Candle in the Wind

Monday 7 February 2011: 4 years 5 months on …


Jesus bids us shine
With a pure, clear light,
Like a little candle
Burning in the night.
In this world of darkness
So let us shine
You in your small corner,
And I in mine.

Jesus bids us shine,
First of all for Him;
Well He sees and knows it,
If our light grows dim.
He looks down from Heaven
To see us shine
You in your small corner,
And I in mine.

Jesus bids us shine,
Then, for all around;
Many kinds of darkness
In the world are found
Sin and want and sorrow;
So we must shine
You in your small corner,
And I in mine.


The 21st Century and the New Millennium came with great trepidation and expectation.

 What would it bring?

 In my case, my neck collapsed and 2000 AD saw me in a neck brace and surgery to repair a herniated disk in my neck with bone from my hip.

 In 2001, the Twin Towers of the World Trade Centre in New York City came tumbling down.

 And, if I thought that was a crash, then in 2002, our whole world fell apart when suddenly, overnight, I found myself jobless and out on the street.

 The next four years saw many hours and days of hard work and slogging, rebuilding my life around a new consulting business. But, just as that business started taking shape, the tremors of 2001 and 2002 proved to be but the foreshocks of the main seismic event that was to come.

 In September 2006, just days before my 50th birthday and after having spent hours behind the computer finalizing accreditation documents for our new Company, I realized that my left hand fingers were not always pressing the right keys on the keyboard. That, together with a strange tingling sensation in my left arm, brought me to think that I was having a recurrence of the 2000 neck collapse.

 The next five months saw me visiting the doctors, the chiropractor, the neurosurgeon, the neurologist and the hospitals for MRI and CAT scans.

 In December 2006, I was given a drawing and a description of the possibility of what was called an extra-pyrimidal disorder. Confirmation would be required by undertaking a trip to Cape Town.  


A first trip in January 2007 to Cape Town’s provincial and the University of Stellenbosch’s academic facility, the Tygerberg Hospital, proved unsuccessful when upon arriving there, it was discovered that the Professor of Neurology was overseas.   

 Another trip was arranged.

 And so it was that tonight, exactly four years ago, on 7 February 2007, I found myself in Cape Town once again. The next morning, 8 February 2007, the diagnosis was confirmed: I was told that I had corticobasal degeneration, and that I would become severely incapacitated within the next three years, with death expected from pneumonia within about 5 years. I was given a handwritten note so that I could remember the name of the illness. I remember very little of the rest of that day as I sat at Cape Town’s International Airport waiting for my flight back to Port Elizabeth and my family.

I was later to discover from the internet that CBD was like a burning candle, melting your muscles and leaving your body a pile of wax. It begins on the one side of your body and then works its way across. As it gives more of itself, it takes away more and more of your abilities – your ability to walk, balance, talk, think, swallow and use your hands. And, by the end, your brain is awake and imprisoned inside that limp pile of wax and you become a person frozen inside your very own flesh.

 All of this could take no more than five years from that day, 8 February 2007.

 And so last year, round about this time, after my first fall and breaking my elbow on my “good” side, I decided to be ‘clever’ and to save time and to respond to my family and friends by writing an omnibus email in order to update them on my condition.

 What started as a time-saving device has become an almost fulltime “occupation” – the emails grew into notes to my friends on Facebook and then into the public domain on a blog site Brainstorms on WordPress, and into the AlgoaFM radio programme, ED is in wED, together with Lance du Plessis. Today, on the eve of my fourth “birthday”, and thanks to Online Innovations, the website went live on the internet!

 As I write this note tonight, that blog site (only 11 months old) has just passed 17 000 hits – many readers who, like me, four years ago, had never heard about an illness called CBD.

 I am truly humbled that, by sharing my diary with you over the last year, an awareness has been created about illness and despair and the ability of the human spirit not only to challenge and meet and rise above these obstacles but also to accept that as humans we are not always towers of strength and sometimes it is perfectly good enough to just fall apart.  

 As I enter Year Five and my candle continues to flicker in the wind, I am only too grateful to you, the reader, for your continued support and encouragement to share my honest, humble, sincere and simple account of my ever-increasing difficult walk with CBD – my very own walk to freedom.

 “With all its sham, drudgery & broken dreams, it is still a beautiful world. “

Conversations Down Under (2)

E-Mail Conversations with Alison Bevon – CBD Survivor South Australia 

4 February 2011

Dear Ed,
Sorry to hear about your wiring problems on your blog.  You explained that so well. 
I admire you so much for  being able to communicate so well.   Its very confronting to see your medical problems in print but what you do is so helpful to people like me, suffering this horrible problem and also for the general public, who really don’t understand what CBGD is.  My husband thought your blog was very helpful and we both had a laugh at the end of your article. 
I, too have had an awful week.  We have had so much humidity here this week, and I suffer horribly in the humidity.   I feel like I have a muscle and brain meltdown.  Nothing works together.  I have to have the air conditioner on all the time to make me feel a little better. 
I hope my last email wasn’t too confronting for you and your readers.  I tend to forget that some people have different views regarding end of life issues and I would hate to think that I caused you or your family any distress.   My husband took awhile to accept my decisions, but he has accepted them now and I know he will not go against my wishes and even he was the one who suggested that I donate my brain for medical research after death.  So we researched that together and made all the arrangements and I feel so much better knowing that I have done something to help other people with this disease and also because my Mother died from the same symptoms as I have now. 
She  was diagnosed with Miniers disease when she was in her fifties and had regular bouts of dizziness and nausea.   It wasn’t until she was 75 that they realized she was having seizures and it wasn’t Miniers disease,  by then she was also diagnosed with dementia and a few weeks before her death, her right arm was wandering up and down, she couldn’t talk, walk or swallow.  So, I believe she had the same symptoms as I have but she wasn’t diagnosed properly.  She didn’t have an autopsy.  I wish she had, it would have answered a lot of questions.
 So that is why I had my DNA taken, so the family can keep track if any more of us come down with similar symptoms.   They did find an variant of uncertain significance in the PGRN gene. They were only checking for frontotemporal dementia and it should become clearer in the next few years whether this is related.  Although you don’t seem  to  have  dementia because you write and speak so well.  Do you any have cognitive problems?  I hope you are one of the lucky ones to escape that part of this disease. 
I wish you well Ed, and I hope the doctors have helped you with your medication.  Look after yourself and try not to get too hot or too tired. 
Thinking of you