Deep Dive Conversations About 5 Common Non-Movement Parkinson’s Symptoms
When it comes to Parkinson’s disease (PD), non-movement symptoms are often overlooked because they are not as visible as those of their movement counterparts. However, these symptoms can be just as challenging to everyday life. Learning the common signs can help you recognize and manage symptoms.
Explore our podcast episodes where we dive into non-movement symptoms. Each episode highlighted below strives to deepen your understanding of these symptoms, as well as offer strategies for managing them.
Apathy, a lack of interest or motivation, can be an issue for people with Parkinson’s and may interfere with daily activities, social interactions and overall well-being. Movement Disorders Neurologist, Nabila Dahodwala, MD, MS, Director at the University of Pennsylvania, a Parkinson’s Foundation Center of Excellence, explains the impact of apathy on daily life and shares strategies to help address it and find the motivation to exercise.
Depression is often overlooked and undertreated, despite it being a common symptom of Parkinson’s. Veronica Bruno, MD, MPH, a neurologist specializing in movement disorders at the University of Calgary, a Parkinson’s Foundation Center of Excellence, discusses the importance of recognizing and treating depression.
Low blood pressure, also known as hypotension, can be dangerous if not treated. It may cause dizziness, fainting and falls, which can lead to fractures. Jeni Bednarek, RN, BSN, ACRP-CP, the team coordinator at Oregon Health and Science University, a Parkinson’s Foundation Center of Excellence, talks about how people with Parkinson’s can manage low blood pressure.
Nausea, or the feeling of discomfort in the stomach, can sometimes be caused by Parkinson’s, or as a side effect of medications. Andrew Feigin, MD, Professor of Neurology and Director of the Fresco Institute for Parkinson’s and Movement Disorders at New York University Langone Medical Center, a Parkinson’s Foundation Center of Excellence, discusses the causes of nausea, both from PD itself and from medication, and what people can do to help lessen or prevent it.
Difficulty sleeping can impact your overall health and well-being. Dr. Aleksandar Videnovic of Harvard Medical School and Director of the Division of Sleep Medicine at Massachusetts General Hospital, a Parkinson’s Foundation Center of Excellence, discusses the causes of sleep problems, including insomnia, REM sleep behavior disorder and daytime sleepiness.
Subscribe to our podcast. Search for “Substantial Matters: Life and Science of Parkinson’s” on your favorite podcast platform.
The Moving Day Atlanta Corporate Kickoff Breakfast is an opportunity for business and community leaders to come together in support of the Parkinson’s Foundation’s mission to make life better for people living with Parkinson’s disease (PD).
Enjoy a complimentary breakfast while hearing powerful stories from our Parkinson’s community and learning how your organization can get involved with Moving Day Atlanta—the Parkinson’s Foundation’s signature fundraising walk.
Whether you are a long-time supporter or exploring partnership for the first time, this event offers meaningful ways to engage your business, build community impact, and support the Foundation’s vital work to improve care and advance research toward a cure.
Because awareness is moving. Community is moving. Georgia is moving.
There is no charge to attend, but registration is required.
Many people with Parkinson’s disease (PD) try speech therapy to combat the changes in voice and speech that are often the earliest signs of Parkinson’s. But Rod Marino went a step further and purchased a karaoke machine so he could start singing on his own, in his basement.
Rod has lived with Parkinson’s for 24 years and has learned to battle the disease with a positive attitude, great sense of humor and a song. He keeps his body strong by staying active and riding a stationary bike every day. He keeps his mind sharp by being active in the community as a board member for the local senior center. He keeps his soul sharp through music.
Rod found out about the Parkinson's Foundation from one of his doctors when he was first diagnosed, who recommended visiting Parkinson.org for helpful information. Early on, Rod read that voice dysfunction and speech issues are the earliest sign of motor impairment in Parkinson’s — specifically that the voice softens as the disease progresses.
To combat the issue, he decided to take voice lessons and now sings every day! After setting up his karaoke machine and using it consistently, his voice therapy turned into passion, and he started singing in public.
Rod finds happiness in making other people happy. He does just that spending time at the local senior center, visiting with members and hosting events, like weekly bingo. He also oversees a singing group that his wife, Diane, conducts.
In time, he formed a band called the Don-Rod Duo with a friend. The band performs at the Sheila Ray Center in Elk Grove Village (IL), farmers markets and other locations in the community.
Diane introduces the duo by telling the story of how music and song have helped Rod maintain his voice. The duo takes the stage and sings a wide range of cover songs that range from Dean Martin and Neil Diamond to Frank Sinatra, adding jokes to entertain the audience.
Today he shares his music and tells his story to the audience members. Stories about his Parkinson’s sometimes come into the light, helping spread awareness about the disease.
Rod's biggest piece of advice is to be open about having Parkinson's and allow family members and friends to help whenever possible. People should not be alone on the journey, as he has found that loved ones are eager to help in any way that they can.
Rod's motto is "Don't give up and stay involved." He is a true inspiration to so many members of the community. He wishes to share his story, so that others may learn how music has helped him on his Parkinson’s journey.
Expert Tips on How to Get Good Sleep with Parkinson's
Sleep recharges our brains and bodies, while boosting mental wellness. People living with Parkinson’s disease (PD) need even more time to reset and restore. Discover how Parkinson’s symptoms, medications or other health problems can impact your sleep, and what you can do to maximize slumber.
This article is based on Trouble with Zzz's: Sleep Challenges with Parkinson's, a Parkinson’s Foundation Expert Briefing webinar presented Aleksandar Videnovic, MD, MSc, associate professor of neurology at Harvard Medical School and director for the Massachusetts General Hospital Division of Sleep Medicine and Program on Sleep, Circadian Biology and Neurodegeneration.
Aging, PD and Trouble with Sleep
As people age, it may be harder to fall asleep and waking up at night can be more frequent. Parkinson’s can further disrupt restorative sleep. As many as 80-90% of people with Parkinson’s can experience a sleep problem during the course of the disease.
Parkinson’s-related brain changes upset the circadian system, sometimes called the body’s internal clock. PD also impacts sleep drive — the growing sensation as day turns to night of the need to sleep. Other elements of PD that can disrupt slumber include:
Parkinson's symptoms, such as tremor or PD-related pain, may emerge overnight as medications wear off. Other symptoms include akinesia (difficulty moving or inability to move), rigidity, dyskinesia (erratic, involuntary movement) and more.
Medications used to treat PD can interfere with sleep. Others can make it harder to stay alert during the day.
Depression and anxiety are extremely common PD symptoms. These and other symptoms, such as hallucinations, can keep a person awake at night.
Changes to the autonomic system, the body’s network for regulating jobs like breathing and blood pressure, impact sleep. Nocturia — excessive nighttime urination — can be common in PD.
Sleep disorders can be exhausting for a person with Parkinson’s, as well as their bed partner. These can include:
Obstructive sleep apnea and other sleep-disordered breathing can obstruct the airway repeatedly during sleep, resulting in coughing, choking and frequent waking. People with sleep-disordered breathing experience microarousals, waking up to 60 times hourly, without recognizing it. Sleep apnea affects up to 10% of the population, impacting people without Parkinson’s and those with PD with the same frequency.
Excessive daytime sleepiness (EDS) may make it difficult to stay awake during daylight hours or cause sudden daytime sleep. PD brain changes and symptoms, medication regimens, co-existent sleep disorders and age-related physical changes can all cause EDS. Up to 16% or more of people with PD may experience poor daytime alertness. Some may be unaware of how EDS affects them. A trusted companion can offer honest input. Sometimes, sleep attacks can come on without any warning, significantly impacting a person’s ability to drive safely.
Restless legs syndrome (RLS), an uncomfortable feeling in the legs or feet and irresistible need to move, can impact some people even prior to a PD diagnosis. However, not everyone with Parkinson’s experiences RLS, nor will most people who experience RLS go on to develop PD.
Rapid eye movement (REM) sleep behavior disorder (RBD): People dream and experience muscle relaxation during REM stage of sleep. RBD can affect up to half of people with Parkinson’s, impacting muscle relaxation and causing people to act out their dreams — talking, yelling or moving about.
Like restless legs syndrome, RBD can begin long before a Parkinson’s diagnosis. Although not everyone who lives with RBD will develop Parkinson’s, their risk of developing PD or Dementia with Lewy Bodies — diagnosed when cognitive decline happens before or alongside motor symptoms — is significantly higher. This is meaningful for Parkinson’s research.
As potential therapies evolve to slow PD progression, there may be a window of opportunity for preventative intervention in people who experience REM sleep behavior disorder but have yet to develop a neurodegenerative disease.
Management Strategies for Fragmented Sleep
Talk to your healthcare provider about sleep issues, fatigue or daytime sleepiness. Your doctor may ask questions about your sleep history. A careful review of each or your medications will help your doctor determine whether a simple adjustment or addition might improve slumber:
Long-acting levodopa or additional levodopa is sometimes prescribed for bedtime use.
Catechol-O-methyl transferase (COMT) is an enzyme in the body. It can impact the effectiveness of levodopa. COMT inhibitors prolong the benefits of levodopa. These are primarily used for wearing off (changes in the ability to move between doses of levodopa) but are sometimes also prescribed with levodopa for use at night.
People taking diuretics might be directed to use them earlier in the day. Likewise, limiting the use of PD medications selegiline and amantadine later in the day might improve insomnia.
Anticholinergic medications are sometimes used for nocturia, however, cognitive slowing can be a side effect. These can also cause confusion and hallucinations and are not recommended in older people.
Caffeine and some stimulant medications can promote alertness during the day.
Mental wellness: Talk to your doctor about symptoms of depression or other emotional challenges. Parkinson’s impacts areas of the brain that regulate mood, sleep, energy and more. Caring for mental health also benefits sleep.
Sleep disorders: If your doctor suspects a sleep disorder such as obstructed breathing, restless legs or RBD, you might be referred for a sleep study in a sleep clinic.
Sleep apnea treatment may require a dental appliance or a continuous positive airway pressure (CPAP) machine that is worn when sleeping or napping.
Dopamine agonists — medications that rouse areas of the brain motivated by dopamine — benzodiazepines, opioids and a class of medications known as calcium channel alpha-2 delta ligands, such a gabapentin, are sometimes used for restless legs syndrome. Dopamine-blocking, anticholinergic and antihistamine medications should be avoided for RLS.
Your doctor may recommend melatonin or the medication clonazepam for RBD. While antidepressants may help with some aspects of insomnia, some can unmask or worsen RBD.
Tips to Improve Shut-eye
A healthy sleep routine — sometimes called sleep hygiene — is another key component to a good night’s rest. Try these small changes that can make a big difference:
Exercise regularly (aim for early in the day) to improve sleep quality and overall function.
Limit naps: a short snooze earlier in the day, of 30 minutes or less, is less likely to interfere with nighttime sleep.
Avoid stimulants, such as caffeine, later in the day.
Minimize your screen time before bed. Avoid screens entirely — including TV and mobile devices — in the bedroom.
Go to sleep and rise at the same time, weekdays and weekends.
Turn the lights out: light regulates the body’s clock, signaling that it is time to wake.
Employ motion-detecting nightlights to safely guide you to the bathroom.
Sleep in a wider bed that is lower to ground. This can minimize injuries and lessen the impact in case of an accidental fall.
Consider a bedside rail to prevent falls; a bedside commode can also be helpful for people who have difficulty getting to the toilet at night.
Use satin or silk sheets or pajamas to make it easier to turn in bed.
Adequate hydration can improve PD symptoms, boosting low blood pressure and easing constipation. However, drinking liquids too close to bedtime can cause frequent nighttime urination. Minimize beverages a few hours before bed.
Research
Light hitting the eyes is one of the biggest environmental factors regulating the circadian system. The timing of meals, exercise, naps and rest also influences our body clock. In turn, this timer regulates our mood, behavior, immune response and more. Researchers are exploring ways to improving circadian system function in PD.
Light therapy shows great promise as a noninvasive, widely available, nonpharmacological treatment to ease non-movement symptoms of Parkinson’s, including fatigue, sleep issues and mood changes.
In a 2017 JAMA Neurology journal study, Videnovic et al. found that exposure to bright light (10,000 lux) or dim-red light (less than 300 lux) — twice daily in one-hour sessions over two weeks — improved daytime alertness and sleep quality.
Those findings were carried over into the recently completed ENLITE PD trial conducted at 25 sites across North America. The study analyzes the effect of daily light therapy on PD symptoms, including sleep. At the time of this Expert Briefing, the study’s authors were preparing to submit their findings for publication, with the aim of conducting a phase III clinical trial.
Learn More
To learn more about Parkinson’s and sleep explore these resources:
Videnovic, A., Klerman, E. B., Wang, W., Marconi, A., Kuhta, T., & Zee, P. C. (2017). Timed light therapy for sleep and daytime sleepiness associated with parkinson disease. JAMA Neurology, 74(4), 411. https://doi.org/10.1001/jamaneurol.2016.5192
Deep brain stimulation (DBS) is a surgical therapy used to treat certain aspects of Parkinson’s disease (PD). This powerful therapy most addresses the movement symptoms of Parkinson’s and certain side effects caused by medications.
This video features a voiceover from Dr. Michael Okun, the National Medical Advisor for the Parkinson's Foundation.
Controlando los síntomas de la enfermedad de Parkinson
Hay mucho que saber acerca de la enfermedad de Parkinson. Aprenda cómo se trata y, lo más importante, cómo llevar una vida mejor con Parkinson.
El Parkinson es una enfermedad individualizada. Si bien la experiencia de cada persona con el Parkinson es única, cuanto más sepa, más empoderado estará para desempeñar un papel activo en su autocuidado y manejar su vida con Parkinson.
The National Parkinson’s Project is a first-ever federal initiative to prevent and cure Parkinson’s disease, treat its symptoms and slow or stop its progression. The National Parkinson’s Project is being carried out under the National Plan to End Parkinson’s Act, by the Secretary of Health and Human Services (HHS).
What’s Next
The U.S. Department of Health and Human Services is building a supporting advisory council to develop the National Parkinson’s Project. This is a collaborative effort, as government agencies and leaders in the PD space, including the Parkinson’s Foundation, will provide essential community input and planning support.
The National Parkinson’s Project will encompass research, care, and services for Parkinson’s and all other neurodegenerative Parkinsonisms, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson’s-related dementia.
To receive updates on the Act, please sign up for the NIH listserv.
January 2025 Update
National Plan to End Parkinson's Update: NIH Seeks Nominations for Advisory PD Council
The National Institutes of Health (NIH) has received a delegation of authority to lead the implementation of the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act, which was signed into law on July 2, 2024. Along with the HHS Office of the Assistant Secretary for Health (OASH), the National Institute of Neurological Disorders and Stroke (NINDS), part of NIH, will co-chair the Advisory Council on Parkinson’s Research, Care, and Services called for in this Act.
The NIH, with support from OASH and in collaboration with the Council, will create, maintain, and periodically update a National Plan to prevent, diagnose, treat and cure Parkinson’s, as well as stop disease progression.
The National Plan will encompass research, care, and services for Parkinson’s disease (PD) and all other neurodegenerative Parkinsonisms, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson’s-related dementia.
To receive updates on the Act, please sign up for the NIH listserv.
September 2024 Update
President Biden Signs Parkinson's Bill into Law
How to Make an Impact on Parkinson’s National Day of Action
On September 17, 2024,thousands of policy advocates across the country will virtually rally together to urge elected officials to take steps to better understand and address environmental risk factors for Parkinson’s disease (PD).
Led by the Unified Parkinson’s Advocacy Council, the Parkinson’s National Day of Action is entirely virtual, and it only takes a few minutes to participate! On September 17:
Sign a petition to the White House urging them to ban paraquat, a harmful herbicide thought to increase Parkinson’s risk by as much as 500%.
Call your member of Congress to ask them to cosponsor the HEALTHY BRAINS Act (H.R. 9233). This new bill would direct the federal government to research environmental risk factors for neurodegenerative diseases like Parkinson’s.
Call Congress directly from your phone by looking up your senators’ and representatives’ office numbers online or by calling the U.S. Capitol Hill switchboard at 202-224-3121 and ask to be connected to their offices.
More than 1 million Americans live with Parkinson’s, the second most common and fastest growing neurological disease. Help us get closer to a cure by participating in the Parkinson’s National Day of Action!
July 2024 Update
On July 2, 2024, President Biden signed the National Parkinson's Project into law. This is the first-ever federal legislation dedicated to ending Parkinson’s disease (PD).
Top five ways this monumental bill can make an impact:
Dramatically increase federal research funding
Develop more effective pathways for treatments and cures
Improve early diagnosis
Spark new and improved models for patient care
Address health disparities in diagnosis, treatment and clinical trial participation
“The Parkinson’s Foundation is excited for what comes next,” said John Lehr, Parkinson’s Foundation President and CEO. “We look forward to having input in designing exactly how this bill will mobilize meaningful change for the one million Americans living with this disease.”
The Parkinson’s Foundation would like to thank all the PD advocates, volunteers and people who wrote to their senators and representatives to make this bill to become law. We also thank President Biden and members of the U.S. Senate and House of Representatives for helping us make PD history.
Spread the word!
Share this monumental victory on your social media channels! Get friends and family excited that Parkinson’s disease has received legislative support.
July 2, 2024: President Biden signs the National Parkinson's Project S.1064/H.R.8585), the first-ever federal legislation dedicated to ending Parkinson’s.
May 23, 2024: U.S. Senate passes the Act.
December 14, 2023: U.S. House of Representatives passes the Act.
March 29, 2023: the Act is reintroduced in the House and Senate for the 2023 session.
What’s Next?
Follow us on social media (Facebook, X, Instagram and others) to stay up to date on what happens next. We are excited to document the process and any movement spurred by the new Act and our involvement alongside the Michael J. Fox Foundation and other leaders in the PD space to establish next steps.
May 2024 Update
On May 23, 2024, the U.S. Senate unanimously passed the National Plan to End Parkinson’s Act, the first-ever federal legislation dedicated to ending Parkinson’s disease (PD). Next, the bill will be sent to President Biden’s desk to be signed into law. The bill passed with overwhelming bipartisan support in the U.S. House of Representatives in December.
“As we eagerly await the bill to be signed into law, we applaud members of congress for their bipartisan support and recognition of one of the most pressing health care issues of our day,” said Parkinson’s Foundation President and CEO John L. Lehr. “On behalf of the Parkinson’s Foundation, I’d like to thank members of the United States Congress for joining the Michael J. Fox Foundation for Parkinson’s Research, the Unified Parkinson's Advocacy Council and the greater PD community in the fight against Parkinson’s disease.”
This monumental bill has the potential to shape the lives of the one million Americans living with Parkinson’s. It is designed to:
Dramatically increase federal research funding
Develop more effective pathways for treatments and cures
Improve early diagnosis
Spark new and improved models for patient care
Create standards and measures to prevent Parkinson’s disease
Address health disparities in diagnosis, treatment and clinical trial participation
Enhance public awareness of the disease
Timeline at a Glance:
On May 23, 2024, the U.S. Senate passed the National Plan to End Parkinson’s Act S.1064/H.R.8585), the first-ever federal legislation dedicated to ending Parkinson’s.
On December 14, 2023, theActpassed through the U.S. House of Representatives.
On March 29, 2023, the Act was reintroduced in the House and Senate for the 2023 session.
What’s Next?
Once President Biden signs the bill into law, the Federal government will begin to establish actionable steps to carry out the plan. The Parkinson’s Foundation looks forward to working alongside the Michael J. Fox Foundation and other leaders in the PD space to help throughout this process.
Content provided by The Michael J. Fox Foundation for Parkinson’s Research (MJFF). Read the MJFF blog article here.
December 2023 Update
Congress Reintroduces the National Plan to End Parkinson’s Act
On December 14, 2023, The National Plan to End Parkinson’s Act (S.1064/H.R.8585) passed through the U.S. House of Representatives. Next, the bill will go to the U.S. Senate.
Now is the time to have all of your members of Congress sign on to support the bill so it will pass this session!
Find our if your state’s Senator and Representative co-sponsored the bill:
Your senators and representatives need to hear from members of the Parkinson’s community about why we need a focused, national strategy to prevent Parkinson’s, find a cure, and ensure those living with the disease can access care.
Specifically, we encourage members of the Parkinson’s community in the U.S. toCall Your Members of Congress.
Call Congress directly from your phone by looking up your senators’ and representatives’ office numbers online or by calling the U.S. Capitol Hill switchboard at 202-224-3121 and asking to be connected to their offices.
Members of Congress and their staff want to know what is important to you and how to best represent you. Your representative and senators need to learn about what it is like living with Parkinson’s — or loving or knowing someone with Parkinson’s — so they can understand why it is important to support The National Plan to End Parkinson’s Act (S.1064/H.R.8585).
Here is an easy way to help you tell your story to members of Congress and their staff:
Hello, my name is ____________________, and I live in _____________.
I would like to ask you to support The National Plan to End Parkinson’s Act (S.1064/H.R. 8585), and I’d like to start off by telling you why it’s important and so personal to me, if that’s okay with you and you have the time.
I was diagnosed/My loved one was diagnosed with Parkinson’s disease in _____. Here is a little bit of information about the impact Parkinson’s has had on my/their life:
Impact at work
Impact at home with daily tasks
Impact on family and friends
Impact on finances
Impact on other areas of life that you wish to share
There is no way to slow, stop, or reverse Parkinson’s from progressing.
There is also no way to prevent Parkinson’s, and there is no cure for the disease.
Parkinson’s is the fastest-growing brain disease in the world, and more than a million people in the U.S. have Parkinson’s.
I’d like to ask you to support The National Plan to End Parkinson’s Act (S.1064/H.R. 8585) so that the government and private sector can come together to end this disease. This is a bipartisan bill, and it comes at no cost. Supporting this bill is important to me and to others in our area and across the United States.
I hope you will help contribute to a cure by co-sponsoring this legislation.
On July 28, 2022, the U.S. House of Representatives introduced the first-ever legislation solely devoted to ending Parkinson’s. This is a historic moment for the Parkinson’s community!
The National Plan to End Parkinson’s Act will, for the first time, unite the federal government and private enterprises in a mission to prevent and cure Parkinson’s, alleviate financial and health burdens on American families, and ensure those living with the disease have access to the care they need.
This bipartisan legislation is led by Representative Paul Tonko (D-NY) and Representative Gus Bilirakis (R-FL). The Parkinson’s community is thankful for its leadership.
Now what?
This bill will go through the traditional congressional process and will need to be voted on by the House. A Senate’s companion bill will be introduced in the coming weeks, because it is standard congressional procedure for both chambers of Congress to pass the bill before it can go to the President for signature.
The public-private advisory council created as part of this legislation will report every year to Congress on their progress and impact in ending Parkinson’s. This is the kind of forward-looking strategy and responsible accountability the Parkinson’s community needs and deserves.
The Parkinson’s Foundation is a member of the Unified Parkinson’s Advocacy Council (UPAC), a collection of nearly 30 Parkinson’s organizations that come together to help shape federal and state public policy in ways that support the Parkinson’s community. There will be many opportunities for all of us to engage our Members of Congress on this legislation and have conversations about the bill and its intended impact, and we will begin to communicate those opportunities in the coming weeks.
Content provided by The Michael J. Fox Foundation
We will update this blog and our social media channels as the legislation advances, so stay tuned! Follow us on Facebook, Instagram and Twitter.
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.
At 48 years old, I heard the words "Troy, you have Young-Onset Parkinson's Disease." It took me some time, but as a public speaker who invites audiences to define success and fulfillment on their own terms, I knew I had to figure out a way to start wrapping my personal stories of Parkinson’s into each presentation. And I did.
On July 12, 2017, I had the opportunity to look into my own life to find strength and inspiration. After more than 18 months of chronic and debilitating pain, fatigue, tremors and other symptoms, I finally had an answer: Parkinson’s. This life-altering diagnosis put my lifelong beliefs to the ultimate test.
Over the next few years, I began finding ways to get involved and build my Parkinson’s community. I became active in organizations that support those dealing with chronic and life altering health conditions, which has helped me gain perspective on my own situation. My recent activity as a Parkinson’s Foundation Heartland Chapter board member is an extension of that work.
Continuing to be a public speaker has inspired me as I am able to incorporate the learnings from my own journey and the stories of other's journeys to provide inspiration to audiences.
I’ve had time to think of advice I’d give to others who are new to Parkinson’s, including:
First, there is not one path in navigating this journey. Each of us must make decisions that are best for ourselves and those who are present to support us.
Learn as much as possible about your symptoms and characteristics that have led to your diagnosis. Because PD manifests itself in unique paths to each person, gathering as much information and perspectives is key to making wise decisions on treatment.
Find a care team that best aligns with your needs. Don't be scared to change that team as time evolves. Your disease will evolve, and sometimes that means changing the team members is needed.
Turn to the Parkinson’s Foundation. The vast amount of information, data and research findings pushed out through emails, Parkinson.org and events has been significant in keeping me informed and hopeful.
My expertise in public speaking has been acquired through years of studying, asking questions of, presenting to and consulting with audiences and groups from Fortune 500 firms to leadership conferences. These principles and traits include hitting control+alt+delete to redefine societal defaults for success; establishing and measuring goals with specific strategies; finding wisdom to overcome adversity and inevitable change.
Now, especially after releasing my first book, Change Is Inevitable, Growth is Optional, I continue to be inspired by the tremendous stories of others who have faced adverse change and find a pathway to growth. This inspiration has led me to me to participate in such experiences as running in masters track meets, fundraising for worthy causes, and speaking before audiences to share my experiences.
Everything so far has led me to my newest way to advocate for people with Parkinson’s: becoming a Parkinson’s Champion and hosting my first fundraiser. On June 8, I will be competing as a Parkinson’s Champion in the 6 in 6 Challenge. I will compete in six track and field running events on the same day in approximately six hours.
I chose the number six because every six minutes someone is diagnosed with Parkinson’s disease. In the roughly six hours it takes me to complete the 6 in 6 Challenge, 60 people will learn of their new Parkinson's diagnosis.
Long before public speaking, running was always my passion. I have been active as a runner since my teenage years. I ran track, coached high school and middle school track, and ran a triathlon (which may be the next challenge.)
In my Parkinson’s experience, I challenge my body each day to get stronger and maintain strength so that I can delay the disease. But for many people with Parkinson's, simple physical activities are an extreme challenge. For those who can't challenge themselves to the level I still can, I am honored to take on a new physical challenge in their honor.
