to see Marcus Wyatt, the guest trumpeter at the concert. Marcus is an ex-pupil of mine and he and Andrew Townsin, another ex-pupil, had trumpeted Pera down the aisle when we got married in 1990.

But, I was a bit tired and decided to postpone the evening concert and attend the Sunday morning one instead. A lie-down seemed more in order …

Lesson #1: don’t procrastinate!

I woke up at three on Sunday morning, my whole body in a spasm, my muscles tensed up and with the most excruciating pain. By seven we called the GP, and during a home visit nogal, I received Voltaren injections, pain killers and an anti-inflammatory – coxflam: one tablet twice a day; synaleve: two capsules three times a day for pain (warning: may cause drowsiness). I can quite easily see how people like the Jacksons and the Houstons become addicted to prescription drugs .. and take just a few more every now and then when the pain doesn’t subside!

I wafted through the next two days, missed the Concert in the Park (and the Redhouse River Mile scheduled for Sunday afternoon), but by Tuesday evening was feeling much better – so much so that I was able to attend Elvis Blue’s concert at the Grey’s Afrikaans Week celebrations in the school hall.

Although I was left with a low level numb sort of pain, the excruciating stabbing pain eased off and the week became better – until Saturday evening (25 February), whilst watching rugby on TV, when it all started up again. Luckily I had “left-over” medication in hand and was able to doctor myself and lie down – but even that was a painful affair! And so some more drugs … Pax: one at night and Stilpaine: 2 tablets four times a day!

The next and third attack happened last Sunday evening (4 March). It is wearing me down and it is becoming more and more difficult to lift my hands and arms. Mentally, it takes its toll, too.

So, first thing on Monday morning, I spoke to the doctor and my biokineticist. It was decided that I needed to see a physiotherapist / chiropractor, and luckily I was able to get an appointment with Dr Pieterse at two that afternoon.

All the muscles in my back go into a sort of spasm and tense up. “Had I tried needles?” I was asked.

I had not.

So, one for one, I had needles pricked into the muscles in my back.

And, on Tuesday morning, I felt like a new person. All the pain was gone! And remained so until Friday morning, when I could feel just a tinge of that low-level ache returning. Luckily, another session had been scheduled for Friday, so round number two of the “needle attack” took place!

Lesson #2: Don’t under-estimate the contribution that anyone can make in life – even the smallest prick can make a huge difference!

So three weeks have passed by with far too little been done. I have been down but not yet out. How long will the pricking last and how long will it bring relief? Who knows?

But, in the meantime, don’t be a prick … enjoy what you can!

Jan 24 2012

(Un)Lucky 13

Friday 13 January 2012: 5 years 4 months on … Deuce

Tuesday 24 January 2012 … Advantage CBD

I started writing this blog on the evening of Friday 13 January 2012. Other than writing a title I did not write anything else – simply because I started watching, on Sky, the breaking news of the running aground in the Mediterranean Sea of the 4000-odd passenger liner, Costa Concordia, on the coastline of the tiny Tuscan island of Giglio, just off the western coast of Italy.

It was news in the making – another human tragedy playing itself off on TV. I enjoy watching these real life “reality shows”! Life is just not, excuse the pun, plain sailing!

And quite frankly I have not been in the mood lately to write much.

Saturday morning was the “Run in the Parks” and after my 5km walk, I was even less inclined to continue writing. By Sunday, I had developed a rash around the top of my left leg, just where my leg brace ends. By Monday, the itchiness was driving me mad – so yet another visit to the Doctor.

More pills (celestamine: 3x day for 5 days) and the aptly-named Stopitch cream were prescribed.

The rest of that week and this week, I have been miserable. Intense heat and humidity, a rash increasing rather than decreasing and the non-use of my brace (simply because it aggravates the itchiness) have all contributed to my frame of mind.

Other than attempting to attend to some administrative things (like paying accounts and filing!), I have not been too productive, and that makes me even more negative. It’s a spiralling whirlpool of emotion and self-pity. And having been ill now for almost five and a half years doesn’t make things any easier.

I’ve become like a computer that just “hangs”. You know the feeling – it’s when nothing happens on the computer; the little sand-timer just whirrs away on the screen but everything freezes. It won’t move forwards and it won’t move backwards. The only solution is to switch off and start all over again. In computer terms, they talk about “re-booting”.

And so these are the times that I have to re-boot myself, and this time it’s taking longer than ever before.

By last Sunday, one week on, the heat continued unabated, the itch was driving me mad, my right leg – for the first time – has shown weakness related to the CBD, and I slipped twice during the week, and the rescue divers had found 13 bodies in the partially submerged wreckage of the Costa Concordia.

That evening, we watched on TV, the movie Apollo 13.

It took me back many years to 1970 when I was in Standard 6 and 13 years old! Apollo 13 was to be the third mission to land men on the moon, but on 13 April 1970, a massive explosion in an oxygen tank put an end to the mission to land on the moon and, from then on, it was also news in the making – how to get the three astronauts safely back to Earth.

Those were the pre-TV days, but I remember, so vividly, my little black Hitachi transistor radio with its brown leather carrying case and aerial, and an earphone to listen to the human drama late at night in bed when I should have been sleeping!

I remember the voices from deep space, whining and hissing on the English programme (there were only three programmes: English or the A station, Afrikaans or the B station and Springbok Radio). The drama of that rescue and the eventual safe recovery of the three astronauts from the Pacific Ocean remain in my mind, and became so real as we watched the pictures for the first time – 42 years later!

(So sorry that I can’t remember what I had for breakfast anymore, or where I put my note book in which I wrote my notes to remind me what to do today!)

Monday morning at 10am saw me return to the doctor – now I’m on Maxaderm and Difluzole and hopefully that will get rid of the rash! At 1pm it was my daily visit to the biokineticist, at 3pm, my annual visit to the neurologist and at 4pm a visit to the psychologist. It’s just another day in the human drama of living with CBD!

(“Well maybe, just maybe, it isn’t CBD – after all you’ve been around five years now and our statistics show that patients with CBD don’t really last this long …” – that’s the comforting news that I get at my “annual” … – “but then it’s definitely some kind of extra pyramidal neurological disorder, and who knows, if you hang around long enough, they may just find a cure … after all, they are doing a lot of research … “.

Yes, it’s comforting to know that we can land men on the moon and bring them back safely to Earth, we can float multi-passenger ocean liners on the sea (and double-decker Boeings in the air, for that matter), and we can save thousands when the liners hit the rocks (and lose just a few) – but, a hundred years after documenting the first cases of motor neurone disease, we are still no closer to rescuing those human beings who, on their life’s journey, become stranded by that disease. Or have an itchy rash for that matter …

(to be continued …)

Jan 19 2012

The Herald 18 January 2012

Event may become annual one

18 January 2012

LAST Saturday, Walk/Run in the Parks – road races over 10km and 5km, and a 1.2km walk for those with disabilities – was held in Mill Park and Newton Park to raise funds, and to create awareness of the neurological motor neuron disease, corticalbasal degeneration, and people with special needs (“Disease awareness the focus”, January 13).

I would like to publicly thank Loynes Jenkerson and his committee from the Walmer Athletics Club for organising and hosting the event, the Grey schools for providing the venue, all the sponsors, the traffic department, the helpers and the 1000-plus participants from as far away as Port Alfred and Graaff-Reinet.

It was a most enjoyable morning and the beginning of what will hopefully become an annual event on the road running calendar in Port Elizabeth.

Ed Lunnon, Westview Extension, Port Elizabeth

Jan 18 2012

The Race of Life

Wednesday 18 January 2012: 5 years 4 months on … Deuce

My speech at the prize-giving at the Run/Walk in the Parks road race events held on Saturday 14 January 2012 at Grey Junior School, Port Elizabeth:

Ladies and Gentlemen, Boys and Girls, and especially the busload of 20 athletes from Graaff-Reinet.

Imagine, if you will, the Race of Life.

Like today’s race and any other road race, it begins with a registration form and the allocation of a number, which you keep with you for the entire duration of your life.

At the completion of Life’s race, a death certificate, like a medal, is issued to indicate that the race is finished.

For some, it’s a longer race and for others a very much shorter race. For all, like the song says, it’s a winding road.

There are uphills and downhills, watering points, potholes and stumbling points; sometimes you race in groups and other times you are all by yourself.

Some people appear to do it so easily – they just sail through it; others have great difficulties and obstacles to overcome along the way. It’s not just plain sailing for them.

What is important, however, is that as participants in the race we need to enjoy every step of the way, from start to finish, put in all we’ve got and above all, have fun – because all too soon it is over!

I hope that you have all had fun today.

I received a note yesterday from a friend which read “I am encouraging my friends to run your race on Saturday.”

Most healthy people have no idea what it is like to run my race or the race that so many people with special needs run each day. That is what today has been about – raising awareness about people whose race is just a little bit more difficult than your own.

So next time you brush your teeth or don your running shoes or just go for a walk in the park, please spare a thought for those of us who are challenged to do like wise!

Thank you for being here today.

Thanks to Loines, Colleen and their team for all the hard work in organising this event and to the Headmaster and Rector of the Grey Schools for the use of their facilities.

Thanks to all the many sponsors whom Alec has mentioned.

By your participation in this event today, you have not only helped raise awareness about the special needs of so many people, but you have also contributed financially to making our life’s journey that much easier.

I am humbled by your support and thank you most sincerely for that.

I hope and pray that this time next year, in 2013, we may all be here again, and that Loines’s vision of making this, the ED Lunnon Walk/Run in the Parks, an annual event, will come to fruition.

Thank you!

Jan 18 2012

It’s Not Just a Walk in the Park

Tuesday 17 January 2012: 5 years 4 months on … Advantage ED

Two months ago Loynes Jenkerson was unknown to me.

Then I received a phone call from him – to thank me for our radio programme and what it meant to him personally.

I invited him to join me for coffee at Bluewaters café and, as they say, the rest is history.

We discovered that we had a mutual interest in road running – me having run my first official Knysna half-marathon with Lindsay Brown in 2000 and my last one in the year before I became ill. Loynes is still an active runner and the organiser of many races. In our discussion we decided that this July 2012 would see a number of us walking that half-marathon again!

The next thing I knew, Loynes called me again, and asked me for my permission to organise a race in Port Elizabeth to highlight my illness. I agreed to the ED Lunnon Run/Walk in the Parks on two conditions: one was that I would not be expected to help organise the programme and, secondly, that there would be some or other event that would be arranged for people with special needs.

So within the short period of just over one month, and that over the holiday period, the event was organised and put together by Loynes, Colleen Muller and his team of helpers.

There was to be an official 10km run/walk, a 5km fun run/walk and a 1km “walk” around the Grey Schools for people with special needs – people with wheelchairs, crutches, walking sticks, blind people, … you name it!

Permission was sought and granted by Grey Junior School to use their facilities in Mill Park as the starting and finishing point, with parking facilities at the High School. The races would take place in Mill Park and Newton Park – hence the name “Walk/Run in the Parks”.

Loynes is one of those people who does first and then asks – he does not see the wood for the trees – and just gets on with it. “It’s better to ask for forgiveness later than to ask for permission in the first place!” (my paraphrasing!)

Yvonne Anderson was brought on board to organise the handicapped race.

Within days, the framework and the sponsors were there, within weeks the print material and advertising and before the end of December, the first registrations were coming in!

Well-known sports personalities like Steven Hunt, Rory Duncan and Kevin Paul came onboard. People from all walks of life offered to help.

And so came 14 January 2012.

I was slightly nervous when I approached the schools. Firstly, I had volunteered to walk five kilometres and secondly, I was hoping that Loynes would not be disappointed when he saw a few hundred people arrive for the events.

But what I saw in front of me was a sea of humanity – some one thousand people, from as far afield as Union High School in Graaff-Reinet, were already lining up at the start in College Drive.

I became even more nervous. Was there the capacity to handle so many entrants?

“Oh thee of little faith!”

The weather was perfect. The excitement palpable. Late registrations and more late registrations. Last minute hiccoughs.

But, at 06h30, I pulled the trigger to start the 2012 ED Lunnon 10km Run in the Parks, then at 6h45 the same for the 5km run/walk (and then getting myself into the pack to participate, too) and getting back before 07h45 to start the special 1km race.

At 8h30 the prize-giving took place on Junior Grey’s Osborne Field and by 09h30 the clearing up process was in place. Putting away all the equipment for the 2013 races and what will hopefully be the beginning of many more.

Truly, a run in the park may just be a walk in the park for some, but at the end of it all, it takes small ideas from people like Loynes to start big things – in this case, a new movement to raise awareness of people with disabilities, whether they be neurological like CBD, or as a result of motor car accidents.

I hope to see you all in Knysna in July and in the Parks again in January of Twenty Thirteen!

(PS I will post results and pics as soon as I receive them.)