Last month, I raised money for our Parkinson’s community through a Parkinson’s Foundation Champion fundraiser called “Pars for Parkinson’s” where I played 100 holes of golf over two consecutive days with family and friends. In this article, my daughter, Anna, interviews me about the event. My name is Mike DeBartolo, 58, and I was diagnosed with Parkinson’s disease (PD) four years ago.

Why play 100 holes of golf for Parkinson’s?

To inspire myself and hopefully inspire others that we can adapt the way we play to enjoy games and activities we like doing.

I was thinking about ways I can give to our Parkinson’s community. Since Parkinson’s has me learning new ways to play golf, I figured hosting a Parkinson’s Foundation Champion event is a meaningful way to put the fun into fundraising. Thankfully, family and friends stepped up generously to support me and our community by donating to the Foundation, and several joined me for nine or 18 holes throughout my two days of play.

Any memorable stories from the experience?

From teeing off for a 6:30 a.m. sunrise with three dear friends to playing the closing holes in full moonlight with my best friend and his two sons, throughout the event I was joined by family, life-long friends, new friends, former golf teammates, neighbors and even deer. We played at the local course, aptly named the Playfield, where I first learned the game at nine years old. Now, 50 years later, it’s my go-to course where I relearned how to play the game with Parkinson’s these past few years.

My friend Hank joined me ― we began golfing in our childhood. It was very special. It was a joy having my wife Terry join me on the course and see her return to a game she played long ago. We look forward to playing together in the months and years ahead. A favorite moment was seeing my friend Dave, who also has Young-Onset Parkinson’s, nearly make a hole in one. Remarkably, Dave’s tee shot finished three inches from the hole.

100 holes of golf over two days. Did you get tired? 

I did. During the fourth round, my back stiffened. I thought, oh boy, this could get interesting. Remarkably, the stiffness went away, which with PD was an unexpected blessing.

Since my coordinated precision can be way off, I have adapted the way I play. I deploy lots of forgiving practices on the course to make the game easier and more fun. I don’t keep score other than tally the number of birdies I make throughout the year. My adaptations enable me to once again play a game I love. I have come to look at a golf course as a playground and Parkinson’s as an invitation to play the game any way I want in the company of family and friends.

How did the Parkinson’s Foundation help?

The Parkinson’s Foundation team encouraged me from the start and helped promote “Pars for Parkinson’s,” including web page design and use of a funding link channeling all gifts directly to the Foundation. Gifts made triggered an instant email enabling me to personally thank family and friends as gifts were made. Learn more about Parkinson’s Champions now.

What’s the money being raised for?

All monies raised goes to the Parkinson’s Foundation and their commitment to make life better for people with Parkinson’s disease by improving care and advancing research toward a cure.  Their dedicated focus in each of these vital areas and their caring team makes the Foundation a natural partner.

Any advice for others who may be considering raising money for Parkinson’s?

Pick any activity you enjoy, ask family and friends to support you and the Parkinson’s community by making a gift of any amount, and invite them to join you in the activity. Walks, bikes, swims, dances, bowling, darts, fitness exercising, yoga, play friendly sports are all possibilities. The key is to have fun with it and let Parkinson’s motivate you and people who care about you in their giving and participation. And, of course, to be grateful for those who care about us.

How can people benefit from “Pars for Parkinson’s”?

Hopefully, this event is an example of finding joy in living with Parkinson’s and inspiration to not throw in the towel on playtime and games you have enjoyed in life. Perhaps my experience shows by finding creative ways to adapt to conditions and adjust expectations, we can find joy in activities we once liked and new activities worth giving a go. Perhaps this outlook can inspire those without Parkinson’s too.

What’s next? Will “Par for Parkinson’s” become an annual tradition?

God willing. Though it may take a different form next year around another game I have adapted to enjoy. Tennis for Parkinson’s anyone? Stay tuned!

Become a Parkinson’s Champion at Parkinson.org/Champions.
Let us help you design your own event!

Parkinson's disease (PD) is usually described as a movement disorder of the nervous system that worsens over time. Parkinson’s is believed to be the result of dopamine-producing neurons (nerve cells) in the brain gradually dying off. When approximately 80 percent of dopamine is lost, the hallmark symptoms of PD emerge, such as tremors in the hands, arms, legs, jaw or head, slowness of movement, stiffness in the limbs and trunk of the body, and difficulty with walking, balance and coordination.

However, PD also has non-motor symptoms, such as problems with attention, planning, language and memory. One impairment in particular may not be getting the attention it deserves: visual impairment.

In people without Parkinson’s, visual impairments are associated with falling, bone fractures, depression, anxiety and dementia. People with PD are not only at an increased risk for these issues but can experience intensified visual impairments ― because they rely on visual cues to help compensate for movement challenges. Understanding how visual impairments impact the health and quality of life of people with PD is paramount.

Recently published in the journal, Movement Disorders, “Visual Impairment Is More Common in Parkinson’s Disease and Is a Risk Factor for Poor Health Outcomes” (Hamedani, Abraham, Maguire, & Willis, 2020), a study found that visual impairment is 60 percent more common in PD than the general population.

This study used Medicare claims data from 2010 to 2014 to analyze the burden of moderate to severe visual impairment of 26,209,997 Medicare beneficiaries, age 65 and older, with and without PD. Data was analyzed (using a statistical model) to examine visual impairment and incident hip fracture, depression, anxiety, dementia and death. The frequency with which those with PD had a professional eye exam was measured and demographic data was gathered.

Results

• Of the 26,209,997 unique Medicare beneficiaries, 287,010 (1.1%) carried a diagnosis of PD, and 187,572 (0.72%) carried a diagnosis of moderate to severe visual impairment.
• Visual impairment is 60% more common in PD than the general population.
• Moderate to severe visual impairment was associated with increased hip fracture, depression, anxiety, dementia and death, in both the general population and those with PD.
• Approximately only 40% of those with PD had a yearly eye exam.
• In both PD and non-PD populations, the prevalence of moderate to severe visual impairment increased with:
  • Age
  • Black or Hispanic ethnicity
  • Medicaid eligibility
  • Female sex
  • Diabetes
  • Hypertension

What Does It Mean?

The prevalence of moderate to severe visual impairment in the Parkinson’s population is more common than those who do not have PD. This visual impairment is associated with increased risk of accidents, cognitive issues, and death in both people with and without PD. Those who fall into certain demographics or have conditions, such as diabetes and hypertension, are more likely to have moderate to severe visual impairment. It is important to know that many comorbid conditions (e.g., diabetes, anxiety, depression and hypertension) can be managed and treated; plus, Medicare pays for annual eye exams.

It is imperative that attention be given to these study findings, and more research conducted. Understanding these relationships is an essential component to helping develop interventions and patient education efforts to improve health outcomes and quality of life for people with PD.

As an aside, while not addressed in this study, dopamine is known to play a key role in retina health and numerous other visual functions, such as light regulation, contrast sensitivity, color vision and visuospatial construction. Further, there is research to suggest that alpha-synuclein overexpression affects dopamine neurons in the retina. Expanding research to incorporate the role of dopamine and alpha-synuclein is surely warranted.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the association of vision problems and PD by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

• Vision Changes
• Non-motor Symptoms: What’s New? Part 2
• Seeing Clearly with PD: Vision Changes

Have you wondered if your or your loved one’s Parkinson’s disease (PD) diagnosis can be linked to genetics? How can knowing if you have a genetic tie to Parkinson’s help you manage your disease?

The newest Parkinson’s Foundation initiative, PD GENEration: Mapping the Future of Parkinson’s Disease, is committed to helping people with Parkinson’s answer these questions while furthering critical Parkinson’s research. The groundbreaking initiative offers genetic testing and genetic counseling for people with Parkinson’s at no cost. How exactly does it work?

After a successful pilot program phase, the Parkinson’s Foundation is currently increasing nation-wide enrollment in the study. PD GENEration research participants can now take part in the study from home or in person. Participants can complete a genetic test at home through a healthcare professional-guided telemedicine appointment or complete in-person testing in cities across the U.S. To see if a PD GENEration site is near you and to schedule an appointment, enroll now. Please allow up to two hours to complete an in-person appointment.

ENROLL NOW

How can genetic testing potentially help me?

When you and your doctor know which genetic mutation you have in relation to PD, you may qualify for enrollment in more clinical trials and help improve your PD management in the future. By completing PD GENEration genetic testing, you can help accelerate scientific research to improve understanding of PD and potentially identify new and/or better treatment options.

We’re here to help. For more information, email us at Genetics@Parkinson.org or call our Helpline at 1-800-4PD-INFO (473-4636) to speak with a Helpline specialist in English or Spanish.

Historically described as being on opposite ends of the spectrum, apathy affects about 40% of people with Parkinson’s disease (PD), while impulse control disorders (ICDs) affect between 14% and 40% of people with PD. How are they different?

Apathy ― which comes from the French, apathie, meaning “passionless existence” ― is the feeling of being emotionally flat, lacking enthusiasm or interest in doing anything. Apathy can express itself in different ways, often leading people who experience it to stop exercising, keeping up with friends and family or even stop taking medications. Of note, apathy is often confused with depression, but they are not the same: with depression, there’s a profound sense of feelings of guilt and worthlessness.

Impulse Control Disorders (ICDs) are the inability to stop doing something that is harmful, or could become harmful, to yourself or others to the point that they impair one’s ability to function at work, home and navigate day-to-day life. Performing the activity can lead to a feeling of elation. Examples include online gambling, compulsive shopping and hypersexuality.

Since apathy and ICDs elicit opposite feelings, is it possible for a person with PD to experience both at the same time? It seems counterintuitive, but may not be. A study recently published in the journal, Neurology, “Co-occurrence of apathy and impulse control disorders in Parkinson’s disease”(Scott et al., 2020) sought to explore whether a lack of motivation or interest can co-exist with an irresistible urge to perform activities.

Michael S. Okun, MD, Parkinson’s Foundation National Medical Director, and the team of study co-authors utilized a convenience sample of 887 people with PD from the University of Florida Norman Fixel Institute for Neurological Diseases, a Center of Excellence, and characterized them by disease combination; they used a variety of tests to measure apathy, depression, anxiety, cognition and ICD.

Demographic data were taken, including PD onset, disease severity, as well as medication use. Medication was of particular interest because in addition to relaying messages that plan and control body movement, dopamine also plays a primary role in the reward pathway in one’s brains (the “feel-good” chemical).

Study participants included those with Parkinson’s experiencing:

• An impulse control disorder (ICD): those with clinically significant ICD symptoms only
• Apathy: those with clinically significant apathy symptoms only
• Both: those with both clinically significant apathy and ICD symptoms
• Neither: those with neither clinically significant apathy nor ICD symptoms

Results

• 61.6% of study participants had both ICD symptoms and apathy
• 41.3% of study participants with apathy also had ICD symptoms
• The ICD-only group had higher daily dopamine agonist medication use than patients in the apathy group
• There was no significant difference in dopamine agonist use between the Neither group and the apathy group
• Anxiety and depression each positively correlated with both apathy and ICD symptoms, separately

What Does It Mean

A person with PD can indeed experience both apathy and ICDs ― suggesting they are not on opposite sides of the spectrum. In fact, a significant majority (62%) of those with PD in this study with ICDs had clinically significant apathy; while 41% of people with PD experiencing apathy also had ICD symptoms. Further, having both apathy and one or more ICDs resulted in having the highest levels of anxiety and depression.

“The findings from this study challenge the longstanding dogma that apathy cannot co-exist with impulse control behaviors. Although it seems counterintuitive, clinicians should appreciate this possibility.”

- Dr. Okun

This study suggests that it is imperative that clinicians, researchers, healthcare providers and care partners consider that these two PD symptoms are not mutually exclusive ― you can experience both at the same time. Knowing that someone with PD could have apathy and ICDs simultaneously, could profoundly impact clinical study designs, how novel medications are designed and tested, the approach (and mindset) of caregivers, and perhaps how those with PD think about themselves.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about apathy and impulse control by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

• Apathy and Parkinson’s Disease
• Apathy
• Impulse Control and Parkinson’s disease
• New Study Examines Impulse Control, REM sleep and Dopamine

With climbing COVID-19 numbers, the Centers for Disease Control and Prevention (CDC) recommends not traveling for the holidays. If you are planning to visit members of your family this holiday season, we have information and planning tips to help get you through the rest of this year.

On November 12, Michael S. Okun, MD, Parkinson’s Foundation National Medical Director, led our Facebook Live event “Navigating Parkinson’s and COVID-19.” Dr. Okun highlighted tips for the PD community to survive and to thrive during the 2020 holiday season.

Question: What advice would you give for those living with chronic conditions like Parkinson's disease (PD) this holiday season, especially when holding family gatherings?

Dr. Okun: Follow the three C’s all holiday season, and well into 2021:

• Cover. Always wear a two- or three-ply face mask (like a surgical mask) when you are around others or in public. Don’t wear bandanas or gaiter face coverings.
• Control. Control your environment. If possible, attend holiday gatherings or family events outdoors. It is safer to not be in close proximity to others indoors.
• Contain. Keep your gatherings to 10 people or less. Walk or sit six feet or more away to eat or drink. Don’t take your mask off to eat or drink around people who don’t live with you (in your house).

Should I get the flu shot?

COVID-19 or not, get the flu shot. Our hospital and other hospitals are seeing people who can get COVID-19 and the flu together, a potentially deadly combination. I advise every patient to take the flu shot.

What unique considerations should people with PD and their families keep in mind to celebrate the holidays?

First, follow the 3 Cs. Next, if you travel, try to travel by car. Getting on airplanes can add another layer of risk. If you want to be extra cautious, wait out the holidays this year. Keep in mind that research already shows that people with chronic diseases (like Parkinson’s and diabetes) have a hard time recovering from COVID-19. It is important that you treat this virus with gravity and seriousness.

Should I travel by plane?

COVID-19 numbers are high right now and air travel may not be the best idea. If you plan to travel by plane, remember that planes have closed environments. Keep your mask on, consider wearing two masks (or a N95 mask), try to keep a distance from others and wear protective eye wear (not just glasses).

Does cold weather make Parkinson’s symptoms worse?

Stress, anxiety, sleep deprivation and cold weather can all make PD symptoms worse. Stay warm. Keep in mind that when you are bundled up and wearing your mask, sometimes you can’t see your feet, which can make people with balance issues prone to falling. Curbs, uneven or icy surfaces can be particularly tricky for people with Parkinson’s, so when outdoors hold on to your loved one to stabilize yourself.

I have Type I diabetes and Parkinson’s. Anything I should keep in mind for the holidays?

Having both makes it more difficult to recover from COVID-19. If you have either one, and especially both, be extra careful when thinking of attending holiday gatherings. Consider wearing a double mask (or N95) and follow the three C’s. The CDC has asked that the public not buy up all the N95 masks unless someone is at a high risk.  If you buy a N95 mask you should contact your local hospital to do a fitting and see if it is appropriate for the contours of your face.

Can I catch COVID-19 through a holiday meal?

You can safely eat food that others have cooked. If you eat takeout food, we are not seeing a lot of hard evidence that food packages can transmit the virus to you. Nonetheless, to be safe, before serving food, place it on another plate or in another bowl and wash your hands.

What should I do if I have an immune deficiency syndrome and also have Parkinson’s?

Talk to your doctors, but in this scenario, you may want to take the extra precaution of staying home this holiday season. Your doctor can outline a risk benefit ratio for you.

Do you have any tips for managing depression, demoralization and loneliness during the holidays?

People with Parkinson’s are already apt to experience higher levels of stress, anxiety, depression and demoralization. The holidays can exacerbate any of these Parkinson’s related symptoms. Additionally, more than half of caregivers experience caregiver strain. These are all issues we need to do a better job addressing. Here are some tips:

• Talk to your doctor. You may have medication options available that can help. 
• Stay engaged. The Parkinson’s Foundation PD Health @ Home program has a steady stream of new weekly events you can attend online.
• Try new things. There are a lot of guided meditation and stress management programs out there. There is even guided meditation through a virtual reality machine called an Oculus.
• Virtually volunteer. If you do not plan on leaving the house, look for ways you can volunteer virtually through local PD programs or the Parkinson’s Foundation. Learn more at Parkinson.org/Volunteer.

Are you excited about the COVID-19 vaccine?

If one of the vaccines reported in the news is 90-95% effective, then it will be more effective than we hoped. We need the data and we need more details before making a judgement. There will be a few types of vaccines and we are excited to see the data, which will soon be publicly available. The top scientists in the world will be looking at this data. We want to observe how certain age groups and people with chronic illnesses do after receiving the vaccine. The real takeaway is, if your doctor or a medical expert is taking the vaccine, then you should probably follow. With or without a vaccine, the most important thing you can do is wear a mask.

Remember that wearing a mask throughout the entire holiday season and beyond will be necessary to get us out of this pandemic as fast as possible (with or without a vaccine). Research has already shown us that if everyone wears a mask, we can protect one another and minimize the spread (e.g. examples from other countries). Stay safe and healthy this holiday season.

For Parkinson’s information, references to online programs and local resources, along with support, please contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636).