This Is No Micky Mouse Medical!

Tuesday 25 October 2011: 5 years 1 month on … Advantage CBD

In 1975, at the age of 19, I visited the original Disneyland in Anaheim, Los Angeles,California,USA.

I thought and acted as if I was six!

It was just a one-day visit, but it was the most unbelievable experience.

At the time, I recall writing about it in my diary. Where that diary is I do not know – maybe one day I’ll find it in a box somewhere in the garage. I certainly hope so.

In January 1988, at the age of 32, I visited the much larger Disney World in Orlando,Florida,USA.

I thought and acted as if I was still six!

This time it was a three-day visit, but it was the most unbelievable experience.

In October/November 1999, I visited Disney World in Orlando again and attended a course at the University of Disney World.

I still thought and acted as if I was six! This time it was a ten-day visit, and it was the most unbelievable experience.

But, unfortunately, we don’t live in Disney. We live in a harsh world of cruel reality – the good, the bad and the ugly.

Sometimes it’s up, sometimes it’s down; sometimes it’s rough, sometimes it’s smooth; sometimes it’s sunshine, sometimes it’s rain; sometimes it’s laughter, sometimes it’s tears; sometimes it’s advantage ED, sometimes it’s advantage CBD.

Yes, it’s up today and down tomorrow. Hero to zero, they say!

We have witnessed, in the last few weeks, months and years, the downfall and demise of “world leaders” – amongst others, Hussein, Mubarak, Karadzic, Mladic, Ceauşescu, Gadaffi. Even our very own Thabo Mbeki

One of the rides in the Magic Kingdom is called “It’s a Small World”.

As you sit in your travel cart and traverse through the many wonderful routes and ends and countries and scenes of our planet, you hear the words of the song (ad nauseam maybe?):

It’s a world of laughter, a world or tears
Its a world of hopes, it’s a world of fear
There’s so much that we share
That it’s time we’re aware
It’s a small world after all

There is just one moon and one golden sun 
And a smile means friendship to everyone. 
Though the mountains divide 
And the oceans are wide 
It’s a small small world 

Another ride puts you in a cart designed to be a blood corpuscle. By means of the wonders of modern technology you get taken on a(n imaginary) ride through the highways and byways of the human body. You travel through the blood circulatory routes, the lymphatic system, the nervous system; you visit the various organs along the way and you just marvel at the intricacies and the wonder of the human body.

I thought that today I should take you on a tour of my body, not because I want you to feel sorry for me, but because I am often asked,  “Now tell me honestly, just how do you feel? … But of course, you look so good …!”

It’s a sort of State of the Nation address. (And, please remember, this state does not remain constant: it varies considerably from day to day and from hour to hour. It improves with peace and quiet and regresses with stress. It gives and it takes … until it leaves you with no more.)

Let’s start at the toes on the right leg and move up.

Everything here is fine – no traffic jams, no congestion, no accidents, no pile-ups. It’s all free-flowing traffic.

The left leg is very different though. The toes are constantly spasming (if there is such a word!) and curling up downwards and inwards. Like a spring that has lost its attachment points, the calf muscle contracts and the leg wants to rest in an L-shape bent at the knee. Any other position is uncomfortable. As the brain loses control over the muscles, they keep on contracting more and more.

Between the knee and the hip there is a constant feeling of pins and needles. The strength in the leg is decreasing and it sometimes just wants to give way underneath me. When walking, it resists being lifted and wants to drag along behind me. Consequently, my limp is becoming more pronounced. My left leg has over-taken my left arm in becoming my most affected limb.

Moving upwards, the bladder is affected and has obviously, like the muscles, lost its elasticity. It fills and doesn’t empty properly and is prone to infection.

Oh shoot … I have to go again …

… and again …

At least, I get to sit down on the throne and have found it the best place to sit. Because the gluts in my left buttock are atrophying, the act of sitting becomes more uncomfortable. But, a toilet seat works well, so I’ve taken to sitting on a portable covered seat, and that works … at least for the moment!

From bum to chest: My diaphragm and lungs are weakening. I am breathing shallower than before and get out of breath quickly.

Now, let’s do the arms and hands, going down the right side first. My right arm is about a year behind the left side as far as the regression is concerned. All that is visible is the wasting away of the muscles, especially in the hand and fingers, and the curling up of the fingers (just like the toes!) However, despite the very slight tremor, I can still control my right fingers.

Sometimes, it becomes difficult to lift my arms, with the left side being much weaker than the right side. The left fingers (where it all started!) are the worst, with very little voluntary controlled movement left. The ring finger, like the corresponding toe in my left foot, is the very worst. The tremors in all the fingers have become more visible. The muscles are wasted. The arms want to rest crossed on my chest.

 My left arm is difficult to lift and to move from point to point. It often needs the guidance and support of the right arm. Bear in mind that I am left-handed, so the effect is even more pronounced.

For the first time, this week, I have experienced just a little pain in the upper arm.

My shoulders are drooping and curving in, together with my upper torso.

Swallowing becomes more affected. Last week, a humble little pea got stuck in my throat. I thought I was going to die, but, eventually, the pea was coughed out! I’m going to have to learn to eat slower and chew better.

Then there’s the eyesight. My depth of perception is affected and stairs especially pose a challenge.  I have to look increasingly downwards to negotiate walking. My eyes are also taking time to adjust from far sight to near sight. From reading a book to watching the TV (or vice versa) takes a while for the eyes to adjust.

Eventually there’s my brain – the various parts of it: some working and some not!

This is the seat (?) of my problem. The manufacturer of the dopamine has gone on strike and production is limited and affected – as are the departments that control my short-term memory, my ability to plan and sequence, my temperature gauge, my sense of taste and smell, and my ability to absorb and execute instructions, and to spell and work with figures.

There is a pall of haze that hangs over my head – whether from the disease or from the medication. It’s like being in a constant state of hangover (not that I would know, but I’m told that’s how it feels!!) Sometimes, like a morning mist, it burns off and lifts for a while – what a gift to enjoy.

The more those parts of the brain in charge of the above regress, the more “that part” which controls me and my will-power has to be strong, resolute, firm, determined and unwavering.

“That part” has also not been working all that well over the last two weeks.

 But, we’ll get there again. 


Give That Man a Bell’s!

20 September 2010: 4 years on …

Where were you on New Year’s Eve of 31 December 1999?

It is one of those “things” that most people remember, together with “where we you when: Lady Diana was killed, the Twin Towers fell, the Oceanos sank off East London …?”

We celebrated the birth of the year 2000 together with Lesley and (now the late) Brian Cooper and their family and friends at a house party in Walmer, Port Elizabeth.

Yes, it’s difficult to believe that it’s now more than a decade ago that the world celebrated the birth of the New Millenium.

It was also ten years ago, in October 2000, that I accompanied a group of some 100 Pick ‘n Pay employees to Disneyworld in Florida, USA. It was my third visit to the fantasy world of a Disney kingdom.

In 1975 (as an exchange student), I visited the original Disneyland in Anaheim, Los Angeles, California. In January 1988, Grant Lloyd and I spent three days visiting Disneyworld and the Epcot Centre in Orlando, Florida. We had flown to Orlando from New Orleans, and then, after our visit there, flew on to Fort Lauderdale and then rented a car and drove down through the Florida Keys as far down south as Key West.

This visit to Disneyworld was different though.

This time we were students. We attended a course in Customer Care at the University of Disneyworld (!) We “worked” by day and partied by night!

Classes started at six in the morning, followed by breakfast, and then, private entry into the park itself, to experience the Disney way of caring for customers. We saw and experienced all the nooks and crannies of Disneyworld and the other theme parks as most people never do.

In the evenings, we partied at Pleasureland – that island part of the family orientated Disneyworld that is reserved for adults only. Often, we would barely get home in time to start off the next day’s classes!

It was ten days of heaven – all expenses paid!

On our way home to South Africa from Orlando via Atlanta, I stayed on in Atlanta. There, I visited my American “family”. “Mom” Nadine and “Dad” Whitley – my exchange student parents – had come from Missouri to visit my “brother” Kevin and his wife Carol and their family who lived in Atlanta. I spent a few days there with them, and that led to our whole family going back to the USA a year later in October 2001, just ten days after 9/11! (Read my previous blog 9/11.)

During my stay in Disneyworld, I had started experiencing strange pins and needles feeling in my left arm.  Upon my return to SA, a MRI scan revealed a herniated disc in my neck, and that resulted in surgery whereby the disc was removed and bone grafted from my right hip and inserted in between and fused with two vertebrae in my neck. The neurosurgeon, Dr Botha, had warned at the time that this degeneration of discs may happen again.

And so it was that, four years ago, in September 2006 that I once again experienced that tingling feeling in my arm. (Hence, the timer that runs above my blogs that now indicates four years on!)

It was also my birthday weekend, and I was about to celebrate my 50th! Sean and I had accompanied Andrew Kettlewell  (from Andrew’s Plumbers)and Gary Webb on a hunting weekend to Kirkwood. Andrew and his family had decided to emigrate to Australia and this was his last weekend in Africa. He had decided to spend it under the African skies and invited us to join him.

At work, I started experiencing problems with using my left hand to type on the computer. I thought it was a dreaded disc causing problems again, and we tried all kinds of things to make my computer and screen more comfortable.

Eventually, in October I saw Maree Moolman, the chiropractor. That didn’t help, so on to the physiotherapist, Denzil Witthuhn. That didn’t help! Then the neurosurgeon, Dr  Botha, again, and more x-rays and a MRI scan.

Unfortunately, this time, the scan did not reveal a herniated disc. It appeared to be something more sinister . . .

In December, I was referred to the neurologist, Dr Britz. After numerous tests, he advised me that he was of the opinion that I had what he referred to as an extra-pyramidal Parkinson’s disorder. He arranged for me to see Prof Carr, head of the Neurology Department at the Stellenbosch University Medical Faculty at Tygerberg  Hospital in Cape Town.

My first flight to Cape Town proved to be a wild goose chase. Upon arrival at Tygerberg, I was informed that Prof Carr was overseas, and they quickly arranged for Dr Franclo Henning to do a quick assessment.

I returned to PE empty-handed! It was only when I returned at the beginning of February 2007 to see Prof Carr that I was diagnosed with CBD on 8 February 2007.

And so, it took six months from the time the symptoms first appeared until the diagnosis was made. Prof Carr had informed me that it was a possibility that I had some three years left before I would become severely incapacitated, and possibly a further five years before I would die from pneumonia.

He also appended a caveat – that possibly I would be able to come back to him in five years and sue him for an incorrect diagnosis! The difficulty with neurological illnesses is that it is impossible to make definite assessments without opening the brain and scratching around! It’s like taking your car to the garage and asking them to tell you what’s wrong with the engine, but not allowing them to open the bonnet and actually look at the engine!

Whilst you are alive, they simply look at the symptoms and categorize the illness. It is only on the completion of a post death brain autopsy that a definite assessment can be made. Various studies have revealed that in more than 50% of diagnosed cases, an incorrect diagnosis was originally made, and that the person had another neurological illness such as ALS, PSP, MS, Alzheimer’s, etc. There are so many of these illnesses that most healthy people have never heard about!

And so, this past weekend, I celebrated my “normal” birthday as well as my fourth with CBD. Friday night, thanks to Gary Hemmings, we saw Gino Fabbri’s show NUTS, Saturday evening we celebrated Anthony Bowes’s 50th (we share a birthday) and Sunday, we braaied with some erstwhile school colleagues.

Last year, this time, I set new goals. A new one was to celebrate Sean’s leaving school and all that goes with that. These things happen during the course of the next few weeks, and I am fortunate to still be able to participate in all those activities.

In the meantime, I am grateful for another year, for all the good wishes and encouragement that I received this weekend and for the family and friends that celebrated with us.

It was on Friday afternoon that Ed and Eddie (Terblanche) went for a pre-birthday celebratory drink at Dagwoods. The barman was told: “Give that man a Bell’s!”