I have no idea why this one got sent as an "attachment".  Probably because there were graphs and tables in it. Most likely, they will not show up with this copy either, but hopefully it will be posted regularly, and not as an attachment.

Kersty Franklin
John & Kersty Franklin, Proprietors
www.streambb.com
www.bbcanada.com/thestream
www.bedsandbreakfasts.ca/the_Stream.htm

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) 


----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn