The Time is Brief

We had spent two sunny and bright days day in a "1940's" style rustic cabin. The location was perfect with a view over looking the the fishing village of Seikiu on Washington's Olympic peninsula. The view of the village was bordered by an expanse of the sea called the strait of Juan De Fuca, which sweeps across to an uninterrupted outline of Vancouver Island, British Columbia. After two clear summer like days, today the wind and clouds have have blown in, as if providing a clear signal that it is time to pack up and leave. Time to say goodbye and thank you to son and daughter in law who thought up the trip and invited us to tag along. 

We had one passenger to drop off on the way home, daughter in law's brother. A young pilot on a break from flying in Alaska he was getting off at the Port Angeles air field where he had arranged for his father also, a pilot, to pick him up and fly from there to Bellingham. With an eye to the developing weather I wondered if the strengthening crosswind would be factor for his father's small experimental plane, but he himself appeared unimpressed. So we dropped him off and journeyed on.

The lively conversation of our previous leg of the journey turned to silence as Carolyn turned the truck toward home to Whidbey Island by way of the Port Townsend Ferry. I began to think over the remaining steps left to complete DBS surgery for the right side of my brain, now just over a week away. With the left side complete, recovery from the first surgery to my thinking had not been easy. But now that process for the left side of my brain was finished and waited for hookup of leads and programming.

The two week check up last week had gone well. After a neurologic exam the specialist nurse (ARNP) outlined the final positioning of the stimulation leads beneath the skin behind my neck. She talked about the process of of programming the units themselves which may take a few months and sometimes up to a year to complete. Finally, they had paid close attention to the pooling fluids in the back of my throat which had led to low oxygen saturation and subsequent termination of the first surgery. This time she explained how they would immobilize my jaw and reposition for more effective airway maintenance. Just to be certain I will kept at a higher level of conciousness throughout the procedure.  Yes, I am ready to get on with the next phase.

We arrived at Port Townsend and weather was now an increasing factor as the ferry which had already been interupted by two low tide canceled runs, began to limit the number of cars allowed per run due to wind created deteriorating conditions. We had to wait, so we walked our faithful dog. Enjoyed a picnic in our pick up truck and watched the rain spatter our vehicle as the wind continued to increase, shake our vehicle, and the sky darkened.

The ferry arrived nearly 2 hours late and made a slow and cautious landing at the Port Townsend terminal. Thankfully the ferry and crew were none the worse for the wear and declared it safe for at least another crossing. Loaded last, this was our ticket for a wild journey across Puget Sound and it did not fail to disappoint. Intermittent heavy rain and large swells kept us rocking and rolling all the way across. The captain announced that we would need to make a turn as we approached the terminal. He said "hang on to each other and get ready for a rough ride." We hung on and finished the crossing.

DBS is a lot like that ferry ride. I plan to hang on, trust God and the 
Professional crew to finish the job.

Dwindling Days

We had spent two sunny and bright days day in a "1940's" style rustic cabin.  The location was perfect with a view over looking the the fishing village of Seikiu on Washington's Olympic peninsula. The view of the village bordered by an expanse of the sea called the strait of Juan De Fuca.  which sweeps across too an uninterrupted outline of Vancouver Island, British Columbia. After two clear summer like days, today the wind and clouds have have blown in as if providing a clear signal that it is time to pack up and leave. Time to say goodbye and thank you to son and daughter in law who thought up the trip and invited us to tag along.  

We had one passenger to drop off on the way home,  daughter in law's brother.  A young pilot on a break from flying in Alaska he was getting off at the Port Angeles air field where he had arranged for his father also a pilot, to pick him up and fly from there to Bellingham.  With an eye to the developing  weather I wondered if the strengthening crosswind would be factor for his father's small experimental plane,  but he himself appeared unimpressed.  So we dropped him off and journeyed on.

The lively conversation of our previous leg of the journey turned to silence and Carolyn turned the truck toward home to Whidbey Island by way of the Port Townsend Ferry.  I began to think over the remaining steps left to complete DBS surgery for the right side of my brain, now just over a week away.  With the left side complete, recovery from the first surgery to my thinking had not been easy.  But now that process for the left side of my brain was finished and waited for hookup of leads and programming.

The two week check up had gone well.  The specialist nurse (ARNP) outlined the final positioning of the stimulation leads beneath the skin behind my neck.  She talked about the process of of programming the units themselves which may take a few months and sometimes up to a year to complete.  Finally, they had paid close attention to the pooling fluids in the back of my throat which had led to low oxygen saturation and subsequent termination of the first surgery.  This time she explained how they would immobilize my jaw and reposition for more effective airway maintenance.  Just to be certain I will kept at a higher level of conciousness throughout.

Yes I am ready to get get on with the next phase.

We arrived at Port Townsend and weather was now an increasing factor as the ferry which had already been interupted by two low tide canceled runs, began to limit  the number of cars allowed per run due to wind created deteriorating conditions.  We had to wait, so we walked our faithful dog.  Enjoyed a picnic in our pick up truck and watched the rain spatter our vehicle as the wind continued to increase, shake our vehicle, and the sky darkened.

The ferry arrived nearly 2 hours late and made a slow and cautious landing at the Port Townsend terminal.  Thankfully the ferry and crew were none the worse for the wear and declared it safe for at least another crossing.  Loaded last,  this was our ticket for a wild journey across Puget Sound and it did not fail to disappoint.  Intermittent heavy rain and large swells kept us rocking and rolling all the way across.  The captain announced that we would need to make a turn as we  approached the terminal.  He said "hang on to each other and get ready for a rough ride." We hung on and finished the crossing.

DBS is a lot like that ferry ride.  I plan to hang on and trust God and the 

Professional crew to finish the job.

Personal Parkinson's

DBS for Parkinson's - Play it again Sam

The neurosurgeon confidently walked into the exam room where Carolyn and I sat.  He introduced himself and he was very personable and quite enthusiastic about my forthcoming DBS (Deep Brain Stimulation) surgery.  I was very impressed by him and after only a brief talk I was ready to pack my bags and go where he was going.  He used an analogy in which he compared Parkinson’s to a dense fog which begins slowly and then closes in around you making it impossible to see or think of anything else. He said he had found that DBS surgery could push the fog back so that at least for a period of time there can be remarkable relief of the motor symptoms of Parkinson’s.  The tiny tip of the leads act similar to a pacemaker which controls the abnormal movement generated deep within the brain by Parkinson’s. He brought us back down to earth when he shared the side effects or how things can also go  awry.  Side effects, though not frequent, are very real.

The surgery scheduled for the next day appeared to be straight forward and the surgeon was very confident that my combination of “Tremor Predominate” Parkinson’s and youthful demeanor would add up to a successful procedure. He had told us to expect two sided lead placement, one for each side of the brain.  I would be awake and sedated for at much of the procedure and would be requested to give the right sided "go" permission after placement of the left lead was complete.

After a partial night’s sleep I got up the next morning, a bit groggy and believed that I was ready to go. My preparation had included nothing to eat or drink since the prior evening and no meds. The surgeon had been precise and accurate in his depiction of how things were to proceed but as he knew there is an endless number of ways people can react to surgery. After the first side lead placement the surgery was suddenly stopped.

I recalled being responsive to his request for my desire to proceed and at the same time battling for a chance to breathe.  The battle for respiration seemed to go on a long period of time but  it may have been only the briefest moment.  A dangerous drop in the saturated oxygen in the blood stream had occurred.  The surgeon made a command decision to stop the surgery immediately and he swiftly closed the incision he had made for placing the right side leads.  I was taken for a routine CT  scan. I also had a precautionary chest x-ray and I was now was wheeled to recovery where I would remain until the sedation drugs worked their way out of my system.

The surgeon stopped by and peered into my bed while I was in recovery and gave me enough information so that I would know that the surgery not gone perfectly and had been cut short. He would see me later.

I was returned to the neurologic ICU as do all DBS patients for a mandatory, one night stay.  It was here that I had an emotional and teary reunion when when wife Carolyn and daughter Claire also joined me.  I was uncomfortable and did not feel like moving as the hours began to tick away.   It came over me in a haunting manner again and again that somehow I had failed and now I faced a more complex pathway out.

The surgeon returned that afternoon and gave me the options, one of which included a second surgery to place the right sided lead.  Another might be to program the left sided lead and then to see how that does by itself.  In a bit of a post op fog I hung on to the disappointment of the earlier part of the day.  He then carefully examined both tremoring arms and was delighted with the strong “honeymoon” effect I was getting in my right hand.  The honeymoon effect is a calming of tremors caused inexplicably by simply moving a lead or leads into place.   This indicated nearly perfect location of the left side lead.  I still remained somber but these small but important details began to reveal that many things had gone right.

Through the night I dozed a few hours at a stretch between pain pills.  I was released the following day, tired, exhausted and desired not to think about DBS surgery for the time being.  It seemed that a second surgery existed out there beyond the mile marker and like a shark ready to pounce, it was a danger I wished not to think about.

At the same time I have been fortunate enough to to have been given a resilient frame of mind all of my life.  Now it is one week after the surgery and I am beginning to believe that with God’s help I can manage to endure a second surgery to place the other lead.  I can then focus on the fun stuff such as programming the controller to take over and do its job.  It can then be entered into the battle against Parkinson's.  The incredibly fine staff at the neuro science center have already made calls exploring options with me for a second surgery and a date has been set (April 29).  They have not forgotten me, rather they are systematically putting things together.

I like that feeling and soon enough I think that I will be ready once more to pack my bags and jump aboard the same train the surgeon is on and pray that the one who counts is guiding the way.

To be continued!

Still Shaky in Coupeville

Preparing for Deep Brain Surgery at The Swedish Neuroscience Institute

We sat waiting patiently while my Parkinson's doctor, a neurologist and movement disorder specialist reviewed the results of my tests that had been ordered and completed as a part of the requirements leading up to Deep brain surgery or DBS.  DBS is the surgical process where wire leads are threaded through the skull and then are placed deep, to nearly the center of the brain.  Once turned on the stimulation provided at the end of the leads provides a blocking action on cellular output from the targeted area and can have a remarkable effect on certain Parkinson's symptoms.  The tests I have been undergoing are required to rule out existing conditions that are contraindicated by DBS.  Primarily we are speaking of dementia and "poor response to drug therapy"  The doctor had these results assembled in a folder including: cognitive and memory tests,  my off of drugs movement testing, my on drug movement testing.  She also had the conclusions drawn from each of these tests by those who had worked with me when they were given.  I already knew that each of these professionals had advanced a green light for surgery.  Now my neurologist was ready to share her conclusions with my wife, Carolyn and Myself.  Her recommendation would be based on their notes, and those of  her own and others from nearly 5 years of my being seen for symptoms of Parkinson's and now approaching 4 years after diagnosis.

Carolyn and I have a very high regard for my neurologist and we believed that she had not only applied her considerable expertise to my care, additionally she also honestly cared about me.  Both of us were ready to put a lot of confidence in the conclusions she had arrived at and what she might say.  She started with, "I still believe that you are an excellent candidate for DBS."  No surprise, this was an opinion she had been repeating since nearly the beginning.  It was much more impactful now that I stood on the threshold of having such surgery.  She let that soak in for a minute or so and then went on to discuss what we might or might not expect from the surgery.  The effect of surgery is primarily on the motor or movement symptoms of Parkinson's.  I have a variant of Parkinson's known as "tremor predominate" which means that my primary symptom of tremors could be expected to respond well to deep brain stimulation.  The underlying cause of Parkinson's and other symptoms of the disease itself will continue.  She went on to say that "you may expect the surgery results to be as good as your best "on" drug therapy."  In other words at full drug dose and when the disease is responding optimally to drugs, it is similar to DBS surgery results.  The difference is that I could take fewer drugs and would not be as heavily burdened by the side effects of drug therapy. The roller coaster of drug therapy can be effectively smoothed since DBS stimulation is active and operating all the time, 24/7.  Unfortunately some drug therapy usually remains after surgery but the quantity is likely reduced and occasionally may be eliminated.

It became time for questions and I quizzed her "I am doing pretty well with drug treatment and I have read that tremor predominant Parkinson's often moves slowly.  So why would I want to undertake such a major procedure?"  She explained that in observing me for the past several years and seeing my drug list grow that she could not say my disease was slow moving.  She went on to say that she had some patients who were progressing more slowly and some who were progressing more rapidly.  I was average and at this rate I could expect significant disability within 5 years.  Her intent I do not believe was to frighten me but to put me in touch with reality.  The truth is that Parkinson's is a relentless disease from which there are no remissions.

We finished with discussing which receptor site in the center of my brain would best be targeted for the goals I have with the surgery.  The neuro surgeon at the Swedish Neuro Science Institute in Seattle, would place the stimulator leads in one of two sites.  The process must be done twice.  Once for each side of the brain since both sides of my body are affected.  knowing that I desired very much to reduce drugs as much as is possible she suggested that the surgeon be instructed to place the lead in an area called STN or sub thalamic nucleus.  At this location excellent results have been achieved after surgery with drug reduction.

Though she is not a surgeon, many details related to surgery and the post operative tuning of the implanted leads are all under my neurologists care.  Amazingly she is even willing to alter her schedule to assure her availability for follow up or for tuning appointments. It does take several months of tuning the output of the stimulator to achieve optimum results.

After returning home, I placed a call to the nurse practitioner at Swedish, simply stating that I want to move ahead with surgery.  She called back the following day and sounded delighted with our decision.  She reinforced that my youthfulness and excellent overall health profile helped boost my status as an excellent candidate for the surgery.  Final scheduling of the surgery will depend on the surgeon and the staff at Swedish Neuro Science institute.  I am expecting an early or late March date.

Still Shaky in Coupeville

Catching The Frisbees of Life

....Should we accept only good things from the hand of God and never anything bad?...
From Job 2

I launched the Frisbee with a quick backhanded toss from my right hand.  At first the Frisbee flew a flat and somewhat rising trajectory to my right.  Juney eagerly retrieved it with typical Lab enthusiasm.  I tossed it many times but I could not get it to hold a level  flight long enough for Juney to catch up with it in the air.  Juney is our middle daughter and family’s black lab who has stayed with us this past week.  She is a lovely dog and is a people pleaser.  I am reconciling my advancing age with declining ability physically to throw a Frisbee.

Advancing age or not it is still a delight to throw a Frisbee to a Labrador after more than 40 years. Then it was with my brother’s black Lab, Tuco, who lived with myself and my brother in the Fall of 1970.  We were going too school at Washington State and lived together in a small basement apartment adjacent to Mcgee Park in Pullman, Washington.  I was young, Tuco was young and my brother was a young veteran of the Vietnam war.  My brother had lived through great pain by way of this terrifying curve called Vietnam. No such hard curves for me,  God was spinning perfectly thrown Frisbees my way.  I thought that was the way things would always be.

If my life was a picture book I would flip through pages and remind myself of all of the good things that have been sent my way.  I might come first to a picture of my wife.  At this I would pause for a while and think about what a miracle it was that I even met this wonderful girl from upstate New York: 

You know how it is: you’re twenty-one or twenty-two and you make some decisions; then whisssh! you’re seventy: you’ve been a lawyer for fifty years, and that white-haired lady at your side has eaten over fifty thousand meals with you.
From Our Town by Thornton Wilder

From our marriage came the most wonderful pieces of my life, three children.  Two girls and a boy, they are still young, married and are working hard to make their way in this world.  And yet they are no longer here most of the time and my wife and I have only smaller roles in their lives. 

There are no free passes in life and if I ever had one, it was revoked when the neurologist at the University of Washington told me I had Parkinson’s disease.  I had no clear idea of what living with a chronic degenerative disease would be like. Even less clear were what changes  mentally and physically that would come to roost and never leave.

I was about to learn what it is like to take prescription drugs daily for a long time.  I was about feel what it is like personally to balance intended drug effects with unintended effects or side effects.  I was about understand what all of my pharmacy customers already understood.  Taking drugs on the long term is an arduous, and difficult task that requires much effort and expense.

And yet there is reason to hope, given the scientific advances with Parkinson’s. The list of medications available to treat PD since I entered pharmacy in the 1970’s has risen sharply and is worth noting. Startling success has been achieved with DBS or deep brain surgery.  A story came across the internet this past week about a young woman with early onset Parkinson's who has recently ran a full marathon after receiving the surgery.  Not a cure but a procedure that can provide relief for many and often for a long time.  Still it is not a procedure to be taken lightly and does not cure while it apparently does a very good job of treating some of the symptoms.

In that Fall of 1970 I would rush back to our tiny apartment somewhere between my early classes.  I unlocked the door and Tuco would come bounding out bursting with Labrador strength.  With Frisbee in hand I stepped out to the park and dog and I would start our game.  With a quick flip of my wrist I could send a Frisbee straight and true halfway across the park.  It finished with a hover and was plucked from the air in perfect timing by a leaping 2 year old Lab. a crowd of students soon gathered and clapped and cheered every catch. Those days were a true gift followed by many more.  Now, long after Tuco has gone. It is my turn to retrieve the Frisbees thrown my way by God.  Both the good and bad.

Walking out the PD blues

Wednesday January 29, 2014
8:30 AM: Whidbey Island, Washington
Weather: 46 F, calm, cloudy and misty

Down, self absorbed and no motivation. So I feel, on this dark and misty morning. My downward drifting mood was brought to a conscious level when I was then reminded of things that I simply had not done as planned.  In a sudden desire for solitude I pulled on my fleece sweater, grabbed my Filson hat and whistled for Bella. Time for a walk.

Once outside I picked up my walking stick and then paused and surveyed my partially completed landscape work.  More accurately my eyes were assaulted by large piles of blackberry canes, somewhat ready to haul away.  I wondered why I had started and created this ambitious mess.  A good friend had seen the piles and has graciously offered to help me haul them away.  What would we do without friends?

While I paused Bella had sit down at the trail entrance and was waiting patiently. She looked around in her care free manner and then looked back at me and gently reminded me to forget it for now.

I walked to the trail and slowly followed her to its intersection with the larger trail that encircles the wooded area owned by friend and neighbor, Vivian.  After only a few steps, I began to feel the regenerative power that nature has.  I was greeted by the dark and quiet beauty of the trail meandering uphill among the trees.  I look for the familiar things as I walk. Things I know well and like to think of by name: the wild rhododendron, the trees of fir, hemlock, cedar and alder. This time of year I can see the remains of enormous stumps that are left from the first cutting of the old growth cedars many decades ago. Time slows down in the forest.

I walked slowly but was annoyed by the lack rhythmic movement of my left arm.  PD has taken that away and left a rapidly opening and closing hand and taut muscles in its place. As I approached the highest ground of the walk I stopped and enjoyed the incredible stillness and quiet of the morning.  I thought of the peace that Emerson or Muir or maybe Frost had enjoyed amongst other forests not so long ago.

“You should consider DBS(Deep Brain Stimulation Surgery) sooner than later” were the words of my neurologist as I can best recall them.  She went on to explain that tremors are among the most difficult symptoms of PD to treat with drugs. I have what is called tremor predominant Parkinson's. She followed her statement with, “I think that you would be an ideal candidate.” Still, a lengthy screening process and then an invasive brain surgery that does have risks, is, for me, tough to commit to.  I rationalize by telling myself that the drugs are doing their job and I am doing all right.  Is that self delusion?  Am I really doing all right? I am 64 years old, I do not drive and the drugs probably work about half the time.  People have now been shown to benefit from DBS for more than ten years.  With those who have had the surgery even those who are not drug free are said to be on reduced doses of the drugs and yet I hesitate.  Underlying the undeniable symptomatic success with DBS is the truth that the disease remains and is marching on, probably unaltered. Michael J. Fox once said no more surgery for him until they come up with surgery known to alter the course of the disease. That sounds like clear thinking to me. However, I cannot say that I have ruled DBS out. I will consider it in more detail as spring goes on, perhaps making an appointment to talk with one of the surgeons in an attempt to put it on a personal basis.

I moved on from thinking about PD to absorb the solitude of the forest. No birds, no scampering deer, just the trees which don’t even whisper.  As the mist turns to rain I feel my mood lifting and when I finish my walk with Bell I will split some firewood.

Shaky in Coupeville