My Parkinson’s Story: Managing Medical Challenges in the FS
Optimism and determination saw this FSO through a career he loved after being diagnosed with a debilitating illness.
BY PAUL ROHRLICH
My wife and I moved to Canada in 1998 with our two toddlers. It was a stressful relocation from the tropical breezes and sun of Haiti to the arctic winds of Ottawa. Between the moves in and out of temporary housing, it took quite a while to get settled and get used to our new home.
In late 1999 and early 2000, I began to notice a twitch in my left hand. I also experienced painful leg cramps that woke me at night. These symptoms began to interfere with my writing (I’m left-handed) and my sleep. I had always been the picture of good health—active, athletic, clean eating and a non-smoker—so I wasn’t initially alarmed. I chalked these problems up to the tension and fatigue that accompanied a move to a new position, a new house and new country, all while raising two extremely energetic boys. But as the involuntary movements became more pronounced, I finally raised it with my doctors and, throughout 2000, went through a battery of evaluations and tests.
In early 2001, I finally learned the results. That gray, bleak February day, typical of winter in Ottawa, seemed a fitting setting for the doctor’s equally bleak verdict. My twitching left thumb and muscle cramps were likely multiple sclerosis (MS), he said, and I would need more tests. He had done a CAT scan, X-rays and a variety of other tests to rule out amyotrophic lateral sclerosis (ALS) and brain tumors, but this diagnosis still left me shell-shocked. I couldn’t quite believe it.
Finally, he ruled out MS and declared definitively that I suffered from early-onset Parkinson’s disease (PD). I knew about Parkinson’s: it was an old people’s disease, one that affected my Great-Aunt Esther, whose handwriting got shakier with each passing birthday card. But I was only 44 years old, with a young family (my wife, two sons ages 4 and 5), a promising career that I truly enjoyed and lots to look forward to in life. I asked him to double-check that he had the right lab report.
Some of my old-school colleagues’ comments about others with medical issues prompted me to avoid disclosing my diagnosis for several years.
Aside from the initial trauma on receiving this news, my wife and I realized we didn’t really know much about this disease. And whether and when to tell others about my diagnosis was an immediate concern. As a Foreign Service officer for the U.S. Department of State, I had served in Zaire (now the Democratic Republic of the Congo), Japan, Madagascar and Haiti. With 14 years of service completed, and intending to serve again in hardship posts overseas— required to move up the ladder in the State Department—I knew that having my medical clearance withdrawn would be a kiss of death to Foreign Service advancement. An officer commits to worldwide availability (i.e., implicit good health).
Being the perpetual optimist, I told myself that this couldn’t be the first time that a disability struck the FSO corps, and there must be some way to continue doing the fascinating job that I loved. But I soon found that I was pretty much on my own. The State Department medical department had few resources to offer. Parkinson’s was a medical disqualification that was rarely—if ever—found in the officers State recruited. If it did strike my colleagues, they likely kept it under wraps for career-promotion reasons if they weren’t already retired.
On My Own: Opting for Optimism
I started furtively researching Parkinson’s. Thankfully, the internet made information more accessible, Ottawa had excellent libraries, and I lived close enough to the United States to avail myself of American resources such as the Parkinson’s Foundation and its voluminous website. The more I read about Parkinson's, and given my lack of family history of the disease, the more it appeared that my diagnosis may have been triggered by my Foreign Service work and residence. As an economic and environment reporting officer, I had been frequently trudging through farmers’ fields, investigating rumored toxic waste areas, or visiting developing world factories with few Occupational Safety and Health Administration worker health standards. I had served in severely underdeveloped places like Congo, Madagascar and Haiti. I recall that during this time, some of my colleagues became ill from exposure to chemical fumigations in their government housing.
While in Madagascar, for example, our house was infested with bedbugs and had fleas in the parquet floors. The State Department response was to fumigate the aging mattresses three times in a few short months: probably not advisable for our health, given the products available. Exposure to noxious fertilizers, chemicals and poor environmental conditions are now thought to be elements that may trigger Parkinson’s, particularly if one has a genetic make-up that predisposes one to the disease.
Hanging on to a quote by a 19th-century British essayist that “History is not what happens to a man, but what he does with what happens to him,” I decided to treat my disease as a manageable chronic illness, not unlike diabetes, which affects many persons, regardless of profession or age. Indeed, I would use Parkinson’s to prove the point that the United States should be represented overseas not just by people of many different ethnicities and races, but by persons with great capabilities beyond their disabilities, limps and even shakes! America’s diverse society should be its trademark abroad, representing its strength through its diversity. New medications and treatments were coming on stream that made living with PD possible, a better option than just succumbing to physical decline.
At times my optimism was met with a stark realism in the competitive world of diplomacy, however. Some disabilities were clearly more acceptable than others, and I soon discovered that some of my old-school colleagues were less than supportive; their comments about others with medical issues prompted me to avoid disclosing my diagnosis for several years. Some of them made clear they would step over colleagues in their pursuit of promotion up the ladder.
Managing the Illness
At the same time, my wife and I planned for the future. We needed to transition her back into the workforce to eventually take over support of the family while I continued to work for as long as possible. I put myself on a rigorous routine of exercise and diet to maintain my ability to function in “able-bodied” society. This was a daily battle. I started doing strength and stretching exercises when getting up each morning to counteract the muscles and tendons that seem to tighten up overnight. At the time, my left foot was just beginning to drag a bit, but I could still run and ski, and Canada was a beautiful place to get out and exercise! I walked as much as I could—at least a mile every morning and a mile in the late afternoon or evening—to keep my legs strong and make walking automatic again instead of a conscious process.
Fortunately, I had the Americans with Disabilities Act behind me to facilitate “reasonable accommodation” in the workplace.
After a few years of playing crypto-PD patient, I was relieved when State Department medical officials were accommodating and granted me a Class 2 medical clearance, which allowed me to continue my career and still left available to me many developed and developing countries with access to good health care. I was posted to Belgium, where my family and I remained for the next four years. I was plagued on and off by terrible reactions to the European-sourced PD medications, which left me alternately nauseated or drowsy.
My problems with mobility and balance became more pronounced, and I had to work harder to maintain and retrain my legs each morning to avoid the tyranny of small steps that PD imposes. Despite their charms, quaint European cobblestone streets and older mass transit systems were not disability-friendly. I routinely went to the gym—at least three times a week—to maintain strength and balance. I believe that exercise and weight training remain the most essential self-help one can practice, in addition to diet.
A devout coffee drinker, I gave up caffeine to reduce its effect on my tremors and minimize any interference with sleep. I also limited my intake of refined sugar and sodium, which was pretty challenging in the pastry-rich environment of Belgium and France. Although my wife and I had always been mindful about maintaining a healthy family diet, a lower protein regime eating less red meat and more fruits and vegetables proved necessary and helpful. There is no doubt that this type of diet relieves some of PD’s nonmotor symptoms. These years of trying to balance my Parkinson’s with a hectic work schedule continued when I took on a final four-year assignment in Tel Aviv, followed by shorter assignments in Paris and Reykjavík.
In all, I was able to continue working for another 15 years after my initial diagnosis, taking up diplomatic responsibilities in some of our most active posts. Fortunately, I had the Americans with Disabilities Act behind me to facilitate “reasonable accommodation” in the workplace, when I needed items such as ergonomic keyboards and better desk chairs. Desks that permit standing and good chairs when sitting are essential for people with Parkinson’s. For persons working in the U.S. public and private sectors, the ADA provides support and protection to those who continue to operate in the mainstream workplace. However, working in international environments has distinct challenges in that management does not always ensure reasonable accommodations.
A Stubborn Survivor
Fortunately, when I opted for early retirement a few years ago at 58, I found the Parkinson’s Foundation was the ideal group through which to channel my energies and practice my economic and science officer skills. Through its online resources and references I researched PD and the drugs and treatments for it thoroughly. I enrolled in a number of clinical studies, trained with the foundation to become a patient advocate and became an activist for furthering PD research, lobbying Congress to increase funding for training and boosting awareness of the growing numbers of patients, soon to reach one million Americans. Ultimately, I had the good fortune to join the foundation’s People with Parkinson’s Advisory Council, where we try to guide the agenda we pursue as the voice of the PD patient and caretaker community.
Despite having achieved a small personal success, I often think about how the department manages employees with longterm medical challenges—or fails to do so.
Although my sons may have never known their father without a limp or a “shaky” left hand, as they used to say, PD has not kept us from traveling and enjoying many experiences and outdoor activities together as a family, just as we did before my diagnosis— albeit with some modifications and more preplanning. It has been 18 years since that bleak day in Ottawa, and I still try to maintain the structure and discipline of my working life. I wake up and practice a stretching-cum-yoga routine every morning. I have an agenda of support groups I assist and PD clinical research in which I participate.
Of course, there are also many medical appointments to keep. And exercise remains the foundation of my PD management program. I have come to a standoff with the disease: Parkinson’s may in part define what I am—a stubborn 18-year survivor—but it does not define who I am.
Issues for State
Despite having achieved a small personal success, I often think about how the department manages employees with long-term medical challenges—or fails to do so. With the aging population of the United States, more people are working years longer to save for retirement. The incidence of chronic illnesses such as heart disease, diabetes, lupus, Parkinson’s, MS and others is increasing, particularly as the workforce ages.
In time, State may find it has some responsibility to FSOs whose occupational duties exposed them to environmental toxins and hazardous conditions, just as the Department of Defense now acknowledges the role that the chemical defoliant Agent Orange may play in its retirees’ Parkinson’s diagnoses.
Beyond duties to the individual, the issue of whether physically challenged Americans should be recruited and accepted as FSOs remains. If we have confidence that America’s ethnic and racial diversity represents us boldly abroad, why should persons with handicaps, limited mobility or those managing medical challenges be driven from the Service?
Clearly, outstanding professional competence must be the paramount consideration; but to ignore the capabilities of those who want to serve and have the capacity to contribute is unfair to the candidate and shortchanges the department. State’s laudable efforts at diversity in the Civil Service workplace have yet to be realized on the Foreign Service side.