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."

Pigeons, Malathion and Parkinson's

Frosty, Specks, Skipper and Dunne      1963

Introduction

This essay recalls a memory of precious childhood pets.  Their care led me into the improper use of a toxic pesticide that has been implicated as a possible contributing cause of PD.  Of course this one incident may mean little and yet across a lifetime many such events could have a cumulative effect.

 Pigeons, Malathion and Parkinson's

I looked up at the darkening sky to see if any of my pigeons were still flying. I could see none but when I looked across the pasture to their pigeon coop I could see that one or two were still lingering by their small hinged entry door near the top. Then I walked across the yard and followed the path around the pasture fence to their coop so I could close them in for the night.  By the time I got there the last couple of birds had already walked through the door and had found a place on a roost.  I closed them in and opened the larger door to the loft.  I sat down on the edge of the entry so I could be quiet and spend a little time with them.  Pairs of Pigeons settling for the night convey a special kind of peace that was soothing for my young soul. Many, many nights the birds appeared to listen in silent reverence as I shared the dreams, frustrations and crushes of a boy just entering his teens.

I leaned over and picked a white speckled bird I called “Frosty” from his roost and held him gently but firmly. Frosty was my favorite and 50 years later he retains that status in my mind.  That evening my eye caught sight of something dark and threatening moving on his breast. It was a bug of some kind that did not look at all friendly.(feather lice)  I spread his wing out and found that the bug had plenty of friends. Unfortunately poor Frosty was crawling with lice.

The following day after school I looked at the rest of my birds and found that Frosty was not alone. Most of them were infested with the bothersome lice. I do not recall that I consulted any adults about this problem and I do not know why that I proceeded on my own but I did.  I went to our farm shed, which at the time I thought held everything one might need to keep a part time farm running.  A former chicken house, the shed was kind of dark and dusty and held a mixture of tools, paint and chemicals of various kinds.  I prowled the shelves looking for something I could spray or sprinkle on the birds to kill the lice.  There among the dusty bottles of chemicals, paint and various tools I found a box of powdered  bug killer.  The box was labeled to kill a long list of troublesome bugs that I thought surely included those on my pigeons.

"Baldy"  1963

I picked up the box and carried it straight to the pigeon coop.  I caught each bird and liberally sprinkled the bug powder over each one of them. I also missed some of the time and sprinkled it on myself, a sort of collateral damage.  I had no protective clothing and latex gloves did not seem to be around back then.

At routine intervals the lice would return and I repeated this process many times.  Eventually the inevitable happened and my Dad saw me with the box of bug powder and asked what I was doing with it. I said that I was sprinkling the powder on my pigeons to kill the bugs I had found on them.  I was really quite proud of myself.

I still remember the surprised look on his face when he heard what I was doing.  I also remember the way he shook his head when he said, “you are lucky the pigeons are not dead, that box contains pure malathion powder."

Fortunately the birds did not die but I had added one more careless exposure to myself and had risked my pigeons by improperly using a pesticide that is now believed to be one of many chemicals associated with PD.

Malathion is an organophosphate insecticide. It interferes with the nervous system by blocking an enzyme that normally acts as an off switch by ending the signal. Without the  enzyme, the nerve keeps firing and eventually the nervous system fails. Malathion is used both in agricultural and residential settings.(National Pesticide Information Center)

Pesticides, Family and Rural Life

My brother, mother and I  circa 1955

Heredity, genes and environmental toxins are keys to understanding what is currently known about the cause of Parkinson's Disease.  In my personal quest for cause I have examined how my life history of exposure to environmental toxins fits in with the factors listed above. 

The Search for Cause
It is known that a small percentage of patients acquire Parkinson’s by directly inheriting it. The inherited disease is usually seen in families of Mediterranean descent who carry specific genes that produce it. (Tanner 1)  Genes are the working units of heredity and each contains DNA coded to manufacture protein for a specific purpose. Inherited genes that cause Parkinson’s are called causal genes. Causal means that If you inherit one of them you will get Parkinson’s. It will need no help from any outside source. (Gwinn 1) 

In the majority of cases of PD the cause is more of a mystery and requires a bit of speculation based on information that is currently known.  With this in mind it is now believed that both environmental and genetic factors play a role in causing the disease in non inherited PD. (Tanner 1)  Specific gene variations have been identified as being associated with PD. These genes alone are not thought to cause the disease independently. It is believed that these “associated genes” must combine with environmental toxins and/or other genes to cause the disease.  Those who have these genes may never get PD but they may. (Gwinn 1) (Tanner 1) Once the damage is done to associated genes and the process known as Parkinson’s is set in motion it cannot be stopped.  

Environmentally a number of specific chemicals and occupations that put people in close contact with them have been linked to a higher risk of Parkinson’s. Possible chemical exposure and increased PD risk frequently appear in the news media and literature. Pezzoli and Cered, after an extensive review of controlled studies of PD and chemical exposure concluded that:

PD risk was increased by exposure to any-type pesticides, herbicides, and solvents.  The risk associated with rural living was(also) found to be significant.

Other substances that have been identified with increased risk of PD include fungicides and the villain of Vietnam, agent orange.  A drug of abuse called MPTP is known to produce Parkinson’s by itself.  Recently welding has been identified as a higher risk of PD occupation

With this information in mind I reviewed periods of my life in an effort to highlight how easily exposure to chemical risk factors for PD may have occurred.  Keep in mind that many of these things happened a long time ago and my memory creates an approximation at best.

Rural Living
My family moved to a small acreage when I was 5 years old.  Our new home had a beautiful cherry orchard on it and the orchard was a source of both pride and supplemental income for our family. Unfortunately A major freeze in 1955 killed all of our trees. Dad was a determined man and he soon replanted the acreage with new trees and Cherries remained a part of our lives. 

Organic was not thought of in the 1950's and difficult pests such as the cherry fruit fly mandated  insecticidal spraying at routine intervals. My Dad paid a man to do the spraying in the early years.  When I think about it I can still see the man arriving on his tractor, clothed in rain slicker clothing and towing a big tank full of spray on wheels.   A noisy pump was attached to the large tank of spray and it powered a sprayer behind the tank that produced a soaking fantail of pesticide spray.  The man would start the pump and then slowly drive the tractor with its fountain like sprayer up and down each row of trees, soaking everything on both sides. My mother did what she could to protect us from exposure to the spray and kept my brother and I in the house while the man did his job.

I spent endless hours in the cherry orchard in my childhood years. I recall eating ripening cherries, that still had the dried spray patterns on their skins. I had been warned about spray, but I rarely bothered even to rinse the cherries I picked from the trees.  Myself and other neighborhood children played in the irrigation ditches that ran down the rows of trees as if they were clean mountain streams.  We swam in the open irrigation ditches that ran through nearby farmland.  The ditches without doubt carried agricultural chemical carrying runoff.  I could easily say that my childhood years in rural eastern Washington were something very special.  I could also say that due to my own carelessness those years were loaded with exposure to significant quantities of pesticides and other farm chemicals. I never imagined that there might be a day of reckoning much later in life.

So what about my brother who is four years older than me and is free of Parkinson’s?  Why would one who grew up next to me and is an agent orange exposed Vietnam veteran remain free of the disease?  The answer is likely found in the genes we inherited.  Just as I am color blind and he is not, I must carry the genes that when activated went on to cause the disease and he must not carry them.  Also I cannot think of any childhood friends who currently have Parkinson’s disease. This may mean that none of them possessed the genes either.  Even more important, I really do not know what happened to most of them.

Hospital Pharmacy
Other periods of chemical exposure also nag at me, especially the many years of working in hospital pharmacy.  In those years I worked around chemotherapeutic drugs and often reconstituted and prepared the drugs for administration. Exposure risks are very real in this environment. A group of Canadian researchers looking for contamination simply swabbed the hands of pharmacy personnel working in a chemotherapy preparation environment.  Detectable amounts of contamination was found. (Astrakianakis et al 1)  The protection provided for those of us who worked with chemotherapeutic drugs in 80's, 90's and even the 2000's was very inadequate by today's standards. 

I have to admit that I have not been able to find a connection between long term exposure to chemotherapeutic drugs and PD but I remain suspicious.  These drugs are highly toxic and both acute and chronic health risks have been attributed to them. (The National Institute for Occupational Safety and Health (NIOSH) of the Centers for Disease Control and Prevention (CDC)1)

I have thought of many additional exposures to chemical toxins in my life.  These span the home ownership years and range from diazinon to Penta, a now banned wood preservative. 

I am left to wonder how the things  we are learning about "causal genes, associated genes"and environmental toxins could be of value to others.  Therapeutic intervention in the roles inherited "causal" genes play in the genesis of PD will require further research.  The influence of the array of chemicals that have become environmental toxins have on "associated" genes can be modified at least in part by our own choices and actions.  More importantly we can have a part in warning the generations yet to come that poisoning our environment with environmental hazards is not without consequences.  And most urgently: Teach your children well.

Shakey in Coupeville



Sources

• What Causes Parkinson Disease?Medscape interviews Caroline Tanner, MD, PhD, on major advances in the understanding of Parkinson disease, along with potential therapeutic approaches. Medscape Neurology, July 2012

• Genetics and Parkinson's Disease: What Have We Learned?  By Katrina Gwinn, M.D.
Originally published in the winter 2009 issue of PDF's Newsletter, News & Review.

• Exposure to pesticides or solvents and risk of Parkinson disease.  Pezzoli G, Cereda E.Neurology. 2013 May 28;80(22):2035-41. doi: 10.1212/WNL. [PubMed - indexed for MEDLINE]

• Can J Hosp Pharm. 2011 Sep-Oct; 64(5): 327–332. Pilot Evaluation of Dermal Contamination by Antineoplastic Drugs among Hospital Pharmacy Personnel.  George Astrakianakis, PhD, Quinn Danyluk, MSc, CIH, Winnie Chu, Chun-Yip Hon, MSc(A), CIH, CRSP, is a PhD candidate in the School of Population and Public Health, The University of British Columbia, Vancouver, British Columbia. At the time this study was performed, he was also with Disability Management and Safety, Vancouver Coastal Health, Vancouver, British Columbia

• Welding Fumes May Cause Early Parkinson-Like Brain DamageA study shows damage to the dopamine system in the brain of healthy welders and manganese-laden fumes may be the culprit. News, Medscape Medical News, April 2011

New Life and Parkinson's Research

Fish on! Bill at Chopaka Lake, Washington

Refuse to be average. Let your heart soar as high as it will.
A W Tozer


The doctor, a movement disorder specialist at the University of Washington, looked directly at me and said "you have Parkinson's".  "Are you sure?"  I questioned.  He quickly responded: "as sure as a human being can be."  He then added that I was unique since I had presented without being on any medication.  His nurse who had hustled off a few minutes prior, now returned and handed my wife, Carolyn, a lot of stuff for us to read and watch at home. The doctor continued and said that I might be an ideal candidate for a new study being sponsored by the Michael J. Fox foundation.  He said the study is considered important and is ambitious.  He also added that they are looking for newly diagnosed patients who are not yet on medication.  He explained further, that if I chose to participate, I would be asked to wait for 6 months prior to starting any medicine and then added, "if you can stand to wait that long."

Once home the materials the nurse had gathered for us at the clinic were helpful and contained significant details about the Fox foundation study and I learned it was called PPMI. PPMI or Parkinson’s Progression Markers Initiative is a broad multi site study with locations in the United States, Europe and Australia.  It has been designed to search for biological markers that would indicate both the presence and progression of PD. A valid marker when identified would be valuable in diagnosing the disease early.  Perhaps more importantly it could be a breakthrough research tool for use in drug trials aimed at determining whether medications actually act to modify the progress of the disease.  These are ambitious goals.  The study uses neurologic imaging, blood, urine, spinal fluid and clinical and behavioral tests in the quest to achieve their goals.

Among the materials I had been given I found that the Washington State Parkinson’s Disease Registry collects information about PD patients and then as appropriate connects them with the research community. I punched in the number.

 The Registry was my first contact with anyone connected with Parkinson’s research and it was very positive.  The young woman on the other side of the phone call was personable and led me through a series of questions designed to identify the specific symptoms I was experiencing.  She asked my age and the date of diagnosis and who made the diagnosis and what other doctors had I seen.  I mentioned to her that I might be interested in the Fox Foundation study I had been told about by my doctor and she said she would contact them.

Shortly after that conversation I received a call from a representative for the Fox Foundation’s PPMI study center located at the VA Medical Center in Seattle.  She affirmed that they were recruiting newly diagnosed PD patients to participate and had more questions, similar to those I had previously answered for the Registry.  She finished up and invited me to come to Seattle for a thorough examination intended to verify my diagnosis prior to actual enrollment in the study.

Why would I want to participate in a study that would take five years to complete and would require many time consuming trips to Seattle? Additionally it would require that I submit to many tests through the years, some of which made me a bit uncomfortable. The tests included spinal taps on a periodic basis for the duration. Ouch! Choosing to do this would not be in character for me since I have been neither an activist nor an organizational joiner.  Yet facing a future that had suddenly changed the outlook of the days ahead, I found myself thinking differently.  Carolyn and I read Michael J Fox's Lucky Man and watched Back To The Future and Doc Hollywood.

I accepted the opportunity to go to Seattle for PPMI testing.  We looked forward to spending a couple of days in our favorite city.  That is the beautiful city of Seattle on Puget Sound where our youthful romance had first flourished way back in the 1970’s.  Now we were returning for me to be subjected to extensive neurological exams including a new thing called a DaTscan (A dye that enables imaging of recptors in the brain that provides an identifiable pattern for Parkinson's).  Each of these tests on this particular trip were intended to verify my diagnosis.  Once my diagnosis was validated I would be given the opportunity to  participate in PPMI.  The two days presented a fairly intense schedule.  In spite of which we still found time in the evening to take a walk among the familiar streets of the city and go to dinner but we didn't quite feel like we were in our 20's again.

Carolyn accompanied me through most of the testing and we both enjoyed meeting an impressive array of intelligent, caring and personable people associated with the study.  A few days after the exams were completed the phone rang and the voice on the other end informed me that I met the criteria for participating in the PPMI study.  So there it was, I was officially part of what could be a game changing research study and later I even managed to wait six months prior to starting medication.  I felt good about it then and I feel good about it now. It did however dash any thoughts I might have that this disease just might not be for real.

At the time of enrollment in PPMI I was also enrolled in a study being conducted by PANUC
(Pacific Northwest Udall Center) also located at the VA Medical Center in Seattle.  This study follows PD patients over time and collects biological, genetic, behavioral, cognitive and movement information.  The data gathered supports projects conducted by PANUC which focus on complex Parkinson's problems that include movement, problems with memory, thinking, judgement and behavior. For this study Carolyn was asked to participate as a non PD control.

This month I will return to Seattle for my yearly DaTscan*, lumbar puncture, blood draws and a neurological physical exam.  There will also be an array of cognitive tests intended to profile the current state of my thinking capabilities.  Short term memory will be carefully tested by way of an assortment of repeat back the numbers questions and how many details can you remember from a story just read to you and much more.  This exam will be very near to the two year anniversary of enrolling in both studies and I feel just as good about it today as I did then.

In my life Parkinson's arrived as a surprise.  One that makes me think of a June morning when a Chopaka Lake rainbow came up from hiding in the depths among the weeds, broke the surface, grabbed my fly and gave me the fight of my life.  As it is with believing there is power in the gospel, Parkinson's has given me purpose and rebirth while in my 60's.  Like Michael J Fox, "I am a lucky man."

Shaky in Coupeville


Still more:

 DaTscan

*This year the FDA approved DaTscan™ (Ioflupane I 123 Injection) for use to produce images with something called single photon emission computed tomography (SPECT) imaging. This substance permits the detection of dopamine transporters (DaT) in the brains of adults who may have Parkinsonian syndromes (PS). Dopamine is the essential brain chemical that when depleted causes many of the classic symptoms of Parkinson's disease.

DaTscan is the first FDA-approved diagnostic imaging agent to help physicians evaluate  and differentiate neurodegenerative movement disorders, such as idiopathic (of unknown cause) Parkinson’s disease.