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. 

 

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2 comments on “This Is No Micky Mouse Medical!

  1. So sad to learn of your physical state, Ed. Yet so wonderful to see the great attitude with which you bear it, and the humour with which you approach it. Thanks for sharing, buddy!!

  2. Hey Ed, the realities are harsh, and you are incredibly brave. I believe that when “that part” that controls your attitude was handed out, you were at the front of the queue! We have just been to Disneyland Paris with the family – was good to act like a kid again! Keep strong, the mojo will return.

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