Ciberman Reporting - Part 1

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The diagnosis

In 1990 John was diagnosed with Parkinson's disease. He comments,  "Like most 
people I had no real knowledge of such ailments, and hoped I'd never have to 
find out. I avoided illness "like the plague".

 

There is no doubt that John's Parkinson's disease makes life a little trickier 
for running the Bed & Breakfast but not nearly as difficult it would be without 
the benefit of modern medicine and surgery. This debilitating illness is not 
without its compensations. It adds to your enjoyment of the small things in 
life and appreciation of the times when you are feeling well. Also, 
surprisingly a worse problem by far has been defective speech caused by a 
stroke I had while being operated on for Parkinson's. It seems that sounding 
clear is more important to people than one might expect. The Internet has 
proven a major asset allowing me to communicate freely with my friends. This 
was the medium that brought Kersty and I together which is a never-ending 
source of wonder to me.  

 

It took a while to correctly diagnose the cause of my backaches and dizziness, 
the first Parkinson's symptoms in my case. After going the rounds of my GP, 
physiotherapists, chiropractors, and others, a slight left hand tremor 
eventually rang a bell with a Brampton neurologist. Even then the diagnosis was 
uncertain. There's not yet even a diagnostic test. With distinct lack of 
bedside manner I was told "try taking this yellow pill, if it does you any 
good, you have a problem". My local pharmacist looked upset when I passed 
across my prescription, and feeling more than a little anxious myself, I asked 
him and was told what it was for.

 

As it turned out, my problem wasn't about to go away with massage or 
medication. Questions followed thick and fast, and I was soon enlightened on 
the general nature of the disease (to appreciate the finer points takes 
longer). This debilitating condition doesn't usually kill you, but nor is there 
a cure. Statistically at least, it knocks several years off your life and makes 
an incredible chore of tasks as routine as walking, shaving, speaking, 
sleeping, and eating.

 

I had no idea of what was about to hit me. Leading a busy life during my final 
year of health, I taught and supervised research at the University of Waterloo, 
ran a geotechnical consulting business and instructed skiing at the two Hockley 
Valley clubsOckleyHockley. In my spare time I ran a bridge club in Shelburne 
and finished writing two textbooks and a steady stream of research papers and 
consulting reports. As the first Canadian to be elected president of the 
8,000-member International Society for Rock Mechanics, I did my best to 
contribute something rather than just enjoy the ride. I completed a 
wall-to-wall modernization of this fusty organization, which up to then had not 
even a computer to its name.

 

Increasing dosages 

Parkinson's put paid to all of that, also my wife chose this time to quit a 
less than perfect marriage. I'm not sure how I survived the dual whammy, but 
strangely even the act of surviving brings its own rewards. You get to explore 
the limits of the human mind and body. When it's simply a choice between sink 
or swim, you really have no option but swim.

 

The drug Sinemet (more recent medications don't work half as well) has limited 
to some extent my shaking, freezing and muscle rigidity, allowing me even to 
continue with a little skiing and golf. The drug doses, however, have mounted 
to a poisonous twenty-five pills a day taken in batches every three hours. Just 
to illustrate one of the more trivial side effects, my bodily fluids have 
assumed the colour and pungency of a pack mule's. 

 

 

 

Bionic man

So I didn't hesitate when offered the chance to try a new type of brain 
surgery, deep brain stimulation (DBS) that with any luck will cut the dosage in 
half while greatly relieving the symptoms. I know the first steps of this 
operation intimately, being identical to those of my earlier operation that 
left me speechless. It all starts with admission to hospital at the uncivilized 
hour of 6 a.m., and continues for about ten hours. A bench-clearing brawl of 
technicians screw to your scalp a metal frame. In spite of the local anesthetic 
it's an uncomfortable if not painful procedure. Then you're trundled into the 
MRI (magnetic resonance imaging) machine, which clanks and whirrs while 
measuring precisely the position of this crown of thorns relative to your 
brain. In the operating theatre you are greeted by Anthony Losano, 
neurosurgeon, and his retinue of assistants, nurses, students and others. He 
attaches a knitting-needle-like probe by micrometer to your head frame. As the 
probe penetrates deeper it picks up electrical signals from the brain and 
transmits them over a loudspeaker in the operating theatre. Awake and alert 
throughout this, you can hear the electrical storm responsible for your muscle 
tremor become louder and more persistent as the probe approaches its target. 

 

In DBS, the probe wire with its four electrodes is implanted first. About a 
week later, in a second operation, this time under general anesthetic, the 
probe wires are taken beneath the skin from your head to your chest, where they 
are connected to a stimulating device rather like a heart pacemaker. 
Programming the electrical signals may take up to 30 additional hours in 
hospital, in 2-3 hour sessions. Since this is all experimental, luckily neither 
you the taxpayer nor I have to foot the bill. There's a nominal $100 fee for 
the surgery, payable to the nurses association

 

Worth the risk

Nobody seems to know how deep brain stimulation works, but by all accounts the 
improvements are dramatic. Also the procedure should be safer than my 
unfortunate palidotomy four years ago. The palidotomy destroys brain cells (by 
heating them), whereas DBS relies on intercepting the signals themselves, 
leaving your brain cells undamaged.

 

I was one of the very few patients who experienced serious side effects, but 
that was just bad luck. I still have every confidence in Dr. Losano who's to be 
my surgeon again on the 18th August. 

 

I got back from the hospital only this afternoon (that was last Friday), and 
now that I have been "switched on" and "tuned in", I can walk again almost like 
normal, and even the remaining symptoms (occasional tremor of my right hand 
etcetera), promise to be corrected by further optimization of the electronic 
programming (see below). The possibilities are almost endless, since they have 
a number of variables to play with including the combination of electrodes that 
are energized, the polarity of the pulses, the pulse width and amplitude. There 
must be more of these possibilities than the number of drugs I am taking, so 
the electrical "treatment" is as versatile if not more so than the clinical 
(drug) program.

 

Was it worth it?

Too darned right it was. Although the operation was no cakewalk, and even 
something of a nightmare (see below, again), the results are quite spectacular. 
I'll no doubt send you a periodic update briefly summarizing the effects on my 
golf game and skiing which I can now resume at "Cedar Highlands". Basically, I 
can now walk again without stumbling and "freezing" every second step.

 

I am back in the swim again. According to Eppy, my stalwart Scottish 
nurse-programmer (you really should get a photo of her and of some of the 
others who continue to contribute to the recovery of so many, day after day), 
my recovery was above average, and you will see from the diagram below (from a 
1997 article in "The Lancet" by the French-German pioneers of the treatment), 
that the average improvement after DBS is itself not just "statistically 
significant", a term I find not too helpful and have never really understood, 
but "pretty bloody spectacular".

 



 

 

The operation 

I'm a bit reluctant to talk about the operation in case I might put off even 
one person who might otherwise go through it and thereby benefit so 
considerably that the actual ordeal is forgotten. In my own case, although the 
hospital offers a list of names and phone numbers of people who've had DBS and 
are willing to talk about it, I refrained from calling anyone who had had the 
operation specifically to avoid being put off. I'm a big time coward and might 
well have seized even the feeblest excuse to withdraw my name from the 
(six-month-long) waiting list. As it was, I took Eppie's word for it, and that 
of Jan her predecessor nurse.  Both are thoroughly familiar with the results, 
have no axe to grind, and strongly recommended that I give it a go.

 

Nevertheless, the operation is a very necessary part of the whole shebang, so 
can hardly pass without mention. Also, it's not really that bad.

 

Let me refresh your memory, the whole procedure is in four distinct parts: 1) 
the operation to install the electrical probe implants; 2) the follow-up 
operation to install the electrical pulse-generators, one in each breast, 
connected to the probes by wires passing under the skin behind the ears; 3) the 
"programming" (turning on and tuning in) which makes it all worthwhile, and 4) 
the "fine-tuning" which irons out the wrinkles that develop over several days 
or weeks of using a stimulated brain.

 

 

Probe implants

Incredible though it may seem, they actually take people in on the day of the 
operation, and discharge them a day or at most two days later. Brain surgery is 
apparently not so traumatic as some other kinds, and you recover quite quickly. 
 However, I was not thrilled at the prospect of getting driven to Toronto 
Monday morning in time to check in at 6 a.m. for an MRI scan at 7 a.m. and an 
operation at from 8 to about 6 p.m. You are not allowed any anti-Parkinson 
medication on the day of the operation, and have to remain alert to respond to 
questions and tests to measure your reactions during and after the operation. I 
may perhaps be excused for thinking that the very least Mike Harris could grant 
me was a decent night's sleep before going through a full day wide-awake 
operation.

 

I had forgotten, when we last spoke, how incredibly uncomfortable the first, 
clamping and MRI mapping, part of the operation could be, or perhaps they had 
changed the procedure to make it more arduous. Anyway, the preparatory work of 
injecting local anesthetic into your scalp, then clamping a titanium frame to 
your skull was no cakewalk. And then to have to lie there uncomplaining and 
motionless while this admittedly wonderful machine whirrs and burps and scans 
your brain with this frame contraption attached, enough times to satisfy the 
research engineers as well as those concerned with your health, was a bit much. 
 I consoled myself with the thought that better they know in advance exactly 
where to insert the probes than cut short the whirring and burping and perhaps 
stick them out of my left ear. I think they had changed the places they clamp. 
Anyway, my head felt like a walnut in a nutcracker. 



(Part 2 follows in next email) 


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