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





The Cape of Good Hope – Day 9 (Sunday)

(c) E.C. Lunnon 2011

Tuesday 1 November 2011: 5 years 2 months on … Advantage CBD 

The holiday agenda for the week was penciled in as follows:    

Sunday morning                              Return to Port Elizabeth

 (Plus a list of people to see and things to do – if time allowed!)

I have now, at last, inked in the gaps… the holiday diary is completed!

Day 9 – Sunday 9 October 2011

It was the time …

… For the holiday to end

… to pack up for oulaas (the last time)

to return to Port Elizabeth

… to return to work and school and home

… for the Springboks to play Australia in the quarter-final of the World Cup

There was no TV set in our cottage, and hence we would not see the big game for which South Africa had been preparing for weeks now, and which would be watched by almost everyone in the country.

It was even scheduled on our itinerary … watch rugby over breakfast and then head home!

Such is the nature and hospitality of the people of the Koo, that when I asked the lady who had prepared our lunch on Saturday where we could watch the game, she immediately invited us (total strangers) to come and watch the  game at their home on the farm next door.

However, Pera felt that we would be intruding, and would not go. I lost it again – both the opportunity to watch the game and my volatile temper.

But, it was not to be. And so we packed the car, left the Cottage at 07h30 and headed east: the R62 to Barrydale, then the Tradouw Pass through the Langeberg to Heidelberg where we joined the N2 and then straight on to Port Elizabeth. We would be back by about 14h00.

We listened to the game on Radio 2000 in the car. I enjoyed the passion and enthusiasm of the commentators who, unlike their TV counterparts, have to place the dots, join the dots, colour it in and paint the whole picture in order for the listener to know just what is happening on the field.

But this is mountainous terrain and I did not enjoy losing the signal every so often … and it always seemed to happen just at the wrong time!

So we went into the Tradouw Pass in the excited winning situation of 9 – 8! It’s a beautiful pass and one that meanders along the course of the river through the towering mountains on either side. I’m not sure we really noticed much.

And then we were

…  out of our skins

…   out of the Pass

…  out of the signal-less Radio 2000 area

…  and out of the World Cup!

Australia had scored a penalty whilst we had no signal.

It was 9 – 11 all over again – and, this time, not in New York, but in Wellington.

Who was to blame for this atrocity? –  we could only earmark the referee!

The car became quiet. The world had ended and our holiday had ended.

(But not before we stopped for lunch in Plettenberg Bay. Why there? Because it was lunch time, as usual we were all hungry, and it’s a Lunnon tradition to stop for whatever meal at the Rod and Reel.)

However, tomorrow, the world would revert to normal and all would be the same again. Including the speeding fine:

Go to Jail. Go directly to JAIL. Do not pass GO. Do not collect R200. And just when you needed it most because, in fact, you’d spent it all on the holiday!


With grateful thanks for a wonderful holiday to:

Sebastian, our tour guide

Michelle, for allowing him to accompany us

Hannah, for not waking me up at night


PS This is the e-mail that started it all:

From: Sebastian

To: Ed

Subject: Montagu


 Plan of action for 7/8/9 October.

 7 October 2011: Leave Strand early Friday morning so that we can do the Robertson wine route, will have lunch in between wine tasting, after lunch we will wine taste some more, After wine tasting we will make our way to the cottages just outside Montague,(www.oakguestcottages.co.za) where we will settle for the night. We can braai the evening.

 8 October 2011: We can have a light breakfast, then make our way to the Protea farm for the Tractor ride at 10:00 after the ride we make our way to the potjie area which is on the farm for lunch.(http://www.proteafarm.co.za).  Rest of the day we can relax, maybe do some sightseeing of Montagu.

 9 October 2011: We can have breakfast in Montagu and say our Good bye’s……..

 The amount you can transfer for the Two days including accommodation, Tractor and Potjie is into Michelle’s account.

 M Ridgway

 ABSA Strand

 Hope this is  fine.

 Nearer the time we can chat about the weeks arrangements.


 Home is Where the Heart Is



High Five!


Monday 5 September 2011: 5 years on … Advantage ED

September is the month of birthdays.

Today is my sister, Ingrid’s, birthday.

Next Tuesday 13 September would have been my father’s birthday.

I was born on Tuesday 18 September 1956 so Sunday 18 September 2011 is my 55th birthday

And, of course, this September is my 5th birthday with CBD – having first noticed strange symptoms in September of 2006.

I had first noticed that I was having difficulty typing on the computer keyboard with the ring finger and pinkie of my left hand. Then, I needed to hold my left hand with my right hand when I shaved.

The disease affected my left side first, and being left-handed, I noticed the problem early. I ignored it at first, thinking it was a re-occurrence of a herniated neck disc that I had experienced in 2000 (shortly after returning from Disney World in Orlando, Florida) and for which I then had surgery, fusing  two discs with a piece of bone from my right hip.

Over the years I have had numerous operations – my hip is in my neck, and I have bone from my knee in my right big toe to “fix” a fracture I obtained during my military service in Oudtshoorn. I spent many weeks at the 2 Military Hospital in Wynberg,Cape Town.

But, it was on a September hunting trip that I started feeling the numbness in my right arm.

Sean and I had gone hunting with Gary Webb from Addo and Andrew Kettlewell, our plumber from Andrew’s Plumbers. Andrew and his family had decided to emigrate to Australia, and this was to be their last weekend in Africa. Andrew wanted to spend it with his son under the African sun in the African bush, and he invited Sean and I to accompany them. We had just bought our white diesel Peugeot and we drove the brand new car through the muddied gravel roads of the Kirkwood area. I remember not being too happy about that.

But it was a tremendous weekend – up in the mountains around Kirkwood. We slept in the hunting cottage and braaied on the Saturday evening as one does on hunting trips! Everything was perfect, except for my arm. I just kept quiet about it though.

And when we arrived home on the Sunday, 17 September – the day before my 50th birthday – Pera had prepared a surprise party and we braaied again, with everyone who had come round to celebrate.

That next week was the start of the 5 month journey visiting the medical fundi’s – the doctor, the chiropractor, the physiotherapist, the neurosurgeon, the neurologist, the MRI and CAT scans, and eventually Tygerberg Hospital and the diagnosis of corticalbasal degeneration.

I was told that I would, most probably, become severely incapacitated within three years and would die within five.  There was a caveat though: “jokingly” I was told that if I made five years I would maybe consider coming back and suing the specialist for giving me the incorrect information, and for pain and suffering!

Well, it’s five years on:

Andrew, Carol and family are alive and well and living in Australia.

Ed is alive and not so well – but far from severely incapacitated or dead – and still living under the African Sun.

Sean now does the driving.

High Five!

(Maybe I should call my lawyers to call their lawyers in order for them to go and have lunch together  on my account!)

Down Under! (but not yet down…)

Friday 28 January 2011: 4 years 4 months on …

Imagine travelling in China for four years and never hearing any English. Then one day, someone arrives and converses with you in English. What excitement!

Well, that’s how I feel – I am so excited – because this week I have found someone who understands what I am experiencing:

For the first time since I was diagnosed with CBD just short of four years ago, I have had direct correspondence with someone else who also has the illness. Her name is Alison Bevon from South Australia and, with her permission, I am publishing her email to me:

Dear Ed
Thank you for replying to me.  I do feel like I have known you for a few months now.  I have been reading your blogs regularly and I have attempted to listen to your radio programme, but because I live in South Australia and we do not have a very good wireless broadband system where we live its hard to keep it from dropping out,  but your blogs have been an inspiration to me.  I feel like I have come to know when your feeling down, and its hard to keep your spirits up.  Maybe sometimes you feel like me and  think you can defeat this illness and its not going to end up being the disaster we know is coming.   That’s why your article waiting at Heathrow or Deathrow, meant so much to me.   I have been trying for ages to try and put into words how I am actually feeling but finding words isn’t easy for me now.  So now I have shown my family your posting and it all makes it easier for them to understand .  As much as you can understand without actually being in our position.
As for me, I am 59 years old, married ( for 41 years) female diagnosed in February 2010,  after I had what we thought was a slight stroke, and I lost control of my right arm. I could move it but it really wasn’t responding to me and I was very unsteady on my feet and my speech had slurred.   I had a previous one a few months before but that had resolved itself but I had begun to lose parts of my ability to calculate problems, couldn’t follow a recipe and I was forgetting to for example hang out the washing which I had forgotten I had done.  My G.P. decided I had depression and was testing me for that, even though I was adamant I wasn’t depressed. I was also being treated for a stomach problem where the nerves around it weren’t working properly and couldn’t compress.  Now that had been put down to my condition. 
I was sent to a neurologist and had an MRI which showed diminished frontal temporal lobes and a few white spots which shouldn’t have been there, as well as Multi System Atrophy. Then he came up with CBGD, which I had never heard of, but he gave me a medical computer printout of the condition and said he was very sorry but that now I was on my own journey and that it was terminal,  but I thought that was ridiculous, I would prove him wrong but as the year has gone on and my symptoms have increased, I have accepted it and let my wonderful support team be there for me.
My support team consists of Disability services, which will supply any equipment I may need at home and a wonderful palliative care team ( which consists of doctors, nurses, and a physiologist) who all cater to my needs as they come up. ( All for free, because we have a great medicare system here ) . I have been to a Rehabilitation Centre where they taught me how do my exercises to keep my poor aching muscles stronger and strength training for my fingers which were becoming quite useless.  I also have a speech pathologist who will help me when I lose my ability to swallow correctly and I go to hydrotherapy once a week.   So as you can see I am being well catered for and I have my made an Advanced Medical Directive for my future treatment in writing so that my family doesn’t have to make any discussions for me which I know will cause them distress, because I dont want to have any medical intervention. No CPR, or peg feeding, or any thing that will prolong my life. 
I have had my DNA taken and I have donated my brain to the brain foundation.  So as you can see Ed, I am well prepared. I feel like now my bags are packed, my affairs are taken care of and I’m in that waiting room.  So now I am just waiting, waiting for the next symptom to arrive or for the next phase of my life.  Whatever that may be.
I have joined the CBGD Carers Support Organisation in America  on the internet and I find that very informative. I have posted a couple of times, but I feel like it then becomes about me, and carers have different feelings and concerns than I have and Robin who runs the forums always comes up with very informative information which I love to read.
As for my symptoms now,  I have trouble walking.  I have a wheelchair when we go out.  I couldn’t manage a walker because I have cognitive problems and I cant manage to coordinate everything.  I cant hand write anymore.  I was right handed but now I try to scribble with my left hand, and my right hand seems to wander a lot.  I have had trouble with night-terrors, waking up five times a night screaming, but my palliative care doctor prescribed Rivotril drops ( I dont know what there called in South Africa ) because she said I was having small seizures and the drops have helped me alot. I take Baclofen for muscle spasms, Moltilium for my stomach problems and it helps stop the nausea, when I get dizzy, and Pariet medication for Barretts disease. As well as PanadolOsteo for my general aches and pains.  My right eye gets very jerky at times, and I have trouble conversing with people face to face or on the phone,  however,  I can still type and I can still get my thoughts to paper.  Which is not bad for a person with a form of dementia. 
I forgot to tell you about my wonderful husband, John, who is now my carer.  He has gone from a person who couldn’t boil water to someone who now has to cook, clean, push me around in my wheelchair, wipes my tears, taken over all the household duties without complaint.  I don’t know how he does it.  He also had a triple by-pass three years ago so he also has that medication and problems to deal with as well.  I have an adopted daughter who is 25 years old now.  She doesn’t live at home any more she only moved out a few months ago.  She tries to deal with my problem as best as she can, but its hard to deal with.  Another wonderful family, the family of a friend of hers, has taken her under their wing,  and I am very happy that they include her in all their family, grandparents, uncles, aunties, cousins, so I wont  have her to worry about her, when I cant be there for her anymore.
Apart from all that Ed, and you said to write, give it to you all so I hope your coping alright with all my writing.   There’s a lot more information I can give you but you probably need a rest from reading and I definitely need one from writing,  but today I’m in a very happy place.   I feel like I have found  a friend in you, because I knew no-one with this disease before I started reading your wonderful blogs I love your stories and I love your pictures. So I really feel like I know you  well.  Thank you for taking the time out, of what seems like a very busy schedule, to write to me.
Take care
P.S. My palliative care psychologist, took a copy of your wonderful Heathrow article, after I showed it to her to let her know how I was feeling.  She said it was truly inspirational and would help her understand what many of her patients are going through.