Thinking back now, I had the first symptoms of Parkinson’s disease (PD) in my mid-thirties. In 2001, I noticed a tremor in my right middle finger. I went to the doctor, and told him that my mother, two aunts and a few cousins had essential tremor. He asked me how they treated it. I replied, “we all pretend not to notice it. To which he responded, “the American Medical Association does not recommend denial as a course of treatment.”

I was prescribed beta blockers, but they had side effects including feeling cold all the time. I stopped taking them and dealt with the minor tremor. Over the next 11 years, I had frozen shoulder four times. Later, I learned that repeated cases of frozen shoulder can be an early sign of Parkinson’s.

In 2015, my right arm was no longer swinging naturally and I developed a limp. My neurologist told me that I had carpal tunnel, causing the issue with my arm and throwing my gait off. My wife did not buy this diagnosis, and neither did my dentist. They both urged me to go back. When my neurologist finally listened to me, she blurted out the diagnosis “Parkinson’s disease.” Seven minutes after the appointment started, it was over. I was alone on the street in New York City with no literature, no referral to a movement disorder specialist and no idea where to turn.

Somehow, I lucked out and got an appointment with Jori Fleischer, MD, a movement disorder specialist at the NYU Movement Disorder Center, a Parkinson’s Foundation Center of Excellence. On July 24, 2015, I was officially diagnosed with Young-Onset Parkinson’s disease. Dr. Fleischer is an amazing person who recommended that I get involved with the Parkinson’s Foundation.

In 2016, I completed my training and became a Parkinson’s Foundation Research Advocate. I was encouraged to get involved in many projects and patient panels. Before I knew it, I was an active member of the Parkinson’s community. I was invited to be on a few episodes of the first season of Parkinson TV, where I met Bas Bloem, MD, and contributed to his article, Multidisciplinary Care for People with Parkinson's Disease: the New Kids on the Block! After that, I contributed the patient perspective to a few other articles and eventually I co-authored What People with Parkinson’s Disease Want with Sonia Mathur, MD.

All along, I was trying to get into a clinical study. At first, my Parkinson’s was not advanced enough to get accepted into any studies. As time went by, I was then told it was too advanced. I took part in one clinical study on the effects of a mild electrical current on Parkinson’s. The treatment had no impact on me, but at the same time, I realized that my involvement in the trial was important. I told myself that by eliminating treatments that did not work, I was helping the Parkinson’s community get one step closer to a cure.

In December 2020, during the COVID-19 pandemic, I realized that my health had gone downhill. After almost six years on carbidopa/levodopa, the medication was no longer working for me. My off periods were getting longer. I suffered from horrible fatigue, and I was dragging my right leg. Various extenders and other medications did nothing to improve my condition. Just getting through the day was an enormous task.

I have always felt that hope was an action, and it was certainly time to act. I searched for and applied to clinical studies. I was not qualified for many of the studies and when I was, no one responded. Finally, one day before I turned 54, I had my first clinical trial appointment! It was a great birthday present and for the first time in a long time, there was hope.

The study is for ABBV-951, an investigational (unapproved) drug containing Levodopa Phosphate/Carbidopa Phosphate (LDP/CDP) given continuously under the skin, via pump for the treatment of Parkinson's. The idea is that receiving medication continuously will reduce off periods and dyskinesias. At first, I felt that I must be getting the placebo. Every time I went to the clinical study site, I made a video. I started feeling much better. Six weeks later, I compared the video taken on the first day of the study to the video taken a month later. The difference was astounding. My dyskinesias were almost gone, my tremor was far less pronounced and even my voice was stronger.

While transdermal infusion will not work for everyone, I predict that this treatment is going to be a game changer. If all goes well, we may see a lot of people with Parkinson’s wearing pumps at the next World Parkinson’s Congress. While I know it is not a cure, I feel strongly that this treatment will greatly improve the quality of life for people with Parkinson’s.

I have two more clinical study visits left in the phase 3, double blind study and then I will begin the open label phase that will last for two years. I am extremely grateful to be one of 150 people worldwide selected for this research study. When it is over, I will certainly apply to other clinical studies.

If you are newly diagnosed, I highly recommend getting involved with the Parkinson’s Foundation. Through my involvement with the Foundation, I became connected to a community of caring and knowledgeable individuals. Your involvement will give you the opportunity to advocate for research, fundraise and contribute to published research articles.

If you are considering taking part in a clinical trial, keep in mind that many studies are looking for people who are newly diagnosed and have not started taking medication. Being part of a clinical trial is not for everyone. It is time consuming, and it may take several months just to get the medication or placebo. I was lucky to have the support of my wife Kate, our son Ocean, family, friends and my colleagues at Queens College, City University of New York.

If you have the time and the desire to help yourself and others, I strongly encourage you to seek out and get involved in clinical studies. Your involvement could change everything about how we study, treat and/or cure Parkinson’s disease!

John Andrejack is a husband, father, educator, volunteer with the Parkinson’s Foundation and a person living and thriving with Parkinson’s disease.

Become a Parkinson’s Foundation Research Advocate

Visit Parkinson.org/GetInvolved for other ways to get involved

Dr. Howe Liu, PT, PhD, MD began his journey with the Parkinson’s Foundation in 2016 when he attended our Physical Therapy Faculty Program. As a professor at the University of North Texas Health Science Center at Fort Worth, Dr. Liu teaches those who will someday work closely with Parkinson’s disease (PD).

“My credentials in medicine (bachelor), Physical Therapy (master), neuroscience (master) and gross anatomy (PhD) have allowed me to integrate Parkinson’s into my Physical Therapy courses over the last 15 years. In neuroanatomy, we discuss Parkinson’s when the basal ganglia lecture is presented. In more case-based evidence-based courses, we use a PD case study to perform literature review, analysis, discussion and presentation. I am a certified LVST therapist, a certified exercise expert for aging adults and received a certificate in interactive metronome course. Such course integrations help PT students in their future clinical practice.”

Upon completion of the Parkinson’s Foundation Physical Therapy Faculty Program, each attendee is tasked with an independent project. Dr. Liu chose to translate the Foundation’s fact sheets to Mandarin-Chinese to advance accessibility in Parkinson’s resources.

“I found that contents in the Parkinson’s Foundation library were all in English. However, some of my Chinese patients living in the Dallas-Fort Worth area couldn’t understand the English materials. I decided to translate the library contents into Chinese,” said Dr. Liu.

“At that time, there were five scholars and medical doctors visiting our department from China. We formed a team and completed the translations which were revised by two additional scholars.”

It is because of the work and dedication by people like Dr. Liu and his team that the Parkinson’s Foundation can create more equitable and accessible resources.

Thank you to Dr. Liu and his team: Dr. Gong, Weijun (Jordan), Beijing Rehabilitation Hospital; Dr. Qiao, Hongfei (Cindy), the 2nd Affiliated Hospital of Xi’an Jiaotong University; Dr. Zhao, Mingming (Abigale), Jiangbin Hospital of Guangxi; Dr. Li, Yingzhi (Nick), Yunnan University of Traditional Chinese University; Dr. Lu, Yujin (Crystal), Shanghai General Hospital; Dr. Li, Ying, Gannan Medical University; and Mr. Zhang, Peng, Tianjin General Hospital of Tianjin Medical University.

The fact sheets that are now available in Mandarin-Chinese are:

帕金森病 vs. 帕金森综合征 (PD vs. Parkinsonism)

作业治疗 (Occupational Therapy)

关于帕金森病 (About PD)

帕金森氏病临终关怀意义 (Hospice)

帕金森病常见问题 (Frequently Asked Questions)

帕金森病的疼痛 (Pain)

帕金森病的睡眠障碍 (Sleep)

帕金森病的营养 (Nutrition)

开车与帕金森病 (Driving)

柏金遜症的10個早期警告徵兆 (10 Early Signs of PD)

泌尿功能障碍与帕金森病 (Urinary Dysfunction)

脑捐赠 (Brain Donation)

膳食补充剂和帕金森病 (Dietary)

运动与帕金森 (Exercise and PD)

My journey to becoming a doctor at the Department of Veterans Affairs (VA) started as a resident in Neurology at UCLA. We worked with the VA in our outpatient clinics and I fell in love with the population of patients. I come from a family full of doctors and medicine is in my blood so the choice of being a doctor was seamless. At the VA I felt I was truly able to make a difference.

I looked forward to those clinics in general neurology and specifically working with people with Parkinson’s disease (PD). We saw county patients and privately insured patients during the other rotations in residency, but the VA was my favorite. There is a tremendous sense of gratification gained from helping people who served our country. I felt and continue to feel honored to touch the lives of some of these heroes in some way and to give back to them and their families.

In 2000, I had the opportunity to continue my work with veterans as a fellow in Movement Disorders when I started the movement disorders clinic at the West Los Angeles VA. In 2015, I took over as Director of the SouthWest PADRECC. PADRECCs are Parkinson’s centers of excellence in the VA, spaced geographically across the country, whose mission is to care for veterans with PD. By joining the PADRECC, I became part of a nationwide group of Parkinson specialists with whom to collaborate throughout the VA.

Teaching residents and fellows about the art of medicine in the VA system has also been tremendously worthwhile. In a world of increasing pressure to be more efficient, to focus on insurance, billing and documentation, the VA affords a space to spend time with the patients and to get to understand the nuances of this complex disease.

We have a multidisciplinary clinic and can share our ideas about how to work together for the patient. A veteran with PD can be seen by a neurologist, a geriatric psychiatrist, a geriatrics fellow, a neuro-pharmacist and a nurse coordinator all in one clinic visit. We can really delve into issues caused by non-motor symptoms such as depression, anxiety and apathy to really improve quality of life for our vets with PD. The trainees get to share in discussions about the complexity of the disease and treating the patient and as a result, several have been inspired to work in the VA system after graduating.

I have been excited to treat PD patients in novel ways. The VA is open to integrative medicine approaches with a program called “Whole Health.” This allows vets access to acupuncture, yoga, Tai Chi, mindfulness, and health-coaching. Recently we have had the pleasure to run a symposium series called “Living well with PD” that draws on the wealth of providers in our community. Representatives from PD yoga teachers, boxing for PD, dance for PD and other groups have taught in this symposium.

We have hosted informational sessions from our pharmacists, physical therapist, swallow therapists and dietitians. These symposia have been a huge success for all involved from the VA providers, the patients and their caregivers and the invited guests from the community. To dance to a song like “Blackbird” by the Beatles with your closest colleagues, our beloved patients and their loved ones and these enthusiastic young therapists, is truly a mind-blowing, heart-warming experience. Many of the invited guests from the community are eager to come back and bring their colleagues, since these experiences have been so powerful.

Having a purpose in life is so central to the wellness of the human condition. I feel lucky to have found my purpose in caring for veterans with PD that really feeds my soul. As increasing numbers of health care providers face issues with burnout and even contemplate leaving the profession, I am heartened to know that my team gets great joy and fulfillment from our work.

Every day I’m in clinic, I laugh a lot and I cry sometimes too but I know that we really do make a difference and truly save lives on a regular basis. It is rare to get such satisfaction as a provider these days and for that I give thanks that I have the privilege to do this work alongside an amazing team and am inspired everyday by my patients and their families.

The VA Parkinson’s Disease Research Education & Clinical Centers (PADRECCs) are Centers of excellence designed to serve Veterans affected by Parkinson’s through state-of-the-art clinical care, research, education and national outreach and advocacy. Learn more at  www.parkinsons.va.gov

The Parkinson’s Foundation honors those who have served and continue to serve our country. If you are a veteran with Parkinson’s or care for one, read our resources: Veterans and Parkinson’s Disease  and Veterans Benefits.