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.

That’s COOL!

Tuesday 25 January 2011: 4 years 4 months on …

Yesterday, I went for my annual checkup (report back?) to the neurologist. I will disuss that later, because right now I am very excited and very humbled.

I have always said that the more you give in this life,the more you get back. And today has been no exception.

Lance du Plessis – my host at AlgoaFM for “ED is in wEd”, and the star of the show! – often jokes about the fact that the CBD has taken away my ability to feel the cold (as it has my sense of smell and taste).

Temperatures below freezing were my saving grace when I recently visited England and Ireland (read ED is in EnglanD and ED is in irElanD). I can walk around in shorts and a t-shirt and not feel the cold. Sean and Phillip even bought me a thermometer last year so that I could read the temperature and dress accordingly!

(Howver, I have to be careful because eventually the progression of this disease will lead to my dying from pneumonia. Right now, I am battling to get rid of a lung infection, and the antibiotics seem to be helping!)

 But the heat catches me. It washes me out and makes me extremely weary. I battled with the humidity and heat last week, and after leaving the AlgoaFM Studio, I stopped in at Cool Projects at 286 Walmer Boulevard to disuss the practicalities of an air-conditioner.

On Friday, Lindsay Caine, the sales rep, came to see me. We discussed the requirements, the practicalities, the positioning and the cost. Eventually, with a family discussion we decided that the main bedroom would be the appropriate place, as that would become my “home” as the CBD winds its wieldy way, and restricts my movements.

Today, Lindsay phoned me to inform me that her boss, Victor Pretorius, and Cool Projects, together with AlgoaFM, had agreed to sponsor the provision and the installation of an air-conditioning unit in our main bedroom!

How’s that for being Cool?

I am excited, I am grateful, I am thankful, I am so very humbled.

LG – Life’s Good 


Stop Worrying
(Luke 12:22-34)
25“That’s why I’m telling you to stop worrying about your life—what you will eat or what you will drink[k]—or about your body—what you will wear. Life is more than food, isn’t it, and the body more than clothing? 26Look at the birds in the sky. They don’t plant or harvest or gather food into barns, and yet your heavenly Father feeds them. You are more valuable than they are, aren’t you? 27Can any of you add a single hour to the length of your life[l] by worrying? 28And why do you worry about clothes? Consider the lilies in the field and how they grow. They don’t work or spin yarn, 29but I tell you that not even Solomon in all his splendor was clothed like one of them. 30Now if that is the way God clothes the grass in the field, which is alive today and thrown into an oven tomorrow, won’t he clothe you much better—you who have little faith?266
31“So don’t ever worry by saying, ‘What are we going to eat?’ or ‘What are we going to drink?’ or ‘What are we going to wear?’ 32because it is the gentiles who are eager for all those things. Surely your heavenly Father knows that you need all of them! 33But first be concerned about God’s kingdom and his righteousness,[m] and all of these things will be provided for you as well. 34So never worry about tomorrow, because tomorrow will worry about itself. Each day has enough trouble of its own.”

Over The Hill

Monday 24 January 2011: 4 years 4 months on …

My late father had a stroke in 1969 which left him completely paralyzed on his right side and unable to talk (save for 3 or 4 words). At the time, I was in Standard 5, my eldest sister Lyn in High School (Standard 8), my younger sister Ingrid in Primary School (Standard 1) and my youngest sister June, at 4 years old, not yet even in school.

My late mother had her hands full, looking after a disabled husband and raising four children!

After his stroke (and until he passed away in 1976), we never had the luxury of a holiday. Mind you, before his stroke we seldom went away on a holiday either.

There is one holiday, however, that I remember well. Our green Studebaker towed a Gypsy caravan (the silver variety) from The Strand north to Bloemfontein, south to East London and then down the coast, visiting Port Elizabeth, Jeffery’s Bay and Knysna along the way. (It was in Bloemfontein that my Dad left a message for a friend that Herbie Lunnon was in the caravan park, and he almost did not get to see the friend because the message was relayed by the secretary as “Herbie’s linen was in the caravan park”!)

Whenever we traveled, we never stopped at restaurants for meals. In fact, I don’t think that places like the Wimpy, Golden Egg or Steers existed in those days (or maybe we just couldn’t afford to stop there!)

Instead, Mom packed the picnic basket (a large brown cane one with a lid) and inside was the black metal flask with coffee and the drumsticks, hard-boiled eggs, fried sausage, and sandwiches (mostly wrapped in the obligatory silver aluminium foil).

We would stop along the national road at the concrete table with the concrete stools, usually under a few trees that had been planted there for shade, and the concrete bin for the throw-away rubbish. A meal stop would include the obligatory wee stop and the waves to the passers-by.

But before we stopped, we would play all kinds of games in the car to keep us busy and designed to prevent us from fighting. The wireless would either be on the “A” programme (the English SABC programme, as opposed to the “B” programme – Afrikaans) or on Springbok Radio, and one had to constantly keep turning the dial in order to keep the wireless on the programme – often the sound would just fade away into a rowdy static racket!

And in between the stops we would constantly ask “How much further?” or “When will we get to Three Sisters, or Colesberg or Hanover or …?” 

Something I learnt from my Dad (Things my Father said!) and which has transferred itself into our own family travels, was his usual reply, “Round the next corner!” or “Over the Hill!”

But our destination was never over that hill or round that corner, to which Dad would reply “I said the NEXT hill!”

And the reason I have been thinking of this is because it reminds me that in Life we never know what lies around the corner or over that hill. And we just don’t know how much further we have to travel.


But we need to stay busy with our radio and our games to keep us from fighting, and we need to have our short-term and long-term goals like our regular stops, our next corner and next hill and our next town to make the journey more exciting.

During these past holidays, we stayed on the St Francis Links for a week or so. Not being a golfer myself, I watched the players pass by on their golf journey.

They start their course and play eighteen holes. Each one comes with its unique built-in challenges and the ever-changing wind and weather patterns.  They have to adapt each stroke by assessing the challenge and choosing the correct club, often with the help (for better of for worse!) of their companions, and by playing the stroke with the necessary acumen.

However, the play doesn’t necessarily go (and seldom goes!) according to the plan. Often your ball is lost and your way is lost and frequently a standby plan or improvisation needs to be implemented in order to get you out of the rough.

In my case, as the CBD relentlessly attacks my body, I progress from one hole to the next, and each time a club gets removed from the bag. As I proceed, I have fewer clubs at my disposal to master each succeeding green, and the round becomes more and more challenging. How many more holes I do not know, but the respite of the 19th hole lies somewhere there in the distance.

As I said, I was never a golfer, but I have run the Knysna. And it’s become like running the Knysna.

You don’t know if it’s the half marathon or the full, but you become increasingly tired along the way and I am starting to feel over the hill.

I keep on watching out for that finishing line. How much further?

Is it around the next corner or over the hill? Is there a next one?

Packing Up

Monday 17 January 2011: 4 years 4 months on …

Those of us who are privileged to live at the coast are only too familiar with tides.


Twice a day, every day, the tide flows and the tide ebbs. The water rushes in and crashes against the seashore, the level rises by many metres and it fills up every nook and cranny that it possibly can – and then, it all rushes out, disappears, leaves a few puddles here and there and large stretches of wet sand. Some six odd hours later, the whole cycle repeats itself.


Each of these events in the tidal cycle has a special beauty and uniqueness of its own.


Similarly, those of us who are privileged to live at the coast are only too familiar with the people tides.


Once a year, every year, at Christmas time, thousands of people from all over the country flow into our coastal towns and then leave. They rush in, crash against everything, raise the population levels by many thousands and fill up every nook and cranny that they possibly can – and then, they rush out, disappear, leave a few reminders here and there and large stretches of sand for those left behind to enjoy.


Each of these two events in the people cycle, too, has a special beauty and uniqueness of its own.     


We, as a family, are extremely privileged to be at the coast all year round – we simply move the 100 odd kilometres from Port Elizabeth to St Francis Bay.


We see both the City and the Village experience their annual flow and ebb and we experience the beauty and uniqueness of each.


And so, for the last five weeks, we have had the privilege of holidays, sea and sun, family and friends, sleep and relaxation, Christmas and New Year, beach and sea and river, and as we say in South Africa –  braaivleis, sonskyn, rugby (krieket?) en Chevrolet!


But, all good things come to that end, and so, this past weekend it became the time to pack up in the Village and return to the City. The summer holidays have ended and the time to work and study is about to begin.


For Pera and Phillip, it is back to school; for newly-matriculated Sean, it is a new beginning at the Nelson Mandela Metropolitan University (to study marketing) and for me, the challenges of 2011 and CBD. Will this be the year?


Behind us, in St Francis Bay, we leave the blankness of those magnificent white houses, standing empty for the next eleven months, but still glistening in the bright sunlight. Every piece of dark thatch has a white capping – they are a practical example of the saying that every dark cloud has a silver lining!


Collectively, the houses with their black thatched roofs and white capping look like a box of giant Oreo biscuits.


Individually, they remind me that, paradoxically, even in emptiness there is fullness; in nothing there is beauty; in quiet and solitude there is the promise of a new beginning; and in Death there is Life.


Ecclesiastes 3:1-8
From The Holy Bible (King James Version)
Attributed to King Solomon

To everything there is a season, and 
a time to every purpose under heaven: 

A time to be born, and 
a time to die; 
a time to plant, and 
a time to pluck up 
that which is planted; 

A time to kill, and 
a time to heal; 
a time to break down, and 
a time to build up; 

A time to weep, and 
a time to laugh; 
a time to mourn, and 
a time to dance;

A time to cast away stones, and 
a time to gather stones together; 
a time to embrace, and 
a time to refrain from embracing;

A time to get, and 
a time to lose; 
a time to keep, and 
a time to cast away; 

A time to rend, and 
a time to sew; 
a time to keep silence, and 
a time to speak; 

A time to love, and 
a time to hate; 
a time of war; and 
a time of peace.