By comparison at least, the actual probing was no problem. Even if it was a no-no to put you right out, an anesthetist was in attendance to monitor your vital signs and feed you a little numbness, and to keep you amused by quips. Also different from my palidotomy operation (right brain only), there were to be two of everything, one set of electrodes implanted on the left and another set on the right. They drilled two "burr holes" left and two right, and then inserted the probes, checking at each increment of penetration to make sure you were experiencing no discomfort until they had reached the full required depth (in the subthalmic nucleus, which is just about the deepest part of your brain). Next they inserted the electrodes and withdrew the probes, four electrodes per probe, one above the other at intervals of about a millimeter on each side. They connect these temporarily to an external pulse generator and feed small voltages to make sure that at least two or three of the electrodes are in about the right place (your tremor slows or stops when the voltage is applied).

 

Then they seal, sew and staple everything up to make sure it doesn't shift around during an initial night's sleep in the recovery ward. The next day, back to the MRI room where they re-scan to make sure the probes are in the right place, and to research your reactions to a more extensive suite of electrical signals. 

 

It used to be `Nuclear Magnetic Resonance Imaging in the good old days (about 20 years ago when it was invented), but they dropped the Nuclear`` because there were too many folk out there who got nervous at the word `Nuclear`. Presumably they thought it might be something to do with bombs. Sad comment on today's society that you cant be literate enough not to associate nuclear with bombs.

 

After a week of recuperation, back to the theatre, where they put you under general anesthetic, implant about US $10,000 of electric pulse generator in the upper part of each breast, and connect the pulse generators to the electrodes, 

 

No problem there, you wake up to find everything in place and the whole shebang neatly packaged and sewn up better (by far) than your best-prepared Thanksgiving turkey.

 

The waiting

Then off home to the tranquility of the Hockley valley to recover for about two weeks. Dr Price removes my stitches and staples after a few days. I'm not supposed to touch my head - risk of infection - but it feels itchy and I scratch. Discover a hard lump behind my left ear that feels just like a loop of wire sticking out.  I have visions that they might not have sewn up the turkey quite as well as planned. My "wire loop" scenario was sufficiently plausible to get the surgeon Dr Lozano on the line. He suggests it might be a staple. Sure enough, the following Monday I go back to Dr. Price who confirms and removes an errant silver-coloured staple concealed in my white hair, which (in this very limited part of my head at least) is quite prolific.

 

Something of a letdown during the two-week convalescent period. Not much to show except scars from the operation, and of course with nothing switched on, hardly any improvement over my pre-op condition. Had all these trials been for nothing?

 

Amazingly enough, there are some slight improvements in tremors and freezing even before being switched on, just from the presence of the holes and wires in your head, I guess.  The latest theory is that Parkinson's disease is caused by oscillations in a stream of neurons in the lower part of your brain. DBS somehow zaps these neurons, damps the oscillations, and jams the signals that cause the tremor and freezing. They don't really know yet how this works, or what are the causes, but my impression is that this won't be for long.

 

This waiting period is the worst possible time for your friends and caregivers. All the scars and stitches must appear agonizing (they don't feel too bad). On top of this, ones rather odd behaviour can get a bit much to handle. Periods of optimism and elation alternate with periods of frustration. I kill time by digging ditches, preparing a riverside cross-country ski trail, and trample mud across our stupid light beige carpets, and leave piles of muddy clothes to be picked up.

 

 

Turning on and tuning in

This is your cibererman calling, the one with the $10,000 titties, just back from a week (Monday through Friday) of what they call "programming". Quite a change, eh?

 

MONDAY

Admitted this morning (thanks again, Mr. Harris). Thanks again, Eppy, for swinging the five-day stopover that will allow me to have adequate rest in what is an arduous stage of the proceedings. Not just for my own comfort, but if I am exhausted each morning, the test results will be compromised, more a measure of my state of exhaustion than any subtle adjustments to pulse amplitude, width or polarity.  

 

Eppy can't tune me in today, in spite of my special efforts to stay "off medication" since midnight last night as requested. Ah, well, take three more pills and come back tomorrow. 

 

I make my way to the "Patient Management" section of the Hospital on the ground floor. It used to be "admitting", but I guess they managed to find a "discharging" to merge with. I've forgotten to bring my hospital card, but they know me by now, and print me another. Also, my money, credit cards, toothbrush and a number of other things that they can't print.

 

I go for walk round the block, on this beautiful sunny Toronto fall day. Am amazed to find hundreds of shiny horse-chestnuts ("conkers", prized for the game in which you thread a string through a nut, then take turns trying to swing and break the other guy's nut) just lying there on the ground. In England as each conker fell it would be pounced upon by some eager schoolboy and four or five of his friends would be busy throwing sticks to try and trigger a premature nut-fall. In Toronto they were falling so profusely and bouncing off the tin roofs that I had to run for cover to protect the integrity of my own ciber-nut.

 

TUESDAY

This is the big day!! A porter wheels me up from the fifth to the eleventh floor. 9.a.m. and Eppy has the "Medtronic" pulse generator box on the table. She shows how to turn me on with a small but powerful permanent magnet, counting two seconds on each side. I'm to use the identical procedure to turn me off if anything goes wrong with the DBS treatment at any time Eppy isn't around. She hands me the magnets that I pocket. Medtronic is a US based company, although this operation is not yet available in the USA, and Americans come to Toronto for it. The entire procedure costs them about US$30,000, which if you ask me is good value for money. However, that includes a minimum time in the hospital.

 

First series of tests to find which electrode(s) work best. There are four electrodes to choose from, which can be energized singly or in pairs or groups of three or four. The tests are a bit bizarre to the uninitiated, a much abbreviated selection from the standard Parkinsons rating scale procedure, designed to give a quick but precise measure of how bad your symptoms are at each stage of stimulation. Eppy takes a "baseline" set of readings, with "Meds off, DBS off". The tests are as follows (try them, they're fun):

 

      Sit perfectly still with palms upward on your lap.  This yields six scores, for tremor in each of four limbs, head and body; I rated "0" (no tremor) in most cases.
     6 scores
     
      Ø    Hold each hand above your head, and tap finger and thumb together rhythmically in a pincer-like movement, first right, then left.
     2
     
      Ø    Clench then open each hand, rhythmically and widely
     2
     
      Ø    "Screw in a light bulb" with each hand.
     2
     
      Ø    Bring your elbows up to touch your fingers beneath your nose.

       
     1
     
      Ø    Reach out with each hand to touch the tip of Eppie's pen, then your nose, rapidly but accurately, rhythmically six or seven times with forefinger
     2
     
      Ø    Heel on ground, raise and tap toes on ground, rhythmically and with big movements (right then left foot)
      
     
      Ø    Fold arms and stand up, unassisted
     1
     
      Ø    Walk down corridor, turn around and come back (looking for freezing, balance, rhythm and posture)
     1
     
      TOTAL SCORES
     16

      scores
     
       

 

 

Parkinson's disease rating tests 

This is a simplified set of tests, for repeated use to measure changes resulting from DBS programming. Each score is rated on a scale from 0 (no signs of impairment) to 4 (unable to perform the exercise). My own ratings were approximately as follows: No meds, no DBS, about 3 (classified as "advanced Parkinson's disease"), Optimum meds, no DBS, (the "on" state), about 1.5 to 2, Optimum DBS, no meds, about 0.5; Optimum DBS, optimum meds, about 0.

 

Our performance is re-rated after each new probe setting. Each parameter (such as pulse magnitude) is adjusted first to establish the maximum you can tolerate. For example, at certain levels, my eyes crossed so I saw two Eppies, or my limbs experienced uncomfortable tingling. Eppy would then back off to a comfortable level.

 

It seemed that my best electrodes were 2 and 3. Preliminary settings were established for Electrode 2, which was left switched on overnight.

 

 

WEDNESDAY

I have to turn off the DBS with my magnet to get some sleep. I've also experienced some violent diskinesia (jerking of legs), which I've never had before. The aim is to adjust DBS until there's very little diskinesia and best score in the Parkinson's test.   

 

I learn to propel myself around the corridors using the walker as a scooter, which alarms some of the nurses, but sure gets me to the television room in a hurry. I play conkers with Sue, a night-nurse, who like myself hails from the north of England so knows her conkers. (The others think we've gone barmy and probably are right). 

 

 

THURSDAY

Both left and right electrodes are now running. Eppy is pleased with my performance and so am I. To reduce diskinesia, my medication is halved (!) Any reduction in medication is likely to help me improve my speech.

 

This time, I can leave the DBS on overnight with no problem. I spend much of the night practicing my newfound skill at corridor walking, which I can now do without the aid of a walker. 

 

 

FRIDAY

Go for walk over to Spadina Ave. to get in mood for final tests at 9 a.m.  Look for Palmerston Blvd where I used to live Can't find it but remind myself of why its so nice to live in this part of Toronto, with its rich variety of ethnic shops. Go into one large and interesting-looking store - "Can I help you?"  "Just looking, thanks". "Sorry, we're not open" - guess in spite of the improvement I still look like a zombie to some people (my shiny lumpy head and wooly slippers might just have reinforced that impression).

 

Return to the hospital to find they've been searching all over for me and are about to call the police. They insist on sending a porter to accompany me to 11th floor. I chase him down the corridors and get there first.

 

Final tests, final settings, then off home. Pop into neighbours to let them see for themselves the good news. Of course, it's Friday and Zac Marshall is working. Tend to lose track of weekends when you're retired. Plant about 40 conkers in celebration. The last lot collected in Brampton about 12 years ago, are now 20 ft trees. Visit Al Pace at Farmhouse Pottery to order some mugs for our B&B. Play bridge at a friends, and return to greet our B&B guests.

 

SATURDAY-SUNDAY

Bridge tournament at Mono Centre. Guess I must be tired. Freezing and shaking like DBS never existed. Play one of my worst games ever. Have to remind myself that fine-tuning is still to come, and "it ain't over till the fat lady sings".

 

MONDAY

That's better, even a little sleep works wonders. Out walking and looking forward to my first post-op golf.

 

As I said, I'll update you on my performance at golf and skiing before long. First snows yesterday, but bright and sunny today.

This was the text in entirety for that newspaper article.  

SInce then, obviously, three years later, I still benefit greatly from the DBS.  No increases in medication, in three years, and I still plays golf and ski, equally badly.  However, readers should beware of the short term euphoric reaction which tends to overestimate the benefits of the operation.  Would I still do it all over again?  Yes, I certainly would!!!

This is definitely not a cure, although that may be just semantics.  I keep holding out hope for stem cell research that may actually repair the damage that has been done.  Thanks for letting me share.

John Franklin

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

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