My story begins in the fall of 1992, when I joined the rowing team as a freshman at the University of Buffalo, in Buffalo, New York. I immediately fell in love with the sport, particularly the physical and mental challenge, and being on the water. As a rower, I loved the training, the team atmosphere, and the identity it provided me. I rowed all throughout college and continued to row competitively for several years after college. Recently I’ve been rowing at the Masters level, meaning as an adult with a job and other responsibilities.
Things changed in the fall of 2017. I was doing my normal training and getting ready for a big race, the Head of the Charles, which takes place at the end of October in Boston. Something seemed different this fall. My rowing technique, which I spent years working on, felt wrong. I also felt unusually tired and weak. I shrugged it off and thought I was just getting old or needed to change my training. Unfortunately, the feeling of fatigue didn’t improve and actually got worse. Then, in the spring of 2018 I developed a tremor in my left hand and foot, and my left arm would no longer swing when I walked. After seeing several doctors and having several diagnostic tests, I was diagnosed with young-onset Parkinson’s disease. This was just before my 44th birthday. I didn’t know how to take that diagnosis at first.
One of the first things I thought was that my days as a competitive rower were over. After several months of dwelling on things, I returned to rowing, albeit slower and more awkwardly than I’d like.
During the spring of 2019, I reached out to USRowing, the governing body of rowing, inquiring about being designated as an adaptive or Paralympic rower, thinking it would allow me to compete in local races. I ended up getting invited to the Paralympic training camp in Boston in early June and eventually ended up in a two-person boat that raced at the 2019 World Rowing Championships in Linz, Austria finishing in sixth place.
My main symptoms are a significant tremor in my left hand and left foot, my left arm doesn’t swing while I walk, I have trouble sleeping, and I have anxiety that I never had prior to the onset of the Parkinson’s. To treat the disease, I do a variety of things including taking traditional pharmaceutical drugs, using a hyperbaric chamber, and taking a variety of supplements, as well as other treatments.
Currently, I’m training full-time with the goal to qualify for the Tokyo Paralympics in the summer of 2021. I’m currently training approximately 20 hours a week between rowing, weight training, cycling, and yoga.
My wife and I moved to Canada in 1998 with our two toddlers. It was a stressful relocation, from the tropical breezes of Haiti to the arctic winds of Ottawa. The next year, I noticed a twitch in my left hand and experienced painful leg cramps that woke me at night.
These symptoms started to interfere with my writing and sleep. I had always been the picture of good health — active, athletic, clean eating, and a non-smoker — so I chalked these problems 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. However, as the involuntary movements became more pronounced, I made a doctor’s appointment.
In early 2001, I finally learned the results. It was a gray, bleak February day that often-characterized winter in Ottawa. It was a fitting setting for the doctor’s equally bleak verdict that my twitching left thumb and muscle cramps were likely Multiple Sclerosis. Tests led to this diagnosis of young-onset Parkinson’s disease (YOPD), leaving me shell-shocked.
Sure, I knew of Parkinson’s: it was an old people’s disease, affecting my Great-Aunt Esther whose handwriting got shakier with each passing birthday card. But I was only 44, with a young family — my wife, two sons ages four and five, a promising career and lots to look forward to in life. I asked him to double check he had the right lab report…
Aside from the initial trauma on receiving this news, my wife and I realized we didn’t really know much about this disease. Whether and when to tell others about my diagnosis was a key concern. As a Foreign Service Officer for the U.S. Department of State, I had served in Zaire (now Congo), Japan, Madagascar and Haiti. With 14 years of service completed, and intentions 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 end advancement opportunities. Being the perpetual optimist, I told myself that this couldn’t be the first time that 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. I had access to few State Department resources and PD was a medical disqualification.
I started furtively researching PD on my own. Thankfully, the internet made information more accessible, Ottawa had excellent libraries, and I lived close enough to the U.S. to have access to more resources, such as the Parkinson’s Foundation.
The more I read about PD, and given my lack of family history of PD, 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 was frequently trudging through farmers’ fields, investigating rumored toxic waste areas or visiting developing world factories with few OSHA worker health standards. I recalled that during this time, some of my colleagues became ill from exposure to chemical fumigations. 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.
I decided to treat my PD as a manageable chronic illness. Indeed, I would use PD 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 by 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. I chose to not disclose my diagnosis for several years.
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 remained working for as long as possible. I put myself on a rigorous routine of exercise and diet to maintain my ability to function. This was a daily battle.
I started doing strength and stretching exercises to counteract the muscles and tendons that seem to tighten-up. At the time, my left foot was just beginning to drag a bit, but I could still run. Canada is beautiful place to exercise, bike, hike and ski. I walked as much as possible — at least two miles a day to keep my legs strong and make walking automatic again instead of a conscious process.
After a few years of playing crypto-PD patient, I was relieved when State Department granted me a “class two” medical clearance, which allowed me to continue my career and work in counties with access to good health care. I was posted to Belgium, where my family and I remained for the next four years, but I was plagued 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 re-train 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 to maintain muscle 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 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. For me, this type of diet relieves some of PD’s non-motor symptoms. These years of trying to balance my PD with a hectic work schedule continued, when I took on a final four-year assignment in Tel Aviv, Israel, followed by shorter assignments in Paris and Reykjavik, Iceland.
I worked another 15 years after my initial diagnosis, taking up diplomatic posts in Belgium, Israel, France, and Iceland. Fortunately, I had the Americans with Disabilities Act (ADA) behind me to facilitate “reasonable accommodation” in the workplace, when items such as ergonomic keyboards and better desk chairs were needed. However, these accommodations were not always possible in international environments.
Fortunately, when I opted for early retirement a few years ago at 58, I found the Parkinson’s Foundation was the ideal group to channel my energy. Through its online resources and references I researched PD thoroughly, along with medications and treatments.
I enrolled in clinical studies, trained with the Foundation to become a research advocate, furthering PD research, lobbying Congress to increase funding for training and greater awareness of the growing numbers of people with PD, soon to reach one million Americans. Ultimately, I had the good fortune to join the Foundation’s Parkinson’s Foundation People with Parkinson’s Advisory Council, where I try to guide the agenda we pursue as the PD community.
Although my sons may have never known their father without a limp, or a “shakey” left hand as they used to say, PD has not kept us from traveling and enjoying many experiences and outdoor activities together, just as we did before my diagnosis — albeit with modifications and more planning. It is nearing 18 years since that bleak day in Ottawa, and I still try to maintain the structure and discipline of my work life. I wake up and practice a stretching-yoga routine. I have an agenda of support groups I assist and PD clinical research in which I participate. Of course, there are many medical appointments to keep and exercise remains the core of my PD management program. I have come to a stand-off with the disease: Parkinson’s may in part define what I am — a stubborn 17-year survivor — but it does not define who I am.
We honor the loss of Paul Rohrlich, who has passed away since the publishing of his story. We value his commitment to the Parkinson's community and dedication to PD advocacy.
It’s been nearly two years, but it feels like yesterday when the doctor told me I have Parkinson’s disease (PD). My First worry was what it would mean to my family. Then, of course I was concerned about how it will affect my second great passion golf.
In my 20s, I took a job as the women’s coach at the University of Southern California and played golf on the Ladies Professional Golfer’s Association (LPGA) tour as a minor league pro. I put the game on hold for nearly two decades while my husband and I were raising our three children. Then, in the late 90s, I joined the Futures Golf Tour, competing in more than 36 tournaments over three years.
Gradually, I began to feel something was wrong. My right arm often seemed frozen at my side, my right foot dragged and I tired easily. It felt like I had only half a body. My golf game suffered. I struggled just to sign my name. I hoped it was a pinched nerve, but thought it could be something worse.
My son, Baltimore Orioles Catcher Gregg Zaun, set me up for a battery of tests with his team doctors. In 2003, I was diagnosed with Parkinson’s disease.
I felt helpless. I read everything I could to learn how to live my life in spite of the disease. Armed with information, I set out to fight the battle against Parkinson’s
Today, I’m able to teach and play golf again.* I talk about PD with doctors and other Parkinson’s Patients. Every day, I learn more about this disease is still in it’s impact on the body and spirit.
My disease is still in it’s early stages, so I don’t have any tremors. I’m taking medicine, including a drug called Mirapex ( pramipexole dihydrochloride tablets), one of a class of medications called dopamine agonists. I’m exercising (I find yoga and golf especially helpful) and I welcome the support of my family and friends.
Living with Parkinson’s disease is not all that different from doing great at the round of golf- it takes practice and determination.
My doctor is optimistic that, one day, a cure will be discovered. Meanwhile, my initial fear of the disease is gone and my joy of life has never been stronger. I wish the same for you!
“I keep active so I can keep up with my son,” said Tyaisha Blount-Dillon, a dedicated mom of 8-year-old William-Wallace and wife who is living with Young-Onset Parkinson’s disease. “My husband and I enjoy going to my son’s baseball games. I have a goal that if he is playing baseball in college, I am going to attend without using any assistive devices. I don't allow myself to imagine anything else.”
In the near decade since Tyaisha was diagnosed at age 35, her determination to live a long, healthy life with Parkinson’s disease (PD) has only strengthened. Today, Tyaisha helps and listens to others living with the disease, because she knows just how difficult getting a diagnosis can be. She hopes that her appearance in “Better Lives. Together.” the Parkinson’s Foundation public service announcement (PSA) will spread critically needed awareness to the millions of people who live with or love someone with PD.
“I hope that this video really informs everybody because when I didn't have a diagnosis is when I most used the Parkinson's Foundation,” said Tyaisha. “The website offers so much information, and so many resources, like the Helpline, that are so empowering.”
When Tyaisha was officially diagnosed in 2013, she had already forged a proactive path toward better health. She had spent nearly 10 years searching in vain for the cause of her debilitating symptoms, including extreme fatigue and painful muscle cramps (which she later found out was a form of dystonia common in Young-Onset PD). Her age and gender were not considered typical of PD, and as a Black woman experiencing bias in healthcare, finding proper medical care was that much more challenging.
“I was very athletic, and I still am, so my physique did not look like someone who was ill,” said Tyaisha. “Doctors would tell me that I wasn't sick, but why would I tell them I was having trouble walking if nothing was wrong? Doctors did not believe me, and I could not find any medical support.”
Tyaisha did her best to push through her mounting pain and fatigue. Ultimately, after experiencing a heartbreaking pregnancy loss prior to her pregnancy with William-Wallace, she knew she had to be even more aggressive in finding out what was wrong.
“There was a point in 2010 where I could barely walk. I was lethargic and I didn’t know what was wrong,” said Tyaisha. “My brain was not coming together properly with my body.”
Relying on her research and what she remembered from her physical therapy courses in college, Tyaisha designed an exercise regimen for herself. She hired a personal trainer and set out to eat healthier. “I was walking better and getting stronger,” she said.
She became pregnant again, unwavering in her dream of being a healthy, active and involved mom. “I kind of had to put myself in a position to fight, because I knew this was not the end for me,” she said.
Tyaisha’s pregnancy with William Wallace also created a sense of urgency for her healthcare team to find a diagnosis. She eventually found a doctor she trusted. “He had the patience and the understanding I was looking for in a provider,” said Tyaisha.
After undergoing several neurological tests, Tyaisha’s care team finally arrived at a Parkinson’s diagnosis. With a newly prescribed course of medications, her health continued to improve.
She gave birth to a healthy son, William-Wallace, who follows his mom’s active example. “I demonstrate to him that every day is a new day,” she said. “If I had a bad day yesterday, I forget about it and start over.”
While Tyaisha’s journey with PD has included ups and downs, she has continued to find new ways to adapt. She shifted from a high-stress full time job to self-employment. She underwent deep brain stimulation (DBS) surgery to help control her movement symptoms when her son was just six years old. She continues to stay active every day, whether gardening, working out with her trainer or playing with her son.
"Parkinson’s stretches you — it can force you to do things that you never thought you would be able to do,” said Tyaisha. “You just need to develop ways to fight through it. People may feel that they cannot improve, but I am living proof that you can.”
