New Survey Highlights Telehealth as Long-term Alternative To In-Person Visits
When the COVID-19 pandemic began in 2019, alternatives to in-person doctor visits became necessary. Many in-person visits were moved to telehealth. In fact, a previous Parkinson’s Foundation survey found that telehealth use increased from 10% prior to the pandemic to 64% during the pandemic among people with Parkinson’s disease (PD). However, little is known about the attitudes of people towards telehealth.
To better understand the attitudes of people living with PD on telehealth use and satisfaction, the Parkinson’s Foundation and Columbia University Parkinson’s Disease Center of Excellence administered a survey. The survey was titled: Attitudes towards telehealth services among people living with Parkinson’s disease: a survey study.
This survey is important as it helps to understand the use of telehealth and quality among the PD community.
Survey Results
The survey was sent to 16,026 email addresses from the Parkinson’s Foundation and Columbia University Parkinson’s Disease Center of Excellence mailing lists. There were 944 complete survey respondents.
The average age for respondents was 71.5 years old, and the average time they have lived with Parkinson’s is seven years.
Experiences with Using Telehealth
Of the 944 completed survey responses:
90% of participants were aware of telehealth
83% used it at least once
In the last 12 months, respondents reported using in-person visits most frequently
Experiences with Telehealth Satisfaction
Overall, people with PD were equally satisfied with most services via telehealth in comparison to in-person visits. Of those who had a positive telehealth experience:
The highest telehealth satisfaction was for speech and language pathology appointments (79%) and mental health appointments (70%)
The biggest reasons for telehealth satisfaction: reduced travel time (46%), ease and convenience (22%), and the option for follow-up appointments (19%)
The top reasons people preferred in-person visits include:
Health care professionals could notice symptom changes better in-person
Appointments were more thorough (20%)
Important of sight and touch in a physical examination (20%)
“It is difficult for my doctor to really see my gait, movement responses etc. when I am not there in person,” one survey participant said.
Experiences with Telehealth Quality
The quality between telehealth and in-person visits was similar. It seems that visits that require a physical exam were more preferrable to be in-person. However, people with PD expressed that telehealth saved time, reduced travel, was convenient, and a good option for follow-up appointments. Overall, people with PD saw telehealth video visits to offer the same quality of care as in-person visits.
Key Takeaways
Telehealth satisfaction and use is perceived be a good alternative to in-person visits among people living with PD.
Telehealth may help alleviate patient burden, especially by reducing travel with decreased mobility.
While most type of provider visits were equally satisfactory in-person vs over telehealth, speech language and pathology and mental health visits were preferred via telehealth.
Among the participants, appointments that required physical examinations were preferred to be in-person.
Telehealth should remain an option in the future.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about telehealth and PD with the below Parkinson’s Foundation resources:
Reference
Feeney, M. P. et al. The impact of COVID-19 and social distancing on people with Parkinson’s disease: a survey study. NPJ Park. Dis. 7, 10 (2021).
How a Doctor is Removing Barriers Between Clinical Care and Research
William Dauer, MD, has had an impressive and impactful career in neuroscience. His groundbreaking research has focused on the molecular basis of dystonia (disabling, involuntary movements) and the mechanisms of neurodegeneration (lost brain cells) in Parkinson’s disease (PD).
We spoke with Dr. Dauer, who is also the inaugural Director of the Peter O’Donnell Jr. Brain Institute and Professor of Neurology and Neuroscience at the University of Texas Southwestern Medical Center, about his work, the early encouragement of the Parkinson’s Foundation funding, and his broader interests in breaking down silos between clinical care and research.
You began your career as a neurology resident and fellow in movement disorders at Columbia University more than two decades ago. How did the support from the Parkinson’s Foundation impact your early career?
It's exciting when you're just starting out to get funding. It's validating, important and so critical… those early career awards really can make a huge difference. The Parkinson's Foundation was a dominant force in enabling what my research would be, it would have been inconceivable without that support.
The Foundation funded an ecosystem of people: Bob Burke, Dave Sulzer, Serge Przedborski, Leo Stefanis. To us, as young investigators, knowing that there was some degree of support year after year and that people believed in you, it just made a world of difference. It made a lot of things possible and allowed me to do things I otherwise would not have done.
Many things in science don't work! That's part of becoming a scientist and for people who want to find the answer, that's their drive. Getting early career funding from the Foundation provides a degree of predictability and allows you to explore those ideas that are burning questions — which may be out-of-the-box thinking that wouldn’t necessarily be funded by the National Institutes of Health (NIH). It led to different things that we discovered that I think otherwise would not have been possible.
How did the Parkinson’s Foundation research grant help shape your investigations?
The Foundation was important in bolstering a basic scientific interest in PD research — it was important that they made that path possible. When I first received funding, it was the very beginning of what I would call the genetic discovery era for Parkinson's. Alpha synuclein was discovered as I was doing my fellowship: synuclein was really the first Parkinson-causing gene discovered.
The work we were able to pursue with Parkinson’s Foundation support enabled us to explore whether there was a relationship between that gene and the neurodegeneration caused by the Parkinson-related neurotoxin MPTP. These studies allowed us to discover that there is a relationship between environmental-type toxins and genetics, and that understanding provided a focus for future work. The Parkinson’s Foundation funding provided a set of questions that could be used to help guide research on synuclein itself.
All of that made a difference for me doing that work. There's a good chance I wouldn't have done that work had it not been for the early support of the Parkinson's Foundation. The Foundation support allowed me to pursue this work in an internationally recognized laboratory expert in the most cutting edge mouse genetic technologies needed to pursue these questions.
The grant fostered high quality work and the development of new science and young scientists, as I was at the time and increasing the degree of rigor and what's expected to advance the field. These things are related in ways that are hard to know. Encouraging scientists that do solid work, outstanding, rigorous work that engages and elevates the conversation, has impacts that are diffuse.
One of the most groundbreaking aspects of your career was learning about the causes of dystonia. Can you tell us about this?
Dystonia is an important symptom in Parkinson's, and it can be very disabling. It can, in some cases, be the cause for surgery and deep brain stimulation. My initial passion was dystonia for a variety of reasons, and it has been an enduring passion. The Foundation and the environment at Columbia very much contributed to this interest and, of course, also my clinical care.
The work that the Foundation initially funded was on a form of dystonia discovered at Columbia, together with researchers at Harvard, called DYT1 dystonia [a form of early onset dystonia]. The identification of a genetic form of “pure” dystonia allowed us to be able to look at this piece of the puzzle in isolation. The idea was if we can understand the mechanisms of what causes dystonia — that piece gives us a clearer picture of one of the pieces of the Parkinson disease puzzle.
What's become interesting is that by pursuing the DYT1 research we've developed evidence that dystonia is caused by abnormal functioning, and perhaps even some degree of degeneration, of a particular class of cells in the striatum [area of the brain]. The influence of that work contributed to a focus on these cells in a range of abnormal involuntary movements, including in dyskinesia and dystonia in Parkinson's. A lot of this was developed with that original funding. It's inspired others and influenced other Parkinson’s Foundation-funded investigators.
“Science and medicine are not separate, they are intertwined and nurturing that relationship, as the Parkinson’s Foundation is doing, is critical for the breakthroughs to which we all aspire.”
- William Dauer, MD.
What is next for you in terms of Parkinson’s research and care?
People with Parkinson’s face a series of unique challenges. My move to UT Southwestern to direct the O’Donnell Brain Institute is an incredible opportunity to take all the scientific and clinical knowledge and experience I was so fortunate to get through places like Columbia and Michigan. I will try to bring the lessons I've learned to bear on a larger scale to tackle these diseases.
I've had this parallel career: I've always seen patients and have had this passion for rigorous research that is informed by my understanding of the illness, and also the quality of care for those with neurodegenerative disease. Creating high-level clinical care connects to the research.
When you have engaged healthcare for patients, when you're doing the right thing, they come back because you're taking care of them and educating their families. That leads them to become advocates for research, and in some cases to participate directly in patient-centered research. Science and medicine are not separate, they are intertwined and nurturing that relationship, as the Parkinson’s Foundation is doing, is critical for the breakthroughs to which we all aspire.
Most people think of Parkinson’s disease (PD) as solely a movement disorders that starts with a hand tremor and progresses over time. In fact, Parkinson’s is a disease that brings with it movement and non-movement symptoms. Specific symptoms experienced, their severity and the rate of progression — along with how they respond to medication — can vary significantly from person to person living with Parkinson’s.
Scientists have identified more than 90 gene variants (changes in a gene) that are associated with Parkinson’s. PD, if inherited, can be:
Autosomal dominant gene variants: a dominant version of a gene that shows its specific trait even if only one parent passed the gene to the child. These PD-related gene variants include SNCA, LRRK2 and VPS35.
Autosomal recessive gene variants: shows its specific trait when both parents pass the gene to the child. These PD-related gene variants include PRKN, PINK1 and PARK7 (DJ1).
10-15%
of all Parkinson's is caused by genetics.
Variants in the GBA gene, the most common Parkinson’s-related gene, are believed to be a major risk factor for PD whether inherited from one or both parents. Understanding the genetic differences across people with PD could help uncover important clues as to how and why each person's experience with PD differs.
However, testing all possible PD-associated genes is expensive, and rarely covered by insurance. Plus, there are no PD-specific guidelines available to help physicians and genetic counselors choose which genes to investigate. How then, does one determine which genes should be tested?
About the Study
The ClinGen Parkinson's Disease Gene Curation Expert Panel (GCEP), formed in 2020, sought to provide clarity in the world of PD genetic testing, working to establish genetics testing guidelines. They published their findings in the journal Parkinsonism and Related Disorders titled, "The commercial genetic testing landscape for Parkinson's disease" (Cook et al., 2021).
GCEP is an international multidisciplinary expert group that aims to establish the important roles specific PD genes play in disease development. Member expertise spans from key fields such as genetics, medical, academia and industry — and include Jim Beck, PhD, Parkinson’s Foundation Chief Scientific Officer and Anna Naito, PhD, Parkinson’s Foundation Associate Vice President of Research Programs who oversees the Foundation’s genetics study.
Genetic test: a test that looks for one mutation in one gene at a time.
Panel test: a test that looks for mutations in multiple genes.
Study authors reached out to the National Institutes of Health (NIH) Genetic Testing Registry (GTR) to identify currently available PD genetic tests offered by clinical laboratories. They included only the gold standard of labs — those that are Clinical Laboratory Improvement Amendments (CLIA)-certified. Additionally, those CLIA-certified laboratories had to offer a multi-gene, diagnostic panel for PD.
Cook and her colleagues identified a stunning 502 unique clinical PD genetic tests offered by 28 CLIA-approved laboratories. However, only 11 laboratories also met the selection criteria of providing the same information on their websites as in the NIH Genetic Testing Registry. Of the 11 laboratories, seven are in the U.S. and four are in Europe.
Results
All 11 laboratories offered a general, diagnostic, multi-gene panels for PD that included three or more genes.
All panels included in analysis, looked for five genes consistently linked to PD: SNCA, PRKN, PINK1, PARK7 and LRRK2.
All PD panels — except one — included genes linked with juvenile or atypical parkinsonism, genes linked with diseases in the differential diagnosis (a process of testing all possible conditions or diseases that could be causing symptoms) of PD (i.e. Wilson’s disease or dystonia).
None of the 11 analyzed panels were designated for a particular geographic or ancestral population.
GBA, a gene carrying significant risk for PD, was not consistently offered.
VPS35, a more recently discovered PD-related gene, was not consistently offered.
Less well-established genes (according to published literature) were often included, such as: DNAJC13, TMEM230, GIGYF2, HTRA2, RIC3, EIF4G1, UCHL1 and CHCHD2.
General diagnostic PD panels differed significantly in size, ranging from five to 62 genes.
Three laboratories did not explicitly offer additional analysis of copy number variation (change in the number of copies of an individual gene) for genes such as PRKN or SNCA, known for having deletions and duplications.
There were significant differences in the diagnostic panels offered by U.S. and European laboratories.
European laboratories tended to offer larger gene panels.
Testing methods were often neither consistent nor standardized.
What does this mean?
Genetics can be a powerful tool used to help us better understand what is responsible for slowing or stopping the progression of Parkinson's. Genetic testing could lead to the development of better research strategies, improved care and accelerate the development of PD treatments, regardless of whether the PD was inherited or not.
However, the current state of PD genetic testing is far from ideal. There is a lack of standardized genetic tests for PD, making it difficult to compare different test results and interpret the findings to accelerate research and improve care.
Additionally, there is a lack of guidance provided that takes into consideration family history of PD, age of onset, current symptoms or even ethnicity. Why does this matter? For example, let’s take ethnicity: having a GBA gene mutation has been identified in upwards of 12% of people with PD from European descent and 15-20% of Ashkenazi Jewish people with PD. People with a GBA mutation tend to experience PD motor symptoms sooner, decline more rapid cognitively, and have particular difficulty with walking and balance. This would be important information for everyone to know in advance — from the person with PD, to their doctor and care team.
Physicians select genetic PD panel tests because of their perceived efficiency, completeness and cost-effectiveness. However, most physicians have little or no in-depth knowledge of PD genetics. Thus, as urgently recommended in this study, we need clear guidelines developed by experts in the field of PD genetics. These guidelines must be a living document, that continually provides updates and insights to new genetic findings.
Establishing clear PD genetic guidelines can: help doctors and healthcare professionals provide more efficient care, genetic counselors provide better guidance based on current data, and equip researchers with the information they need to develop better ways to detect and treat Parkinson’s.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about genetics and PD through the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to your Parkinson’s questions.
If Parkinson's runs in your family and you want to get genetically tested, consult with a genetic counselor. Genetic testing helps estimate the risk of developing Parkinson's, but it is not a diagnosis and cannot provide your probability for developing the disease.
Cook, L., Schulze, J., Verbrugge, J., Beck, J. C., Marder, K. S., Saunders-Pullman, R., . . . Movement Society Disorder Task Force on Recommendations for Clinical Genetic Testing in Parkinson's Disease, A. (2021). The commercial genetic testing landscape for Parkinson's disease. Parkinsonism Relat Disord, 92, 107-111. doi:10.1016/j.parkreldis.2021.10.001
Lunati, A., Lesage, S., & Brice, A. (2018). The genetic landscape of Parkinson's disease. Rev Neurol (Paris), 174(9), 628-643. doi:10.1016/j.neurol.2018.08.004
Marras, C., Canning, C. G., & Goldman, S. M. (2019). Environment, lifestyle, and Parkinson's disease: Implications for prevention in the next decade. Mov Disord, 34(6), 801-811. doi:10.1002/mds.27720
My dad, John Morton, was a college athlete and maintained a very active lifestyle. He was a swimmer, golfer, runner, biker in addition to a very successful lawyer. He loved continuing education and after his Parkinson’s disease (PD) diagnosis, devoted endless hours to researching and learning about different treatments, studies and activities related to Parkinson’s. He even attended the 2018 Parkinson’s Policy Forum in Washington D.C. in an effort to learn more about PD and share his story.
His PD diagnosis came in 2008 after a wrist injury in a bike accident while training for a full marathon. The tremors began and so did his progression. After several years he underwent Deep Brain Stimulation (DBS) surgery. While the surgery initially slowed his progression, the disease began to take control and more symptoms began occurring including gate issues and many falls. Unfortunately, he passed away after a fall last spring as a result of Parkinson’s.
In the last few months for my dad, I was able to experience his progression firsthand as my parents moved to Texas to be closer to family (including myself). As his wife and main caregiver, my mom played an integral part in my dad’s health and helping him get the right treatments and help he needed. As a result, he was able to maintain an active lifestyle as best he could ― continuing to swim when he could and play golf as much as possible.
Throughout the 11 years he lived with Parkinson’s, my dad never let PD define who he was. He was incredibly smart and motivated me and my sisters to always strive for the best. His inquisitive nature and motivating personality moved me to continue learning about Parkinson’s and contribute where I could to the ongoing research and development, including hosting a small, local “Pedal for a Purpose” event to raise money for the Parkinson’s Foundation in 2017.
This disease is not easy for anyone involved ― the person living with it, family members or caregivers ― and my dad’s passing really put that into perspective. There is so much additional research and information we need to find a cure for this terrible disease and I hope that this can be done sooner rather than later.
Raise Parkinson's awareness on Instagram with social media GIFs that Natalie donated to our digital PD community.
My husband, Rick, and I are high school sweethearts, we met at 13 and started dating by 17. Twelve years ago we started planning our retirement and I noticed Rick was exhibiting some motor problems.
Since I was a physical therapist (PT), I suspected Parkinson's disease (PD). When the doctors confirmed the PD diagnosis, it was not really a shock... it was more of a disbelief. As we get older, we think about some health issues we might have to endure, but Parkinson's was not even at the bottom of the list ― it wasn’t even ON our list.
We had envisioned our retirement years sitting on the beach, traveling, enjoying our grandchildren. It is not EXACTLY like that. While yes, we sit on the beach, we have a newfound purpose now. We made a promise to each other to not let Parkinson's be our life.
We learned to live with it. I put my PT cap back on and we started to work together. We went back to the basics since Rick’s body and brain were not in sync. He could not understand why he was bumping into doors and tripping. For months we worked on these issues. All throughout I would educate myself on the disease and was truly amazed and excited with the ongoing research and development.
Our physical therapy made a huge difference. He no longer bumped into corners or tripped. Our frustrations and fears eased up because of our newfound understanding. We were learning to cope. We signed up for clinical trials, expert briefing webinars, and began seeing a movement disorder specialist. The Parkinson's Foundation became our new friend.
We continued to live our lives as if PD were not there. Rick became involved with our club. He has never shied away from being visible, even when his symptoms were also visible. We began mentoring families new to PD, helping each other cope.
And on a fateful day, we met with the Parkinson's Foundation CEO. We discussed Foundation programs and I talked about my frustration as a physical therapist and a care partner. There needed to be more training for physical therapists since we experienced firsthand how the right therapy program and therapist made a difference. The CEO said that they were working to launch a physical therapy program. I was intrigued! Rick and I wanted to help get this program moving.
Our engagement with the Parkinson’s Foundation really took off. We have never met a more engaged and focused group of people working together to improve the lives of the Parkinson's community and strive towards a cure. Rick and I are so thrilled and honored to be partnering with them in many of their projects.
In 2017 we went to New Orleans to meet some of the PT faculty and students and we were delighted to see their excitement and newfound PD awareness. We discussed the importance of the physical therapist really knowing how to treat and help their patients.
The Parkinson’s Foundation kept their promise and launched the Physical Therapy Faculty Program. Designed to improve physical therapy care in Parkinson’s, this program trains faculty leaders who go on to educate physical therapy students. Rick and I are so proud to be part of this and partnering with the Foundation.
There is no time to waste, receiving the best care is critical. We are now working with the Foundation to launch an online physical therapy certification program by end of year. This will allow existing PT’s to receive a Parkinson’s certification. When people with PD need to see a physical therapist, they can soon find one that has completed Parkinson’s training or a certification.
Onward with our journey, the Parkinson Foundation connected us with a couple in our area. We agreed that we needed more resources in Palm Beach County, FL. So, we hosted a symposium with the help of the Parkinson's Foundation. Afterwards people asked me how they can get involved. Soon after, the Foundation brought new educational programs to our area ― we were thrilled.
Hosting an event inspired me to start a local support group, “Knowledge Is Power.” We now host ping-pong for Parkinson's and boxing. We are also heavily involved with Moving Day, where I’m Team Captain and am excited to present.
In 2019, Rick and I, along with the Parkinson’s Foundation went to Capitol Hill to lobby Congress during a discussion on PD medications ― cost, availability and lack of insurance coverage. The Parkinson Foundation is our advocate. We need to keep our voices loud and clear.
This is the journey we are on. We have learned to put Parkinson's into a closet and close the door… even though it constantly shows its face. We are fulfilling a promise to each other, Parkinson's does NOT dictate our life! Life will get harder, but we will work harder. We will never give up on HOPE.
New research and discoveries are constantly happening, we are on a fast pace moving forward to find a cure. We all hold the answers. We must do our part to support the critical work of Parkinson’s Foundation and researchers. They need our help. Follow your passion, ideas, thoughts ― they are important to our goal! Are we making a difference in the Parkinson's community? Absolutely!
For Rick and me, getting involved gives us some control and empowerment over this disease. Our journey has evolved, but we will not allow this disease to lead us. We will beat Parkinson’s!
Shelley Friedland is a passionate Parkinson’s Foundation advocate and volunteer. She is a member of the Foundation’s Leaders in Research program, is the President of the Florida Advisory Board, an advocate for the PD GENEration initiative and is involved in the 2020 and 2021 Care Partner Summit.
“Moving Day for me is an opportunity to contribute to the cause of finding a cure for Parkinson’s disease (PD) and to help support and educate the Parkinson’s community and the larger communities we live in,” William Krechowski said.
When William was first diagnosed with Parkinson’s, he did not know the life-changing affects this disease has on one million Americans each year and the affects it would soon have on him. He turned to the Parkinson’s Foundation to educate himself on this disease that was new to him, now that it entered his life. William gives great thanks to the Foundation, which has provided him so much insight during a difficult time.
Kelly, a physician assistant at the University of South Florida Parkinson's Disease and Movement Disorders Center, a Parkinson's Foundation Center of Excellence, encouraged William and his family to get involved in Moving Day Tampa Bay as a way to help bring awareness to Parkinson’s. William was also excited to raise money for Parkinson’s research that leads to better treatments and ultimately, a cure for the Parkinson’s community.
William admits that he did not have much experience in events like this, but because the cause meant so much to him, he soon made Moving Day his passion project. With friends and family by his side supporting him in every possible way, he created his team "Bill’s Best Adventures."
“I am walking for myself and for a cure for Parkinson's,” said William.
"Bill’s Best Adventures" is the moniker William used to describe the annual adventure trips he's taken since 2001. "Participants on these trips have numbered from three to seven per trip and have been cousins, Air Force buddies, high school and college friends," William said. From hiking Machu Picchu to river rafting the Colorado River to sailing the San Francisco Bay, William does not let Parkinson’s get in the way of his adventures. William lives every day to the fullest and continues to plan exciting trips each year. Next on his list: The Great Smokey Mountains.
Although William’s adventures are incredible, he still faces the symptoms of Parkinson’s daily ― fatigue being most prevalent. He has learned that exercise is crucial in lessening the symptoms of Parkinson’s and has fully integrated daily in his life. From going to the gym two to three times a week to boxing at Rock Steady Boxing to hiking worldly known trails, “I think I’m doing pretty well for being 72 and living with Parkinson’s,” William said.
It was just past midnight on March 14, 1996. I began the day strapped into the crew compartment of a space shuttle headed for orbit. I was minutes away from the launch of shuttle mission STS-76, and I could hear the voice of launch control counting off the seconds until finally I heard, “3, 2, 1 and liftoff of the shuttle Atlantis on a mission to the Russian MIR space station.” That pre-dawn launch was my third space shuttle mission as a United States Astronaut. It was, however, my first mission to space after being diagnosed with early Parkinson disease (PD).
It seems improbable if not impossible: an astronaut with PD had not only been certified for space flight, but had also been certified to perform a planned space walk on the MIR space station. That morning, as I began the ascent into orbit to rendezvous with the MIR, I thought about my own personal journey leading up to that moment. It was as hard as any I’d ever faced, but one that I had never given up on. A journey that had begun almost two years earlier.
My second mission had been STS-59 in April 1994 and it was very successful. I felt completely fit during and after the flight. About six months later I went in for my annual flight physical. Everything, including my standard neurological exam, was satisfactory. Just as a favor, I asked the flight surgeon after the exam if I could have an orthopedic surgeon look at my right shoulder. (I played competitive racquetball and thought I might have recently injured it during a game). He asked me where it hurt and I told him it didn’t hurt at all. Rather, my right arm just seemed to hang without moving when I walked. I could tell I must have touched a nerve (no pun intended) because he immediately called for the Chief Flight Surgeon. The Chief asked me to walk with him down the hall. Little did I know how that walk would change my life. The next thing I knew, the Chief informed me that he was taking me into Houston the next day to see an expert at the Medical Center. I was surprised at the sudden and ominous turn of events, as I had assumed my visit would have yielded a quick fix and allowed me to resume my competitive racquetball. That’s when the Chief informed me I was going to see a neurologist, a man by the name of Doctor Joseph Jankovic. I assumed this was part of the normal sequence to get my arm fixed.
I was surprised by the urgency of the visit, and more than a little confused when, after taking a careful history and examining me, Dr. Jankovic informed me that I had PD. I had never heard of this disease and as someone who considered himself to be in excellent physical condition, I naturally assumed it was something I could conquer. In fact, my response was something like, “OK, fix it so I can get back to my racquetball!” Then, reality hit me. Hard! The doctors explained I had several tests ahead of me. PD was a clinical diagnosis and confirmed only by eliminating — through tests — all other neurological disorders. Needless to say, racquetball was no longer on my list of priorities.
The test results came back negative. The doctors were right: I had PD. But my only symptom was that my right arm didn’t move when I walked. It seemed impossible. I didn’t want to believe it, and for a while I refused to believe it.
So many things went through my head when I began to learn more about my condition, but I was resolute and determined not to let it affect my outlook. The medical community respected my privacy and only those senior NASA managers with a need to know were informed. They asked me what I wanted to do, and my response was quick: I wanted to remain on flight status and remain in the cue for a future space flight. I wanted to remain an astronaut.
According to researchers, PD is a progressive degenerative disease that occurs over time. That meant it was very likely that I had PD prior to my first shuttle flight STS-53 in December 1992. I saw no limitations to what I could do just because I had PD, and I used all of the available research to build a case for why I should continue to fly. Thankfully the NASA flight surgeons, senior NASA management, and my family supported me, and I was granted return-to-flight status under the condition that I would be watched closely by the flight surgeons. I also knew that I could not disclose my condition publicly.
Keeping this secret between myself and those closest to me, I was subsequently assigned to STS-76. I was to be a member of the crew, but was told I would not be assigned to perform the planned space walk (extra-vehicular activity, or EVA, in NASA speak). I, along with another astronaut named to the STS-76 crew, had performed the majority of the development testing of hardware and operational procedures for the experiment packages to be deployed during the planned space walk. In other words, knowing as much as we did about the subject, our expectations were that we would be assigned to perform the EVA. I informed management that I wanted to do the EVA and that I didn’t know there were limitations imposed on my capabilities. I think they were actually surprised by my desire to perform the space walk, despite my condition.
Before long, they reassigned me the EVA. The mission was highly successful, including the six-hour long EVA during which my crewmate and I attached four MIR Environmental Effects Payload experiments to the station’s docking module to better understand the environment around MIR over an 18-month period.
Looking back, I recognize the difficult decision NASA senior management made in assigning me to STS-76. I am thankful to have had the full support of the Flight Surgeons, Dr. Joe Jankovic, and Johnson Space Center management. They presented my capabilities to the NASA Headquarters Space Flight Medical Review board and I know it was not an easy decision for the board and senior management to clear me for flight. I am grateful for their support in realizing the risk they took with me when there were dozens of other qualified astronauts who could have performed this mission. It is a testimony to their certification processes that they were assured I could perform the mission.
And although no one ever restricted me from going public with my PD, I knew it was best to remain quiet at the time. Too many questions of the managers and medical review board by an inquiring press would have proven to be embarrassing for all of us. I could imagine the focus of the typical question, “How could you let someone with Parkinson disease fly in space?” I am forever appreciative for the opportunity these people afforded me. They took the high road instead of making the easy decision, which would have been to ground me permanently.
With this article I have now gone public. Following my third and final space shuttle mission, I left NASA in January 1997 and joined the Boeing Company as Space Station Flight Operations Manager. In 2007 I became the Deputy Program Manager of Boeing’s Space Shuttle Program, a position to which I am committed until the Space Shuttle fleet’s retirement in 2011. In writing this article, I hope to inspire others with PD by showing them that Parkinson is not the end of your life. I believe that mental limitations are defined by what you make of your situation. In the famous words of former NASA Flight Director Gene Kranz, “Failure is not an option.” I am continually reminded of this by my best support group: my wife Nancy and my sons Richard and Brandon. Without their encouragement I probably would have followed a different path.
It has been 17 years since I received my initial diagnosis. I left the Astronaut ranks in 1997 for reasons not associated with PD. The disease has progressed as you would expect but its acceleration is following a very low ramp, thanks to the help of my doctors and continued advances in PD research. I am still active in the workforce and play golf as often as I can. All in all, I am far from giving in to the limitations of PD, but rather I’m planning to — as the late Paul Harvey said at the start of each of his radio shows — “stand by for the rest of the story.”
Kalynda K. Gonzales, PhD, is passionate about her work. As a Florida International University neuroscientist in the Robert Stempel College of Public Health & Social Work, she’s trying to explain the underlying causes of Parkinson’s disease (PD) in the hopes of discovering better treatments. She also serves as a member on the Parkinson’s Foundation South Florida Chapter committee. Her dedication and enthusiasm for a cure is inspiring.
Growing up as a ballerina Dr. Gonzales was always interested in movement, but several injuries altered her life’s course toward a medical profession. Her career as a physical therapist introduced her to patients with Parkinson’s. Getting to know them and their symptoms inspired her to devote herself to a new scientific/research career trajectory that she has been dedicated to for the last 15 years.
In her career Dr. Gonzales has learned that PD is a spectrum disorder, meaning people with PD have various combinations of motor and cognitive symptoms. The diagnosis and treatment of PD is difficult.
“How does one address such a problem?” asked Dr. Gonzales. “My research originally focused on characterizing idiopathic PD, as this accounts for most cases, by my recent interest centers on forms of parkinsonism that are induced by environmental, occupational, and/or drug exposures. I strongly believe that knowledge of the pathology and pathophysiology of these parkinsonian syndromes may eventually help us to better understand idiopathic PD.”
Dr. Gonzales currently studies a unique PD model induced by toxic levels of the metal manganese. Her research may contribute to the reinstatement of E.P.A. regulations in the U.S. to set limits on manganese exposure. She collaborates with multiple labs who research PD at FIU, in hopes that working as a team will lead to a more efficient approach to explaining how PD works.
As for her involvement with the Parkinson’s Foundation, she says, “My work with the Parkinson’s Foundation serves as my fuel. I am inspired by the incredible effort they put forth to help those with PD and their families. It is important for me to not get stuck in my research bubble and to be in touch with the faces and stories of individuals with Parkinson’s disease – because they are the true underlying motive for what I do.”
In just a few short years, life took several unexpected turns for Leslie Peters. Leslie and her husband, Steve, were busy parenting and working full-time when their lives were touched by Parkinson’s disease (PD) — twice. First, Steve’s mother moved in with the couple to get help managing her advancing Parkinson’s. A few years later, in the wake of his own PD diagnosis, Steve went from working as an executive in the financial sector to applying for social security.
For years, the couple isolated themselves in their home and hearts. Fast forward to this past April when they went to the Colorado capitol to obtain a Governor-issued Parkinson’s Awareness Month decree made possible because of their advocacy.
Before Steve and Leslie evolved into the PD advocates they are today, they went years not telling friends about Steve’s diagnosis. Gradually, Steve became committed to not letting the disease take over his life. Just recently, he underwent deep brain stimulation surgery and the couple decided to simplify life and downsize their home.
They learned a lot about PD when Steve's mother, Mary, moved in with them: "We didn’t know anything about Parkinson’s then, but we quickly learned,” Leslie said.
Soon after Mary passed away, Steve developed a tremor. The couple was shocked to discover that Steve, too, had Parkinson’s. The first support group they attended was not for them: “As a couple with teenage children, it was scary for us to see more advanced PD and envision what our future might hold,” Leslie said.
Luckily, a year later, they found a social group of 40 people with Young-Onset PD and caregivers who meet over dinner. “We were hesitant at our first dinner, so we just observed.”
Leslie and Steve enjoy the dinners so much that Leslie recently became the group coordinator. She has big plans. Through her participation with the Parkinson’s Foundation, Leslie is more determined than ever to help the newly diagnosed in the Denver area any way she can. Even with a full-time job, she speaks to people new to the Parkinson’s community one-on-one and plans to introduce a support group component for caregivers and people with PD.
The once isolated couple are now PD advocates. Leslie has traveled to Capitol Hill to advocate for research and now Steve is on board. Together, they joined a local Parkinson’s advocacy group.
Then last year, Leslie’s PD awareness efforts led her to apply for the Parkinson’s Foundation People with Parkinson’s Council, where she helps guide foundation programs and resources. Most recently, Leslie has provided her input as a PD caregiver to help improve the foundation’s new website parkinson.org.
At the end of the day, Leslie comes home to Steve in their smaller, one-level home in a community that provides home maintenance. “I didn’t realize how often we were taking care of the house,” Leslie said, "even though I now manage the bills, we have a lot of free time to just do things together.” With their adult children living in their own homes, the couple recently adopted a puppy, Tucker, that giddily walks with Steve. “We love getting together with friends from our social group and do a lot of hiking and exploring,” Leslie said.
Leslie continues to meet with spouses who are new to the world of young-onset Parkinson’s — an opportunity she never found. She tells them to provide their partner with emotional support from the beginning, but to remember that the whole family is going through a huge adjustment. “I know that this disease can be life-changing for caregivers,” Leslie said, "we are often so focused on supporting our loved ones that our own needs go unaddressed. Reach out for help and remember that the Parkinson's Foundation is here to make sure that doesn't happen."
If I learned one thing from being diagnosed young, at 21, it is that getting young-onset Parkinson's disease (YOPD) is not a death sentence. Life will get tougher; you just have to find a way to adapt. My motto is “Embrace the shake.” Make fun of yourself, which in my experience helps people feel more relaxed around you. My Dad and I constantly joke about it.
I have also learned that you are your most important advocate. It is OKAY to ask for help, and it is OKAY to politely deny the request. 2020 has become the year of virtual. That is actually a great thing for us (people with PD) because it broadens the way and places that our stories can get shared. Instantly we can get our story out to millions of people like we have never been able to before.
The best thing I have done for myself is finding a therapist that I can talk to about my journey. No matter your age, we all struggle with the different aspects of this disease. She helps me work through the anxiety and depression that can come with Parkinson's.
Live your life the way you want to live it ― mine is full of adventures. Since getting diagnosed my senior year of college I still managed to graduate with my class. I have worked as a special education teacher and am now an after-school care teacher. But the most important thing that has happened to me in the past nine years is: I got MARRIED.
Do what makes you happy. Make friends with and without the disease. I have my friends who have Parkinson's who I can vent to and they can do the same with me. Then I have my set of friends who don't have Parkinson's. They remind me that I am a “normal person” and treat me the same as before I had it.
Just remember to keep rolling with the punches. Take things day by day. Most important is to laugh often and educate others. #LetsFindAcure
Update: Since submitting her PD Story, Samantha participated in the Parkinson's Foundation genetics study, PD GENEration: Mapping the Future of Parkinson’s Disease. "I have Young-Onset Parkinson's and PD GENEration gave me incredible insight into my own Parkinson's. It better abled me to educate my family members who would ask if they are carrying the same gene I have. Thank you to the Parkinson's Foundation for making this possible."
