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.

Fly Fishing for Parkinson's

Moonrise over Walupt Lake

It is apparent from the large amount of press generated that exercise has been a major focus of study within the Parkinson’s scientific community recently.  The results of many of the studies conducted have been positive and have shown up in the literature and media over the past several years.  It now seems reasonable to ask how important is exercise in the scheme of modern PD treatment?

When I recently typed Parkinson's and exercise into the Medscape search engine an impressive list of studies and "scholarly articles" popped up.  I scanned the list on my computer screen and virtually everyone of them claimed some sort of positive finding when a consistent exercise regimen is applied to patients with Parkinson's.  In view of this large array of positive results it seems that exercise should hold a prominent place in the treatment scheme of many if not all of us who have this disease.  Secondly there appears to be some form of exercise for everyone with PD.  You can think of nearly any form of exercise and a benefit for PD has probably been found. I will name a few picked out of the articles I pulled up: weight training(resistance), stationary bicycle, treadmill, Tai Chi, dancing, walking and there is probably a lot more. 

In search of the Cispus Cutthroat

It was however a bit of a disappointment that A favorite active pastime and healthy exercise of mine did not appear.   So I thought: what about fly fishing?  What if I get busy and organize a study comparing PD patients who fly fish with those who do not?  In light of the other studies that have been conducted I think it very likely that it would be beneficial to PD patients.  I could become famous and publish an article called Fly Fishing for Parkinson’s.  I might even get a call from Michael J Fox himself inquiring about fly fishing lessons. After all it isn't much of a stretch. Fly fishing is kind of a souped up Tai Chi.  Wading the stream would improve balance and leg strength.  Casting is fine resistance training and being intently aware of conditions and insect hatches couldn’t help but improve cognitive(thinking) problems.  Truly a can't miss for elevating the mood.  It has not hurt me!  It does help to have a helpful brother who ties my flies on when my shaky hands just aren't up to the job.

So go ahead and review the list of published articles I have included and then check with your doctor.  Are you physically able to start a routine that incorporates some form of exercise?  If you are physically able to do so the literature clearly suggests that you will benefit.  I have found that a recumbent exercise bike parked in front of the TV makes exercise very easy and safe to do.  I can then add a leisurely walk with my dog and yes an occasional fly fishing trip.

Shaky in Coupeville

The fountain of youth found

Randomized Clinical Trial of 3 Types of Physical Exercise for Patients With Parkinson Disease
Exercise can improve gait speed, muscle strength, and fitness for patients with Parkinson disease. The combination of treadmill and resistance exercises may result in greater benefit and requires further investigation.
JAMA Neurol. 2013;70(2):183-190. doi:10.1001/jamaneurol.2013.646.

Tai Chi Improves Balance, Reduces Falls in Parkinson's
N Engl J Med. 2012;366:511-519

Resistance Training Reduces Signs of Parkinson's
A vigorous resistance training program not only makes patients with Parkinson's disease (PD) stronger but also reduces signs of their disease over the long term, a new study has found.
American Academy of Neurology 64th Annual Meeting. Abstract #S02.003. Presented April 23, 2012.

Fast Pedaling Benefits People With Parkinson's Disease
People with Parkinson's disease benefit from pedaling on stationary bicycles, and those who pedal faster derive the most benefit.
News, Medscape Medical News, November 2012

Dance Therapy for Parkinson's Disease Dancing to a Better UPDRS
Can people with Parkinson's disease really waltz their symptoms away? Two recent studies suggest that dance therapy improves balance, bradykinesia, gait, motor functioning, postural instability, quality of life and other functional measures.
Medscape, Wilner on Neurology Blog, January 2012

Exercise, Behavioral Therapy Ease Incontinence in PD
Behavioral therapy using pelvic floor muscle exercises may help prevent urgency urinary incontinence episodes in older patients with Parkinson's disease.
News, Medscape Medical News, May 2011

It Is Not About the Bike, It Is About the Pedaling
Forced exercise intervention may improve motor function and central nervous system function in patients with Parkinson's disease.
Journal Article, Exerc Sport Sci Rev, October 2011

MDS 2009: Forced Exercise Provides Benefit Similar to Levodopa in Parkinson's Disease
June 15, 2009 (Paris, France) — Patients with Parkinson’s disease (PD) who exercise on a stationary tandem bicycle with a healthy partner during a single 40-minute session experience a 35% improvement in motor function and increased brain activation similar to that found with levodopa treatment, new research shows.

• Movement Disorder Society's 13th International Congress of Parkinson's Disease and Movement Disorders: Abstract LB-13. Presented June 10, 2009.

Shaky days

Today has been a difficult day.  The tremors are raging in both arms in spite of a second dose of carbidopa/levodopa. Earlier I went fishing for salmon along the Whidbey shoreline just a short drive from home.  I thought it might be the thing to relax and settle my body down. So Carolyn drove me. She intended to catch up on some reading while I stood on the beach and cast and retrieved for salmon.  The rhythm of fishing brought no relief and little satisfaction.  The worse than usual pounding away of the tremor persisted while I retrieved my line.  Oh well the water was too weedy anyway.  It was really no surprise since fishing really does not settle my tremors. I do get some mental rest by way of being there.

I also believe  that my inability to get a decent night’s sleep is and has been a factor on days like this and that there is a real sleep deficit that is catching up with me. Sleep deficit equals worse tremors.  Clonazepam is often prescribed for early awakening with Parkinson’s and it was offered on my last neurology visit after I described my difficulty.  I refused it.  Now I am second guessing myself.  At the time I declined knowing that it is a close relative of Valium or diazepam and that it is extremely long acting.  Which means that when you take it at bedtime you then have it both night and day.  I think I have enough drugs hammering away at my brains and one more may just be more than enough.  Sleeping preparations of any variety may be habit forming and generally for that reason are usually not taken continuously.  They are also known to lose their effectiveness if taken daily.  And yet clonazepam is its own substance and I would be glad to hear from any of you who have experience with it.

Rest is certainly considered important in Parkinson’s and for that reason naps are said to a good thing.  Hey, I am only 64 and a nap does not want to fit.  But then again if it helps?

I think I’ll lay down for a while. 

Shaky John

Personal Parkinson's

I was diagnosed with Parkinson's disease two years ago and during those short two years Parkinson's has become a dominant feature of both my physical and mental life.  It threatens to define who I am and ignores that I had previously lived without it for many years.  The disease itself is relentless and it attacks your existence with a slow but steady progression of infirmity.

In my working life I was a pharmacist for more than thirty years and in those years I dispensed many prescriptions for Parkinson's patients and the Parkinson look was very familiar to me.  I would never picture myself with Parkinson's and yet in recent years when I saw myself in the mirror there was something strange about the the way I carried myself.  My proud tall stature and thrown back shoulders had been replaced by a man who did not throw his shoulders back and had a stooped posture.   My wife did not like this and would frequently remind me to stand up and throw my shoulders back.

Being a pharmacist I also knew something about the pathology of the disease and the pharmacology of its treatment. In the 1990's I had evaluated the drug therapy of many Parkinson's patients when I worked as a long term care consultant pharmacist.  In that role I was always looking for drug interactions that might be making things worse for my patients.  A favorite book of mine at the time was Oliver Sacks Awakenings.  An account of early drug treatment with dopamine of a Parkinson's related disorder acquired by way of a flu outbreak in the early 20th century.  I knew about the disease but I was not looking for myself to have it.

Early Spring 2010 I had began to notice a stiffness and a twitching or trembling tremor in my left hand.  These symptoms appeared mostly when I walked rapidly or ran. With time my entire left arm stopped its natural swinging movement when I walked.  Mild stress also activated tremors that looked kind of strange and made people who were close to me uneasy.   At times my hand shook while my thumb and forefinger twitched as if rolling pills.  It did not take long for these bothersome movements to spread from my left hand side to my right hand side. The tremors on my right side have gradually become even worse than those on the left side.

I had concerns and my wife had concerns as well so I made an appointment and sought the help of my doctor. The stress of a doctor visit activated the tremors for him and he was impressed and promptly set me up to see an excellent neurologist, Dr Gierke.  Dr. Gierke evaluated me and at the times the symptoms were vague enough that he could not determine for certain what was going on.  He did say that "you have my permission to say you have a nasty tremor." A year passed watching symptoms that did not provide definitive clinical clarity to accurately call my condition Parkinson's or something else.  Dr. Gierke decided to take things a step further.  He ordered an MRI to rule out lesions or tumors.  It turned up nothing.  He decided that a second opinion might be helpful and sent me to the University of Washington Movement Disorder Clinic.  There I saw a specialist in movement disorders, Dr. Sammi.  A bright, obviously energetic award winning neurologist.  Similar to Dr. Gierke he examined me by watching my responses to a battery of specific neurologic tests.  This included such things as moving my fingers from out stretched arms to end of nose, rapidly opening and closing thumb and forefinger, tapping the floor with my feet, watching me walk and more.  After we finished he adjusted the glasses on his face and then without hesitation went on to explain why he believed that without a doubt I had Parkinson's. As with others who have lived with the medical uncertainty that precedes a Parkinson's diagnosis I was kind of relieved to finally know what I was dealing with.

I already knew that Parkinson's is a progressive, degenerative brain disease caused by the diminishing ability of certain cells deep within the brain to produce a vital ingredient for transmission of nerve impulses: dopamine. In other words it is as if an unidentified microscopic terrorist has invaded the brain's dopamine factory and blew it up. In this case instead of stopping the flow of oil it is the flow of dopamine that has been derailed.  In its absence all hell breaks loose.  Like other Parkinson's patients this process of diminishing dopamine likely started may years prior to any suspicions on my part and explains some issues experienced in my work as a pharmacist and others such as driving, slow response to stimuli and weight loss to name a few. In fact nearly 60-80 per cent of normal dopamine stores are depleted at the time of diagnosis.  The disease is officially incurable at this time.  It progresses slowly and manifests itself differently in every patient who suffers with it. 

It is now two years later and I think I am living pretty well with Parkinson's. My symptoms are well controlled by several drugs that have been prescribed to cover a multitude of annoying but bearable symptoms. Two of the drugs prescribed, work by either stimulating the brain receptors that are lacking dopamine or by adding dopamine that my brain has quit producing.  Their dosages have been slowly moved up over a period of many months and further adjustment will be needed as dopamine depletion and the disease progresses.  For me these two drugs (ropinarol and carbidopa/levodopa) are fir the present working well.  They have helped not only the tremors but also other annoying symptoms such as a diminished ability to perform basic functions like button your shirt buttons.

There is however another nasty catch to Parkinson's.  It has a variety of other symptoms that extend beyond its primary target of movement controlled by the central nervous system.  In my case so far this has meant a couple of toughies: toilet plugging constipation and urine incontinence or oops, the on and off switch for my urinary tract seems broken.  A trip to the urology department at the VA for these problems was very helpful.  They added a laxative and a stool softener that have done a nice job of persuading my bowels to not sleep on the job and for the other tough to mention problem they added two drugs targeted at two separate pieces of the urinary puzzle.  Dicyclomine was added to block the bladder spasms thought to be a part of Parkinson's. Tamsulosin was prescribed to open the urine pathway being narrowed by an aging prostate.  Thankfully these two drugs have dramatically turned around the problems with the urinary system.

So here I sit pecking away at my trusty computer living with Parkinson's and looking forward to a full and productive finish to my life.  Thank God for my wife and partner who will walk by my side in this process.

As for this, I am looking forward to sharing what I learn about this disease with those of you whom I hope will be my readers.  For now on this particular night I am very tired due to a long day and a persistent sleep problem that wakes me most mornings anywhere from midnight to 4:30.  Yes, Parkinson's causes that as well.

Welcome to Parkinson's

Shaky in Coupeville