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.