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

Mowing and thinking

I cranked up the engine of the old church lawn tractor, shoved it in gear and pulled away from the storage shed.  I usually ask myself about this time, "Why do I do this?"  I don't really know why, but I feel better by donating a couple of hours a week to the church across the summer months.  The high engine noise  produced by the lawn tractor combined with a noise dampening headset pretty much closes the rest of the world off and I think of many things.

I continue to be bothered by the death of Robin Williams.  The comedic genius took his own life last week and now with sadness we must say goodbye to an immense talent of my generation.  Worse, It was made known that he had suffered with substance abuse, bipolar disorder, probably depression and finally Parkinson's.

Depression.  A word that came up when Robin William's wife revealed that he had recently been diagnosed with Parkinson's.  Depression is linked with Parkinson's biochemically and the same pathways that produce dopamine are also associated with the production of serotonin. Serotonin is a chemical that is known to be essential to the maintenance of mood and prevention of depression.  The Fox Foundation has stated that in many people depression may precede Parkinson's movement symptoms for as long as 10 years.

I turned the tractor while fighting the very stiff steering of the old lawn tractor and started up the mowing line again. Depression is linked with suicide.  It is very important to know that it is something an individual cannot simply turn on or off.  Drug treatment can be helpful and may work along side Parkinson's meds.  I personally had to overcome a large bias against drug treatment it in order to say this.  For a long time I had thought that the drugs for depression were simply overused.  

The sun and summer warmth that accompanies it began to beat down on me and I broke out in a sweat as I jounced along, still mowing.  Identifying and treating depression should be a high priority in Parkinson's management.   The probing questions have come up for me in the neurologist's office and also in each of the research studies I participate in. These questions are aimed at identifying a pattern of down turned mood that has lasted without relief for at least two weeks.  

I made another turn with the tractor and this time was greeted by a breeze that pushed dust and clippings back on my face.  I thought of a difficult period in my life when I was still working when my wife was out of town and I felt isolated.Without her. I was clearly in danger of stumbling while feeling weighted down with many issues of my life.  I went for a walk and somewhere along the trail I began to think of suicide as a way out.  The seriousness of what I was thinking about shocked and troubled me when I thought of how many that might hurt.  I am thankful  that I was able to put the thoughts aside.

Robin Williams co starred with Robert De Niro in one of my favorite movies, Awakenings. The 1990 movie was based on the work of Dr. Oliver Sacks.  Dr. Sacks used L Dopa or dopamine in the 1960s to treat victims of encephalitis lethargica(A tragic group of patients from a 1917-1928 epidemic).  A condition that may result in a coma like, catatonic state that also may create Parkinson's related symptoms and can respond to dopamine for short periods of time. 

I finished my last round of mowing and I wheeled the mower in front of the storage shed where I fuel and prepare it for next weeks work.  I glanced up at the parking lot and could see Carolyn's image in the truck as she waits for me.  What would I do without her?  The drugs and tremors keep me away from driving and so she waits.

Shaky

Hands On Parkinson's

With Madeline on our way to Port Townsend

Introduction

When I started down the Parkinson's disease pathway just a few short years ago I had little knowledge of what was in front of me. I sampled a few things which were outside of conventional medical/drug therapy and quickly gave up on them, either due to a lack of will or lack of desire to commit money to the process.  One of the earliest of these attempts was massage.  In this blog I describe what happened when I sampled massage again several years later with different expectations and a different level of commitment.

Massage

The lights of the massage room had been dimmed to provide a soft and comforting environment.  The feel was completed with new age music playing softly in the background.  The massage therapist knew that I had been here for a massage once prior several years ago and then without explanation did not return. He looked up from his folder, that he had been reviewing since I had entered the room.  He now asked me why I had returned after such a lengthy period.  I shared that I had an extremely sore shoulder that had been with me for several months and that I hoped that just maybe massage might help that.  I added also that I hoped that I might also get some relief from my Parkinson's tremors since things were worse now than just a few years ago.  I find myself having followed the path of taking more drugs than I would really desire and wonder whether massage could least slow that process.  I failed to add another reason that ranked among things that were important, that is that my wife really believes that massage might help and that I had not given it a fair chance.  He said little that I can remember but wrote something down in his notes and closed his folder.  He told me where I could put my clothes, explained how to lay on the massage table and exited the room.  I removed my clothes as instructed and shakily climbed up on the massage table and covered myself with a flannel sheet.  Lying faced down just myself and the new age music in the background I tried to relax and waited for his return.

He did return in a few minutes and noticing my fluttering and tremoring hands went to work on them.  He explained that by stimulating accupuncture pressure points along the way as he massaged the large muscles he might have some impact on nervous outflow which in turn should relieve the tremors.  He continued massaging the major muscle groups while occasionally pressing hard on accupuncture points until it was a little bit uncomfortable but at some point he at least slowed the tremors.  Then he spent extra effort on my sore shoulder, massaging it deeply and rotating the arm itself.  I experienced some discomfort in this but I did not complain.  He ended with my feet and pressed deeply in the arches and pulled them until I could feel a stretching in my back. After nearly an hour he declared the session over and returned after I had dressed.  I told him that I felt well and perhaps even good but silently I had no illusions about lasting relief for either the shoulder or or my tremors.  The tremors had stopped during the course of the massage but were already reappearing like weeds that stubbornly return after being pulled.

I returned at two week intervals for a couple of months and have continued that up to the present time.  At each appointment the massage therapist asks how I have felt in the previous weeks at home.  He makes notes in his folder after my response and begins the massage with some adjustments to what he does.  It took multiple visits to achieve a state of muscular and mental relaxation that was significant enough to have an impact on my sore shoulder and my tremors, but it did come.  As the weeks passed the therapist spent extended time massaging tightened muscles in my chest, back and neck.  The excruciating sore shoulder was now minimally sore. With time and multiple visits I found that I could achieve  the kind of relaxation via massage that not unlike sleep, suspends the tremors completely for short periods of time.  My wife believes that the muscular relaxation has improved my posture as well. I could add that I also believe that it enhances the effectiveness of my medication.  For these things and for even a short period of time when I feel free from tremors, the massage at $60 is worth it.

  Now when each session is finished I feel completely relaxed as I get dressed.  I comfortably walk out to the front desk and write a check for the massage with handwriting that looks as good as that on checks I wrote some years ago.  Some tremor returns by the time I reach the truck but as I ride home I cannot deny that I feel good and the tremors at least for a short period are not significant. 

Shaky

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

Walking in Florida

This morning we took a walk. Daughter, Grandkids, Carolyn, myself and a black dog named Harley. Our destination was Starbucks in downtown Hollywood, Florida. A cool breeze brought to mind the dangerous cold that has descended on the country further North from the East coast to the Midwest. Here in South Florida the chilly breeze was softened by sunny warmth, swaying palm trees, lush tropical yards and a perfectly blue sky accented by puffs of white.

I brought up the rear of this unlikely parade. Arms swinging unnaturally stiff with hands fluttering at their ends like leaves on a branch high in a tree. So we walked, stopping occasionally to allow Harley to apply her signature by way of a pee. It could not have been more pleasant anywhere that I could possibly imagine.

Those of us who live with PD are never completely free from it or at least thoughts of it. And so the pleasantness of my surroundings gave way to thinking of PD issues that have crept in to incite a personal struggle recently. This being ropinirole and its list of secondary side effects. These side effects have moved beyond words on a product insert to disheartening reality. The troubling list includes dizziness or low blood pressure episodes, uncontrollable tremors, shortness of breath, chest pain and compulsive behavior.

My mind switched away from self as we approached Starbucks, that great coffee house that had been unleashed on the world from Seattle way back in the 1970's. 30 bucks later we were well equipped with coffee and treats. Starbucks is not for the thrifty minded. We took our troupe across the street to a park and playground where the children played while we enjoyed the coffee and the unique respite in the sunshine.

The children and their parents were a delight to watch. It quickly became apparent that this South Florida playground was a world playground. A simple kind of harmony played out in front of us in form of children from Europe, Latin America and America joyously playing side by side. The children were carefully watched and fawned over by a mix of generations from parent to grandparent. I reflected on the short span of life we are given as I enjoyed the sight of these beautiful children who will grow to adulthood soon enough and carry the responsibility of adults.

The sun is slowly sinking as I sit on the patio and tap out the remaining words of this post with trembling hands. Thinking of the children a sweet rhyme comes to mind:

"Red and yellow black and white
They are precious in his sight
Jesus loves the little children of the world."

Reassuring.

Shaky temporarily in Hollywood, Florida

John