As I Sit By My Window

The loss of his ability to write is one of the many changes my father has suffered since undergoing Deep Brain Stimulation surgery for Parkinson’s disease. Six months ago, he wrote his last blog, the “faux interview.” In it, as he reflects on the experience of undergoing three DBS surgeries, you can plainly see the hopes that the surgery would relieve, even for a while, some of the more difficult symptoms of his disease.

 

A very short time after the final surgery, however, he was no longer physically or cognitively able to compose a blog, as his mental sharpness was gone and his hands incredibly weak. In the past two months confusion, hallucinations, and delusions have appeared with the onset of what seems to be Lewy Body Dementia (LBD) or Parkinson’s Disease Dementia (PDD). The struggle to make sense of this rapid and unexpected turn of events is a source of incredible frustration. In his own words:  

 

There is a large amount of uncertainly with this disease. From day to day it’s variable. Symptoms can range from an ability to be fairly productive, to a life that’s severely attenuated. I am functioning at about fifty percent Ievel I suppose. What seemed to have been a fairly benign diagnosis of Parkinsons, is overshadowed by something much larger. Dementia is part of the picture but didn’t appear until much later [than the motor symptoms of Parkinsons].

 

Recently, [grappling with dementia] I have come up against life and death issues and those are very hard. You find you may or may not be prepared to take this much of a status change. Facing [severe health issues and] death from a much more rapid approach than you intended or ever dreamed.  

 

There are kind of gaps in your thinking. For instance you find yourself in the horrible fate of a disc jockey – dead air time – nothing happening in your brain, or waiting for something to happen. It appears like a computer screen – fills itself suddenly and you have access to all this information, [only] it has come up in patterns and is difficult to interpret.  

 

I would say I’ve had a really good life. Very fortunate. Sitting here on this beautiful day with sun shining and life springing anew I begin to miss the older life a lot. When I was young and stronger mentally as well as physically, I began to think this life would go on forever – but it’s not meant to be. Life has a beginning and an ending. I appreciate that, but it is a hard thing for me personally to [be at the] end.

 

Each of my children added a different link to life that has been very special, a highlight of my life. Each child is so unique and different they’re all really a delight. The main thing to point out in this respect is that my children are still quite young. At least I thought they were, but somehow they had grown up and become beautiful young women and a fine young man. Each answered a different calling, worked hard, and I was extremely proud of them. None of them followed exactly my course, nor would I have wished them to.

 

Claire became a nurse, and later a photographer. Jacelyn became an executive. Jay became an independent contractor for a locally based dive services company. I was truly amazed and inspired by their personal work and stories.  It was truly a delight to see Jay catch fire and build a career he really believed in and enjoyed. Something that fit his independent character very well. Jacelyn’s path was slightly more structured -  a different call, but no less innovative and inspirational. Claire was my very unique soul. She took after the one piece that I truly delighted in, which I couldn’t excel in because of my vision, and color blindness, even though I loved photography for much of my life.

 

What do I say about a wife like Carolyn. She was truly perfect for me. I don’t really know if I think marriages are made in heaven, but if any possibly could be this one certainly was. The earliest years with her seemed to be perfect and of course it cannot be perfect because nothing is. Still later in life, a fantastic finish, as we approached life from the standpoint of working together [through the challenges of this disease].

 

I have loved animals from my early life. My lab Bella is a silly, selfish, yet very loving animal [who] provides what remaining days I have a great deal. Often when it’s the middle of the night, [and something is] threatening my sense of well-being it’s amazing because just the reflection on her face is enough to soothe my soul. Whatever that is, whatever that basic understanding is, it isn’t much but it’s enough. Total acceptance. Total care. I don’t think the value of that can be underestimated.

 

I feel I should say great orations about religion and other [existential] issues; that somehow I’ve found the truth. But I don’t think I really have. Perhaps Paul Simon said it best – it's all gonna fade. You feel like you should have volumes [to share] from a life that has been so completely lived, but it all seems to come up as puzzles [for me now]. With this disease, things become increasingly shattered and broken pieces remain. Even as I finish these written words, they become tangled [in my mind].   

 

The shock of the Lewy Bodies freight train that has hit him is difficult to process. There is so much more he wanted to do, especially with his kids and grandkids. Perhaps write a book. And yet he has had a full life, a good life, and has raised three children and played a pivotal role in setting them on a successful path. Bringing his legacy into focus are six grandchildren who know him as Grampy and three kids for whom he will always be a hero.    
 
-John and guest blogger/daughter Jacelyn
 

 

 

 The Faux interview

The interviewer in the blog that follows is fictional.  It is a tool to get the information out that I   survived dbs  surgery and that I continue to recuperate and wait to see the full results of the series of surgeries to place leads deep in my brain where they provide selectrical stimulation that works with conventional meds and provides a substitute for some the stimulation provided by natural dopamine.

In the short period of time that my  mind has been focused on dbs, I only felt let down personally by my beloved MAC computer which committed suicide after 6 years of service. For now it has been given new life with a new hard drive.  However,  the trust has been lost and I am afraid that our relationship will never be quite the same.

Interviewer: Time has passed and there are more than a few people who at least care enough about you to be asking.  How are you doing after surgery?

John:  I can say that I have been through 3 surgeries each associated with dbs or deep brain surgery.  The First surgery was intended to be the last surgery as far as placement of the leads but it had to be cut short(March 4), due to respiratory difficulties.  At that point a second surgery was scheduled for April 25. The outcome from each of those surgeries was fairly difficult to assess but every word I have to date indicates perfect placement of the leads. I then waited for a 3rd surgery to place the batteries and then turn-on the system.

Interviewer:  Was this interruption or time time delay to the surgeries difficult?

John:  I would have to say  yes.  In addition to the physical discomfort, there is a psychological component.   I found myself wondering if I Had subjected my brain to considerable risk with little chance of real gain. 

Interviewer:  What if a cure for Parkinson’s is found within the next 10 years? That would be the real gain and then what have you done to your brain?

John:  The surgeon has told me that if a cure becomes available that they can simply pull the Leads out and go back to square one. permanent  damage to the brain is not a part of this process.  Do not get me wrong.  There is risk of adverse outcomes.

Interviewer:  What did you find to be the most difficult aspect of the dbs series of surgeries.

John:  I Believe that it was the fact that I had to stay quiet for at least three weeks after each one of them.  I Found it difficult to stay close to home and not do things that were more strenuous and demanded more energy than I had at the time. I would cheat and do things that I knew not to be wise such as bending and pulling weeds on our place.

Interviewer:  Tell us more about that final or 3rd surgery?  

John:  The third surgery included surgical placement of the batteries and the powered  stimulater in the chest wall.  The leads which had been previously stored beneath the skin of my scalp after surgeries 1 and 2 were now fished down along the neckline and connected to the batteries. The batteries and the controller were placed just beneath the collar bone or the clavicle on each side of my chest.  Powering it up and programming the device began a few days later.  Just an initial energizing of the system to get things going.   The surgery itself created pain and soreness and since it was day surgery the lingering presence of the anesthesia was still pretty fresh when I left the hospital.  I am still in recuperation from the third surgery. It was probably the most painful surgery of the three. It left my shoulders sore and my body weak. I will not soon forget walking away or staggering away from the hospital while relying on my wife’s strength to hold me up. 

Interviewer:  Would you say the surgery has been a success for you?  

John:  As far as the actual surgery is concerned I would have to give it a yes with some qualification.  In my mind success happened last Monday morning at 8 o’clock. at the point the system was powered on. Now things are running in reverse and which means,  we were not talking about adding more drugs,  either to treat the disease or dealing with side effects of drugs previously used to treat the disease.  We  now have a new tool and are talking about the use of less or no drug and how I might react to that.  The qualification is there only because we are so early in this process.  The full outcome is a separate piece waiting to be written.

 I would like to say thank you for the support and prayers of my friends.  They held me up at a time when I may have,  on my own, have given up.

Less shaky in Coupeville,

John C. 

DBS: One more Chapter

Personal Parkinsons

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DBS: One More Chapter Posted: 03 May 2015 12:37 PM PDT Then he said to the man.  "Hold out your hand". The man held out his hand and it was healed. Mark 3:...5 I slept surprisingly well the night before the latest and hopefully my last dbs surgery.  In the previous 24 hours more than once I  began to wonder, "could I some how get out of this?" The answer quickly flashed back inside my head from somewhere, "no, you are much too far down the road to turn around now."replied my inner voice.  It was time to put second thoughts away.  After a brief morning with no coffee or meds Carolyn and I gathered our things and started on what appeared to be a long journey.  We stopped at admitting and the check in person attatched a wrist band which would identify me right down to matching medications by way of bar codes. Then I was given very precise directions, "walk down the hall with windows on one side and then turn right, go up the incline, and then pick up the phone and tell the person on the end of the line your name." I did this and the voice at the other end was real.  The time had actually arrived and they were waiting for me. The nurse at this first stop was very helpful and happened to be a man of about my age whom coincidently loved the Mariners and baseball.  He talked a lot, probably more than I personally wanted at the time. He checked my history, took vital signs and he eased tensions somewhat.  I think when I walked into to this department I was fully clothed, accompanied by Carolyn and perhaps still a bit groggy, having no coffee or breakfast. but now I was ready to leave and found myself dressed in nothing but a hospital gown, alone. on a gurney being wheeled out and down a long drafty, and windowless hallway to another hidden department. I entered the next area that  appeared to be populated by anesthesiologists going over their plans for their part of surgery with their patients. Plans for people much sicker than I.  I found that humility and thankfulness were most appropriate  properties at this level Here also I was also greeted  by the Surgeon's assistant. She appeared while the anesthesiologist was going over her plans and they now began to work together.  She once again said my previous surgery for the left side of my brain lead placement had ended in a less than ideal situation.  They believed that several things together had left me with me without any ability to clear my throat, in respiratory distress and very low oxygen  saturation. The end result was subsequent cancellation of the second half of the surgery.  She explained I had people concerned and that they were determined to not let that happen again.  Their plan included: keeping me at as high a level of consciousness as possible, adjust the angle of the halo to improve the opening of my airway. (A halo is a steel or aluminum device that attaches like a Christmas tree stand and immobilizes your head) They were determined not to let me fall asleep this time and diminish the risk that the pooling of fluids at the back of my throat might cause. When I finally arrived at the Operating Room I felt like a rock star, there were plenty of people there.  Mostly nurses eqiuipped with advanced specialties. No one appeared nervous but maybe they would not have been, given the expertise that was walking around that room. It seemed to be only a few minutes and the surgeon appeared and reintroduced himself and began as soon as the halo was in place.  He began by numbing portions of my scalp where he intended to cut the skin of my scalp back and then to bore a dime sized hole in my skull.  He warned that I might feel a little sting at first and then a little pressure similar to work at the dentist's office.  I felt them both, but neither amounted to anything significant.  No further local anesthetic was necessary.  Since the brain itself has no pain receptors. The drilling began and the The sensation of my skull being bored into was, loud and I felt the vibration.  I was given sedation at various times both morphine and propofol in low doses for light sedation.  The propofol felt as if it burned my veins as it went in but by the time it reached my elbow The burning had ceased.  I lost track of things somewhere around this point, but picked up again when time for insertion of the lead began and my participation was asked for.  The surgeon called out the position of the lead in millimeters.  It went something like this: "10, 9.5, 9, 8.5".  He was inserting the lead and he took it down to a negative number.  He then asked for my participation.  Working on the right side of my brain he turned on the power and then said, I want you to say when you feel a difference in your hand.  I soon felt a tingling sensation.  He adjusted things a bit  and then asked that I stretch out my left hand.  There was no tremor at all.  What an incredible feeling! Squeeze your thumb and finger together.  Usually a difficult task but this time It was smooth as silk.  I could have not felt better if he had called for me to stretch out my hand......and see it healed. At that time I became aware of music. Credence Clearwater and Who'll stop the rain.  Then some one asked if I wanted to stay awake the rest of the way.  Of course I did,  I wanted to savor this moment.

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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

Countdown to Surgery

The big and powerful 737 was running  East  when the pilot banked it and turned sharply amidst turbulence over the Atlantic.  Turbulence that was strong enough to bounce us around as we made the turn, making me feel uneasy.  Carolyn reached for my hand and squeezed gently signaling that if this be the end I am with you and then closed her eyes and communicated she was ready to a much higher authority.  Once the maneuver was complete, we had reversed directions and were in line for our Eastern approach to Fort Lauderdale International airport.  The plane lost altitude rapidly and touched down with powerful bumps that had me wondering how long a set of tires might last on this thing.  The rocky touch down may have signaled a rapid rate of descent and approach but the pilot was in control and followed it up with powerful reverse thrust and braking to slow the silver bird.  Slowing with a force so powerful that we would have slammed into the seats directly ahead of us had we not been securely belted in.  Now after all of this, we were finally ready for a more peaceful taxi to the airport gate.

Carolyn and I strode off the plane and into hustle of the Fort Lauderdale airport several thousand miles from home.   It felt like we were in a whole new world where clear blue sky and warmth were common events in the midst of winter.  We were prepared to spend the next couple of weeks here in Hollywood, Florida at our eldest daughter and son in law's home.  Our intent was to have some quality time with grand kids, take long walks on the beach and rest up for deep brain stimulation 
surgery.  Add to that the joy of Cuban coffee, a good beer now and then and I feel rested right now just thinking about the days in front of us.  After all, in the weeks ahead looms a momentous step: Deep Brain Stimulation Surgery.

Though our trip had been planned many months in advance and the steps toward DBS had similarly begun many months ago the events that scheduled them back to back with a Florida trip fell in place last week.  After last week's appointment with my neurologist we agreed to move ahead with surgery. I had placed a call to the DBS surgical center at Swedish Hospital and told them that I was ready.  With this call the wheels of what seemed like a massive freight train began to turn, picking up speed with each passing day.

Thursday late afternoon I was called back by their scheduling clerk and real times and dates were agreed upon:

2/26 Thursday 2015

Final fasting blood work and physical exam. Which means, no liquids or food after midnight.  Same day1230: MRI brain scan. An image to look for excessive brain shrinkage which could allow movement of my brain and complicate placement of the wire leads.  The image also would provide the surgeon with a map for guidance to subsequent placement of the leads into the deepest part of my brain.

3/03 Tuesday
DBS

3/03-3/04 Tuesday and Wednesday 
Observation in ICU for one night and then hopefully home to sweet Whidbey Island.

3/11 Wednesday 
Back to Swedish for outpatient surgery for placement of controller and batteries directly in my chest wall somewhere beneath the clavicle or collar bone.

For the time being still Shaky in Coupeville