Deep Brain Surgery - Cognitive Testing

A sight to remember  -  Port Angeles, WA.  11/14

After an early morning drive down to Seattle amongst heavy traffic, Carolyn and I sat together in the neurology waiting area patiently listening for my name to be called.  Ahead were 4 hours or so of both cognitive and memory testing intended as part of the selection process for deep brain surgery. Cognitive functions include much of our thinking capabilities.  This means long term memory, working memory or executive memory, creativity, judgement and much more. 

I once regarded this testing as a small step in the path that could lead to deep brain surgery(DBS)but now it seems to be much more.  If the test shows evidence of cognitive decline and memory loss it likely would mean disappointing results from the surgery and probably a worsening of cognitive function.  It also may mean a tough time dealing with and cooperating with "awake" surgery.  It may also mean difficulty dealing with the complexity of the process of deep brain surgery period.

It always feels good to be in Seattle regardless of what brings us down here.  I lived here for a short while in the 70's and it was here that I met Carolyn.  We enjoyed the perfection of physical health and youthful minds that were ours for that short period of our lives. Now I recognize that at least some of that is slipping away but I will always remember that Seattle was our city for a short while.  Lucky me.  The girl I love still sits by my side.

Tucked in my briefcase are 3 sets of paperwork.  The first set of paperwork included questions for me to answer and were intended to obtain an up to date medical history.  The other two sets of questions were identical.  One for me and one for Carolyn.  These sets included questions that were geared to finding out what we both had observed about my current mental status.

The questions included things like:

     Am I still able to manage our finances?

     How many items can I remember to get at the grocery without needing a list?

     Am I still able to drive?

     Do I have trouble remembering details of recent conversations?

     Have you ever used mind altering drugs?
     Do you consume alcohol?

      And so it goes.

My name was called well before my scheduled 8:30 appointment and both Carolyn and I were taken back to a small exam room.  We waited for a few minutes and two attractive women  entered.  The older, in charge of the test, introduced herself and was a doctor.  She also asked permission for the younger, who was a student, to sit in and help with the testing.  I gave her permission to stay.

The doctor sat down in front of a computer terminal and pulled up my medical record for reference.  She then went through the observed mental status questions Carolyn and I had both filled out previously and separately. Her intent appeared to be, to fully understand what was behind our answers and to reconcile any differences.

I think that over the past several years I have noticed more frequent lapses in at least some of the areas questioned. I am not certain what this means.  The brain itself is so complex and is likely influenced by many things currently shaping my life.  Is it Parkinson's?  What about aging or even lack of sleep?  Is it some sinister side effects of the medications that I take?  Each of the drugs I take for Parkinson's is targeted at the brain or central nervous system and probably have some effect. How can these things be sorted out?  Do they need to be sorted out?

After the questions were reconciled and the interviewer believed that she understood the answers we had given, she turned the actual testing portion over to the student.  The Doctor and Carolyn both exited.  

The student began by reading me a list of 7 words and then asked that I repeat them back.  No problem.  She then asked another question or two and then surprised me by asking me to recite what I could remember of the original 7.  Whoops, I must have missed the bit that said I would be asked to repeat those 7 words later.  I had made no mental notes and could not remember even one of the words.  Alas the student giving the test genuinely seemed to like me and was delighted when I was successful and appeared disappointed when I was not. So she gave me a second chance and we  repeated the process with a different list and I once again was asked to repeat what I could remember of the list later. I did better this time around but still found it difficult. 

As the test went on she asked questions to verify that I was oriented to time and place.  I did pretty well but occasionally got hung up a bit.  I did fine with President Barack Obama but could not come up with Joe Biden's last name.  Poor Joe his last name on the tip of my tongue but would not come.  Also I could not think of our Governor's last name either.  What does that mean?  Maybe nothing, I think it is compatible with my age to come up with name blocks. What I think may not matter and so the testing went on. I was shown patterns of geometrical objects and then asked to pick out similar patterns among different objects.  I drew stick diagrams from memory of stick diagrams I had previously seen.  I counted numbers backwards by differing increments.

Things went on and we finished up about lunch time.  The doctor in charge returned and said that it may be a month or so for the results to be ready.  So what then?  There may or may not be a decision for myself and Carolyn to make about deep brain surgery.  They either will pass or fail me to move on toward surgery based on the test results.  For now I am perfectly happy to simply wait.

Shaky in Coupeville

The Winds of Change Are With Us

Come gather 'round people

Wedding Day 1977

Wherever you roam

And admit that the waters

Around you have grown

Bob Dylan

There are periods of life when things appear to be finished.  I feel like the last new era has dawned and is destined to go on forever. I think to myself, my time has finally arrived and "this is it!"

There was the 70's.  A period of time when the college years were left behind and I moved into the era of youthful early career.  I was one of the "fair haired boys full of dreams and promise."  I thought to myself "Hey, it is always going to be this way, isn't it?"  

The 80's approached and I found love and there was a wedding and babies.  I would always be a young father and "why wouldn't I think that?" 

I ushered in the 90's and the pace picked up.  The kids were in school and I had a home to keep up.  And oh yes there were bills to pay.  I thought, "now this is the real stage of life that will not end." Of course it ended and the truth that  I was beginning to see was that each stage simply moves faster than the last. Each bringing things I never thought possible in the previous one. 

Now I am older and find myself in a late stage of life among the silver eagles.  I ask myself, "How did I ever become a 65 year old man with Parkinson's?"  There is no answer to that question, so I decide it best to leave it behind and move ahead.  Parkinson's is a disease that has threatened to take away from life as it moves ahead at its insidious pace.

I want this to be a message of hope and I believe that the "Times They Are a Changin".  These changes are being ushered in by fair winds that promise to help many.  Medicine is moving alongside Parkinson's at a pace not dreamed of just a few years back.  Browse the links I have included and I hope you, as I have, will find encouragement.  These are links to only a small sample of an explosion of new information being discovered about Parkinson's and shared instantly by way of the personal computer.

And accept it that soon
You'll be drenched to the bone.
If your time to you
Is worth savin'
Then you better start swimmin'
Or you'll sink like a stone
For the times they are a-changin'.

Come writers and critics                     

Who prophesize with your pen

And keep your eyes wide

The chance won't come again

Don't speak too soon
For the wheel's still in spin
And there's no tellin' who
That it's namin'

Read more: Bob Dylan - The Times They Are A-changin' Lyrics | MetroLyrics 

From Bob Dylan "The Times They Are A-changin"

Still Shaky in Coupeville

Parkinson's Vaccine Looks Promising

Phase 1 trials in this Fox foundation funded study were intended to ramp up the body's own defenses against the damaging effects of alpha synuclein.

Deep Brain Stimulation Improves Survival in Severe Parkinson's Disease

Bilateral subthalamic nucleus deep brain stimulation (STN-DBS) has been shown to improve motor function, motor fluctuations, health-related quality of life, and to reduce medication usage and drug-induced dyskinesia in patients with severe PD refractory to medical therapy.

Intel Explores Wearable Devices for Parkinson's Disease Research

Intel Corp plans to use wearable gadgets such as smart watches to monitor patients with Parkinson's disease and collect data that can be shared with researchers.

One-Two Punch for Parkinson's

Researchers from the Florida campus of the Scripps Institute have found a dual-inhibitor compound expected to counter Parkinson's in 2 separate ways simultaneously. 

Bee Venom Acupuncture shows promise in Parkinson's

Both acupuncture and bee venom acupuncture showed promising results in improving symptoms among patients with Parkinson's disease in a small new study.

Regular brisk walking helps Parkinson's patients make strides
Regular brisk walking may improve motor function, mood, tiredness, and fitness in patients with mild-to-moderate Parkinson's disease, a new study suggests.

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

That Thing About Drugs

Mount Baker in Spring from Whidbey Island

There is a certain clarity that comes with rising in the small hours of the night. The hours when the silence is broken only by sound of your spouse breathing or the movement of yellow dog Bella as she turns over in a dog's blissful dreams.  I creep out of bed and position myself in the stuffed chair next to Bella. I open my IPAD and begin to think about why I am awake at this time when most people are asleep. 

I am awake because this is one more piece of this puzzle known as Parkinsons. Since the earliest days of PD I have awakened around 1:30 or 2 AM, often unable to return to sleep.  Frequently I wake up in the midst of a stage  of sleep known as REM sleep. REM is that period of sleep when when your eyes move rapidly and dreaming occurs.  In this stage the brain somehow finds rest while it links confusing pieces of information into a story of sorts. These dreams have been especially vivid for me and I sometimes wake up when I am acting out some portion of the dream.

One night I found myself being pursued and desperately trying to escape the pack competitors in a roller derby.  I woke trying to hold back the pursuing pack on roller skates by slugging away with an elbow. Strangely I am neither a fan nor have ever had anything to do with roller derby.  They say that usually the brain has a barrier that wakes us up prior to becoming physically engaged with a dream.  In Parkinson's that barrier has been removed or at least messed with and so I have reached, kicked or slugged as a dream is happening.

  

Another  dream brought back a friend who was once a part of every day nearly forty five years ago. This friend vividly jumped to life in my dream as if 45 years time had never passed.  All was not well in the dream however and there was conflict of some kind between us and we were once again separated. I have few clues to why we were destined to separate both in the dream and in life.  I awoke briefly but I returned to sleep and the dreaming continued.  This time I searched for land to live on in the years of life that I have remaining.  I found myself quietly farming and trimming fruit trees alone.  My wife was gone, no children were present, nor friends. A sense of sadness persisted from the previous dream. I found myself wondering how I would I find friends at this late stage of life and it troubled me.  A fog of gloom  and sadness had spread around me as I woke up.

Our patterns of sleep may modified by Parkinson's itself or by drugs intended for the purpose of inducing sleep.  Changes may also be due to side effects of a drug never intended to influence sleep.  For myself this is likely the case and it began a few months ago when I added a drug called Artane for tremors.  For tremors it was and is helpful.  Without explanation though both the early awakening and the vivid dreams stopped.  I assumed that the better night's sleep was due to the addition of Artane since I knew that Artane could cause drowsiness and thereby assist sleep.  Nice! But I also was puzzled by the disappearance of my vivid dreams or any dreams.  I found among the list of side effects that Artane not only causes drowsiness but also suppresses REM sleep.  REM sleep is quite important to achieving the natural restorative sleep the body needs.  More sleep but lower quality of sleep has been a concern with sleeping pills for a long time.  Now on Artane I sleep longer but seem to be nearly for as tired as when I woke early every day.  There is little doubt that Artane has been very helpful for tremors but hidden among the side effects there is a price to be paid. It would seem that more sleep also means lower quality of sleep.

Shaky in Coupeville

Some gotta win, Some gotta lose

Got my pills to ease the pain,
Can't find a thing to stop the rain
I'd love t'try and settle down,
But everybody's leavin' town

Some gotta win, some gotta lose
Good Time Charlie's got the blues
Good Time Charlie's got the blues
Danny Okeefe

I have come to believe that a significant piece of Parkinson’s is about being tired.  Being tired because I have not slept well or maybe it is the drugs or is it that PD effectively places some kind of drag line on my body. I wake up every morning, take my pills and give the best I have to battle a losing cause.  When I awaken it takes time for the shakes to begin and it also takes a while for the drugs to be absorbed and begin their assigned tasks.  Once that time has passed there are days when I can feel their soothing influence sweep over me.  I put my hand out in front and look at it and then I pick up my coffee cup and say for the umpteenth time, “look, no shakes”. With the good unfortunately there is usually a wave of not so good. On those days a fog of tiredness accompanies the relief from tremors and makes me want to return to bed.  There are other mornings when lightheadedness demands my return to bed until it passes.  Once in bed it is a great feeling to stretch out and remove every bit of excess strain and to feel released from PD if even for a short while. 


As the day progresses there are windows of time when the drugs can be remarkably effective and I find myself wondering why all the fuss?  So why have I quit driving?  I look beside my desk and am soothed by the sight of my sleeping yellow dog at my feet.  She rests in complete peace, she lives for the day to day and never questions God’s justice.  Upstairs is my peacefully sleeping wife who also does not question the perfection of God’s justice either.  Their love, His love, for me has never wavered and I feel humbled and selfish when I think of them.  I also feel very tired and desire the rest that only sleep can give and at times PD can make very hard to get.

Shakey in Coupeville

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

The Wind Storm

Forecast: 1/10/2014

* Wind... southeast wind 25 to 40 mph with gusts to 60 mph are 

forecast to occur tonight. The winds will shift to westerly 

Saturday afternoon and could reach 25 to 40 mph with gusts to 

60 mph late Saturday afternoon and night. 

* Impacts... downed trees and power outages are likely

I awoke to the beep the electric smoke detector makes when the power goes off.  I thought that a flash of light had also lit up the room but now I am not certain of it. There was complete darkness with the the power out but not silence.  My ears were assailed with the roar produced by a strong wind running through the fir trees that surround our house. The loss of power in a windstorm on Whidbey Island is not unusual.  The wind separates branches from tall evergreen trees and sends them flying into power lines.  A windstorm of this magnitude with gusts pushing close to 60 will frequently cause our power to go down.

Carolyn had awakened as well and noticed that Bella, our yellow dog, was not in her bed. Bella is frightened by windstorms and usually attempts to climb in bed with us, however tonight she had gone downstairs and wanted out. Carolyn slipped out of bed, put on her robe and went downstairs to tend to her. 

I lay motionless except for the twitching of my tremors and listened to the storm rage outside. Frequent gusts pushed it to a higher pitched sound accompanied by a spraying of the roof with debris from the trees.

Doug Firs near the North end of our house

Soon I could hear Bella breathing rapidly and the sound of her paws on the stairs as she and Carolyn returned guided by flashlight. Carolyn moved Bella's bed closer to ours and then got back into our bed.  She continued to pet and gently sooth Bella. 

 The weather forecast had predicted this storm and I had prepared for it. I purchased additional batteries and checked to make certain that my flashlights were ready.  I had split and brought in plenty of wood so that power out or not, the house would be warm. In spite of such preparation, a wind storm makes me uneasy, making any effort to return to sleep kind of tough.  I lay in bed and wonder whether the big Doug Firs near the North end of our house will stand another storm or this time will they give up and come crashing through the roof?

I sensed the change in Carolyn's breathing as she returned to sleep. Bella's unease continued and so did mine. 

Now the howling wind outside induced a disturbing sense of loneliness.  My mind drifted and I wondered about friends who had long ago been an important part of my life but now I do not even know where they are.  Whether they are alive or dead. I thought of my cousin Larry who passed away just a few days ago. Little more than a year ago at a family reunion he had stood like a majestic tree surrounded by his beautiful family.  Now, the storm of cancer has taken him from this life on earth. Even as I believe that death is not the end a deep sense of sadness enveloped me.

I listened for any change in the intensity of the storm and determined a perceptible decrease in intensity had occurred. I repositioned Bella's bed and put her closer to me. I am not certain which of us soothed the other the most. 

Then the smoke detector beeped and the night light blinked on. Our power was back! This positive sign lifted my spirit a from the gloom and I slipped out of bed pulled on my robe and carefully made my way downstairs. I celebrated the return of our power with a glass of water and gave Bella, who had faithfully followed me down, a piece of string cheese.

Good night!

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

To Seattle with Heart

Carolyn carefully maneuvered our Toyota pickup across several lanes of busy traffic and then moved on into the commuter lane as we traveled south toward Seattle, on Interstate 5. This Friday morning I had two appointments in Seattle at the VA Medical Center on Beacon Hill. My first appointment was to have my lung function tested and then immediately following that test I would have a cardiac nuclear stress test. Both of these tests had been ordered due to previously measured low blood oxygen saturation of 89 coupled with chest pain and breathlessness on exertion. We were one among many cars speeding down the Interstate toward Seattle.  The view down the freeway was inspired by the hazy silhouette of Mount Rainier visible directly down the highway.  The mountain is a prominent icon of the area and was basking in the early morning sun as lines of cars roll toward the city of Seattle.

I do not drive much anymore due to a combination things. Primarily it is because my tremors are a difficult to manage distraction while I’m trying to drive.  There is also the more subtle issues that accompany many of us who have Parkinson’s such as: slow response time, difficulty processing multiple data input and increasing difficulty making decisions. Carolyn and I had been warned by my neurologist that my diagnosis could be used against me in court if I had an accident whether I was actually at fault or not. So, Carolyn now does most of the driving and fortunately she is very good driver and actually enjoys it.  When we go places I am now free to sit and watch the scenery and the traffic roll by my window and think of whatever I wish. I usually think that is a good thing but sometimes I withdraw quietly and think about life before PD.

Seattle is a special place for us and we look forward to returning whenever a reason of any kind presents itself.  Thirty six years ago I was working and living in Seattle when I first met Carolyn.  She was an active duty Army nurse stationed at Madigan Hospital at Fort Lewis which is a bit further down Interstate 5 near the city of Tacoma. In those days I ventured down there once a month to work in the hospital pharmacy on my reserve duty weekends.  On one of those weekends we were introduced by a coworker of hers. Things took off from there and Seattle was as romantic as Paris for two who would fall in love and pledge their lives to each other.

This morning Carolyn was driving her 64 year old man with Parkinson’s to the VA Medical Center in Seattle for tests to determine whether lung and heart disease were also part of the mix. I am thankful that I am not alone at this stage of life and that my wife of many years remains committed to our lives together. I reached across the cab and slipped my hand under her thigh for a little help calming my tremor and for a bit of a lift from the energy that still flows between us when we touch.

We passed through the center of Seattle and exited the freeway and began the climb up Beacon Hill where the VA Medical Center is located.  After finding a parking spot in a visitor’s lot placed well below the medical center, We gathered our things and started up the hill to the hospital. It was a short walk that felt long. My body responded to the uphill exertion with increased tremors and tightened muscles in my upper arms and across my chest.  This soon became breathlessness and chest tightness.  I had to pause occasionally to catch my breath and to wait for the discomfort to subside. Carolyn stopped with me and encouraged me to take deep breaths.

Once we entered the VA Medical Center we did a bit of wandering around looking for the pulmonary lab, my first appointment.  As had been our experience in the past, navigating the maze was not a problem. We found  helpful staff along the way and actually checked into the pulmonary function lab early.

The pulmonary(lung) test lab was tucked in a room somewhere deep in the medical center with no windows to the outer world. In spite of the windowless dreary surroundings the pulmonary tech was upbeat and proceeded to guide me through a variety of tests intended to determine the state of my lung function. By measuring the amount of breath I could breath out and how rapidly I could do it, it is possible to determine whether the major enemies of lungs are present: COPD, asthma or pulmonary fibrosis. I gave it everything I had and to my surprise I did very well.  Finishing up the technician clipped a pulse oximeter on my finger and read the results.  Ninety eight she said and then added, “just perfect.”  She pronounced my lungs to be in good shape.  I returned to the waiting area a bit puzzled since two previous measurements at routine appointments had been in the high 80's. Not good numbers. I gave Carolyn the current good news that my lungs were healthy and we moved on.

For the heart part we went to nuclear medicine for a cardiac nuclear stress test.  This test provides visual images of the heart both at rest and while under stress. It provides a picture of whether blood is flowing freely to vital areas of the heart when placed under maximum stress. For this I was taken to a test room with a medically wired treadmill designed to monitor EKG, heart rate and blood pressure during the stress part of things. In the same room there was also a large scanning device that produces images of the heart by sensing a radioactive dye injected intravenous and then taken up by the heart tissue.

The nuclear medicine technician placed an IV access in my right arm and then injected the radioactive dye. I went back to the waiting room to wait until the dye distributed in my cardiac tissue.  As I waited I tried to read but I was absorbed by the sights and sounds of the VA. The pain and suffering on display is sobering.  There is a steady stream of vets constantly moving throughout the facility to make their appointments for treatment or diagnosis.  Young vets and old vets. Often very disabled, they are aided by the help of people, wheelchairs, canes, walkers, artificial limbs and their own will power.

I was called back into the scanning room for the resting cardiac scan. The technician directed me to lay down on a narrow horizontal platform with a support for my head. He made me as comfortable as he could and then briefed me on the importance of remaining still.  He explained that the machine would move me into position and then would begin taking a series of cross sectional pictures that a computer would assemble into a 3 dimensional image. 

I was at rest and my heart was at rest as the machine transported me on my skinny bed into position for 30 minutes of cross-sectional heart scans. I had been instructed not to go to sleep since sudden awakening could allow me to jerk and spoil the results. Nonetheless I did fall asleep. I could feel that strange sensation of calm and diminishing tremors that precede sleep as I was transported into the machine. Fortunately I woke up without movement and after the scan’s completion and review by the technician the pictures were pronounced successful.

After a short delay I was introduced to two nurse practitioners who were going to carry out the next phase of things. One was learning by observing while the other was a veteran of such procedures. This part of the test consists of walking a treadmill while both the speed and the incline on the treadmill are systematically increased until you reach a predetermined maximum heart rate. At this point the heart releases a potent natural venous dilator, adenosine, which opens up the blood vessels to allow increased flow of blood to the heart. The nurse carefully questioned me to determine whether I was healthy enough to endure such a test. There is a back up for those who are not up to the test physically. For those patients one of several drugs is injected IV to simulate the natural response of a  heart under stress. I passed and was allowed to walk the walk.

Once I indicated that I was ready, the treadmill started moving and I started walking to keep up with the movement. At first it was easy. The nurse asked me if I was ready to pick up the pace and I responded, “yes.”  Things became progressively more difficult as the process was repeated.  The monitor allowed me to watch my heart rate as it moved upward: 100, 110, 120. One hundred thirty three was my target and as I approached that number I was really struggling with rapid breathing and tightness around my shoulders neck and chest. I pressed myself to keep walking and told myself, “I can make it.”  When I thought that I could go no further my heart rate shot past 133.  The nurse carefully slowed the treadmill while I kept walking.  I was now weak and hanging on to the support bars of the treadmill breathing deeply and thankfully recovering quickly.  Any delusions I had about still being young were swept away.

The nurse examined the EKG tracing generated on a paper strip and said that she could see no problems.  That was good news, my 64-year-old heart has still has solid wiring as indicated by no EKG abnormalities showing up even with high level physical stress.

The last scan is intended to identify areas of the heart that might not be getting the vital flow of needed blood when under stress and would be interpreted in light of the first. The procedure was a carbon copy of that used for the first scan.  After completion I returned to the waiting room to wait for preliminary results.  Little time passed so I was caught a bit off guard when the technician reappeared and announced to Carolyn and I that the initial results including the image of my heart under stress showed nothing major. "You are free to go home," he said.  A heart felt thank God entered my mind. The results will later be reviewed more fully by a cardiologist and if anything else is found I will be notified by my family doctor.

That was it. We packed up our things from around the chairs we had been sitting in and got ready to make the long trek home to Whidbey Island.

Now we traveled northbound on interstate 5 as we retraced our journey of the morning.  Mt. Rainier was at our back and my faithful driver was once again at her task.

I fully understood that doing well with these two tests now freed me to pursue as many physical activities as myself and my Parkinson’s would permit.  Still troubling me though is that I have no specific reason to explain the symptoms. The low blood oxygen values that had appeared at previous routine visits and the breathlessness and chest discomfort are very real.

It would seem reasonable that new symptoms of any variety might lead back to Parkinson's in one who has the disease. I wondered how could that be for cardiac and lung issues?  After some internet research I found that Parkinson's no stranger to these issues.  Respiratory difficulties have been specifically correlated with the wearing off periods of dopamine therapy.  The Parkinson's connection with respiratory difficulties is left until the more likely and sometimes more deadly issues of lung and heart disease are ruled out or dealt with.  I had once read that prior to dopamine therapy that Parkinson's was a sentence to early death due to respiratory failure.  If you have further information on this leave me a comment or contact me.

I have included excerpts and links to two sources that identify potential links to wearing off of drug therapy and shortness of breath.

Shaky in Coupeville

http://forums.webmd.com/3/parkinsons-disease-exchange/forum/535
"Respiratory symptoms in PD are not rare, and may sometimes be linked to medications. Some people report shortness of breath (SOB) and wheezing that occur with exertion more than while at rest. These type symptoms have been linked to dopamine agonists in the past, but the newer agents, pramipexole and ropinirole, do not seem to have these issues."

http://www.ncbi.nlm.nih.gov/pubmed/19715385
"Although levodopa is considered the gold standard for Parkinson's disease therapy, prolonged use of this drug can result in motor complications such as a 'wearing-off' phenomenon. This outcome is seen in a significant number of patients with Parkinson's disease taking levodopa and, in some cases, is observed only a few hours after intake of the last dose of levodopa. Patients experiencing the wearing-off period may present with sensory, autonomic, psychiatric and motor fluctuations. Although infrequent, shortness of breath is an important non-motor wearing-off symptom experienced by patients with Parkinson's disease. In addition to being a symptom induced by wearing off, other causes of shortness of breath include pulmonary diseases, coronary artery disease and anxiety. Thus, it is important to identify the cause of shortness of breath to ensure that the appropriate treatment is initiated."