My PD Story

Anthony climbs a mountain
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Anthony

Anthony Climbed Above Parkinson’s Disease for 740 Days

Following the untimely death of his Dad from Parkinson’s Disease at the age of 59, Anthony set out to honor his Father’s memory and bring awareness and support to Parkinson’s Disease. The journey he chose- climbing the Seven Summits of the World (the highest mountain on each continent)- made certain to cut out his work in advance for him. Since first accomplished in 1984, only a handful of people (approximately 2,500 to date) have achieved the audacious goal. Anthony felt compelled to make his challenge even harder, taking on the chore with minimal to no assistance, and operating in the most minimal fashion possible. His Dad would have been proud of the effort, and Anthony wanted to demonstrate that anything was possible.

Anthony grew up in a military family. “My father was a disciplinarian, but he showed the right kind of love,” Anthony said. “My father held the family together. He was the glue and I admired him quite a bit for his role as our provider.” Anthony’s discipline in life has paid off. He’s always maintained a rigorous exercise routine and has worked hard in pursuit of educational and professional objectives as well.

Anthony’s father began experiencing PD symptoms at 48 and was diagnosed at 52, around the same time Anthony’s mother passed away from cancer. Over the next seven years, he saw his father’s health decline, mostly due to maintaining poor daily habits and not getting regular exercise or eating healthy — all things that don’t improve PD symptoms. Anthony became his father’s caregiver during the last three years of his life, attending to his Parkinson’s needs and subsequently, dementia. Anthony remembers holding his father’s hand until his final moments. “I’m sad I don’t get to share a life with him as I go forward,” Anthony said.

Anthony's father in military uniform

On November 26, 2017, less than one year following the death of his Dad, Anthony stood on the summit of Kilimanjaro, the highest peak in Africa. From here, over the next 2 years and 10 days (740 Days), Anthony would stand on the highest peaks of the world. In order of success following Kilimanjaro- the highest peak in South America (Aconcagua- January 3, 2018), the highest peak in North America (Denali- June 4, 2018), the highest peak in Europe (Elbrus- September 6, 2018), the highest peak in Australia (Puncak Jaya- January 1, 2019), the highest peak in Asia/the World (Mount Everest- Mary 16, 2019), and the highest peak in Antarctica (Vinson Massif- December 3, 2019). Following this final summit, Anthony completed the journey and honored his Father. He also raised close to $40,000.00 for research and treatment of PD.

In preparation for these climbs, Anthony trained in a variety of different ways. He has always been an avid mountain climber, and keeps his fitness to a level where he can “run a marathon off the couch” at any given time. As he worked full-time while training, he had to force the training into odd hours- before work, during lunch, or late in the evening. He fully understood and appreciated what a key role exercise could play in a person’s everyday life, especially for a person living with PD, and to this day still trains competitively.

Anthony climbs a wall of ice

Anthony sees climbing as a metaphor for managing Parkinson’s or helping a loved one fight it. “Mountain climbing is an endeavor that is all about your mind and ability to accomplish something that seems not accomplishable,” he said. “It requires your own two feet — you can’t get to the top of these mountains without your own determination and focus.” Similar to his experiences witnessing his father fight Parkinson’s. Each of the seven summits involved its own unique challenges and rewards: every hike has its own season, specific logistical and technical obstacles. His climbs took as much physical effort as they did mental, not unlike the obstacles Parkinson’s can present to a person and their family.

Anthony hopes his campaign and success will motivate others with Parkinson’s to fight this disease, take care of their health, and find hope and perseverance when something seems impossible.

Advancing Research

What's Hot in PD? Will Drinking Tea Help My Parkinson’s Disease?

Drinking tea together

Tea is an ancient, centuries-old beverage that is consumed by virtually all of the world’s population. Tea is composed of polyphenols, methylxanthine, caffeine, fats, amino acids and other substances. Tea has been thought to reduce cancer risk, prevent heart disease and even aid in weight loss. The flavonoids, caffeine and theanine have been tested in animal models of Parkinson’s disease and have shown protection against cell loss in similar areas of the brain that are affected in the human Parkinson’s patient. In this month’s What’s Hot in PD?, we will examine what is known about tea and Parkinson’s disease.

A recent meta-analysis of all studies on tea and Parkinson’s risk revealed that across 1,418 cases and 4,250 control patients, there was a protective effect of tea drinking on Parkinson’s disease risk. Interestingly, whether you drink one or more cups a day did not impact the risk (1,2,3)

Louis Tan, one of the authors of the Singapore Chinese Health study, reported differential effects of black versus green tea. People in his study who drank at most one cup of black tea a day (but not green tea) decreased their risk of developing Parkinson’s disease. Caffeine also reduced the risk of Parkinson’s disease. This study lends support to the mounting evidence supporting a caffeine Parkinson’s-related benefit. Interestingly, most black teas have more caffeine than green teas (1,2,3).

What should patients understand about coffee and tea drinking and Parkinson’s disease? Consumption of coffee or tea seems to reduce the risk of developing Parkinson’s disease. Once you have been diagnosed with Parkinson’s disease, no matter how much time you spend in Starbucks, you can no longer alter your risk profile. The cat is out of the bag. Consumption of caffeine in moderate doses does however seem to benefit the motor symptoms of Parkinson’s disease. A nice cup of tea might just be what the Parkinson’s doctor ordered.

Michael S. Okun, National Medical Advisor

You can find out more about our National Medical Director, Dr. Michael S. Okun, by also visiting the Center of Excellence, University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life and 10 Breakthrough Therapies for Parkinson's Disease.

Tips for Daily Living

Parkinson’s Disease and Strength Training: Benefits

Women exercising with weights

Exercise is vital for improving balance, mobility and overall health in persons diagnosed with Parkinson's Disease (PD). PD is the second most common neurological disease in the world(1). It is characterized by a deficit in dopamine resulting from a progressive loss of neurons in areas of the brain responsible for movement and coordination(2).

Recently, literature has demonstrated that participating in strength training regularly can improve symptoms, make dopamine use more efficient and possibly even slow the progression of PD! In this article, we will look at why strength training has benefits specific to PD, and discuss ways to make it safe and fun.

Why Exercise?

Exercise is amazing because it changes the way our brain functions. Studies have shown that in people who regularly exercise, brain cells use dopamine more efficiently. This occurs because areas of the brain responsible for receiving dopamine signals – the substantia nigra and basal ganglia, are modified. Exercise also increases the number of D2 receptors in the brain, meaning dopamine has more places to go. Additionally, researchers at the University of Pittsburgh were able to demonstrate that in animal models, exercise increased the amount of a neurotrophic factor called GDNF, which helps protect dopamine neurons from damage(3).

Choose Strength Training

The benefits of strength training include increasing muscular strength, endurance, dynamic balance and cognitive functioning. Recent studies have demonstrated that there are decreases in gross muscular strength in people diagnosed with PD, most notably in the back and hip extensors4. Researchers have speculated that this occurs secondary to postures developed throughout the course of the disease. As people begin to hunch their shoulders and lean forward instead of standing upright, postural muscles become weaker. When postural muscles become weaker, it is more difficult to balance, or recover from perturbations. This increases the likelihood of falling. Strength training is an excellent, safe way to increase strength, stability and confidence for those with PD.

Where to Start

Beginning a new exercise program can be intimidating at first. My suggestion is to find a fitness buddy – a friend or family member to start with, and help you stick to your program. Then, do your research. Build a strong program, and execute it with good form. A great resource for learning to perform exercises correctly is Exrx.net. You can also consult a local fitness expert, or ACSM guidelines for strength training. When exercising, be sure to focus on all 5 major muscle groups – chest, back, legs, arms and core (abdominals).

Tips for Exercising Safely

  1. Check with your doctor before beginning any new exercise program, and continue to take all medications prescribed by doctors. Strength training is not an alternative to medication.
  2. Make sure you hydrate! Drink water before, after and during your exercise to feel better and stay safe.
  3. Bring a copy of your workout with you, so you don't forget any exercises!
  4. Progress slowly. Make goals, and work towards them by perfecting your form and starting with light weights first. Remember, all good things take time. Have patience and enjoy the ride!

Danielle Leshinsky is a Certified Strength and Conditioning Specialist (CSCS) and a doctoral candidate at Emory University School of Medicine's DPT program. She is currently researching with Dr. Madeleine Hackney and the Atlanta VA Center for Visual and Neurocognitive Rehabilitation , looking at the effects of Tango on Parkinson's Disease. She is also working in the INSPIRE laboratory at the Emory Rehabilitation Hospital. Danielle chose to pursue a career in physical therapy because she finds it both challenging and rewarding. She plans to obtain a Specialist Certification in Neurology upon graduation in May 2016.

Raise Awareness

Expert Care Experience: Dance/Movement Therapy

Group of people dancing at exercise class

This blog is the fifth in a series detailing the roles of each member of a comprehensive care team, covering social workoccupational therapy, speech-language pathology and physical therapyLearn more about the healthcare professionals that are part of a comprehensive care team and how you can put your care team together today.

What Is Dance/Movement Therapy?

Dance/movement therapy is a form of psychotherapy that uses movement, in all forms, as a means of observation, assessment and intervention in the therapeutic relationship. Unlike dance, dance/movement therapy does not focus on a stylized choreography, specific set of skills or technique. Instead, it allows individuals to move and find comfort in their bodies and to express what words might be too difficult to uncover.

Dance/movement therapy can help support people with Parkinson’s disease (PD) in the moment, even when it is hard to be present to physical sensation and symptoms.

What Do You Do During a Dance/Movement Therapy Session?

There is no one-size-fits-all session, though there are some common basic components. In an individual session, you will likely start with a warm-up where the therapist guides you through movements, from head to toe.

You will be encouraged to move each body part, no matter how small. This allows you to become more aware of your body and experience your capacity for movement. Next, the therapist will coach you to use your body to express behaviors and thoughts or to explore movement patterns and preferences.

Group sessions might incorporate elements from a support group, a social dance or mindful movement class. For example:

When asked how she felt at the beginning of the dance/movement therapy group, Sally reported feeling isolated, standoff-ish and unsure of her ability to participate because of her tremor and poor balance. The therapist invited Sally to show what that looked like using her body. Sally slumped over in her chair, crossed her arms and lowered her gaze. Sally then lifted her chest, looked up to the ceiling and threw her arms up in the air. With a smile on her face, Sally said, “A weight has been lifted. Now, I feel free!”

Who Is a Dance/Movement Therapist?

Dance/movement therapists are registered or board-certified individuals with a master’s degree in dance/movement therapy. Depending on where they practice, dance/movement therapists may be clinical counselors, social workers, creative arts therapists or psychologists. Most have a background in psychology and dance, with a focus on dance as an outlet for mental health and expression. Dance/movement therapists are required to fulfill clinical internships in such settings as hospitals, treatment facilities, day programs, nursing homes, day schools or even private practice.

A dance/movement therapist is an integral part of the care team because he/she can mesh clinical counseling or social work with movement observation and assessment. The therapist’s keen ability to observe the relationship between movement and mental health helps foster a more holistic, mind-body approach to medicine.

Dance/movement therapists receive referrals from other care team members and often co-treat, co-facilitate and collaborate with them. As part of the team, your dance/movement therapist should communicate with other care team members about treatment plans, symptom management and disease progression.

What Symptoms Can Dance/Movement Therapy Help Treat?

Dance/movement therapy addresses motor and non-motor symptoms of Parkinson’s. It focuses on balance, coordination, gait and mobility, but also uses movement to address depression, digestive complications, anxiety and fatigue.

Furthermore, dance/movement therapy encourages individuals to prioritize their mental health. Embracing the arts as a mode of psychotherapeutic intervention and expression seems to help reduce stigma around mental health issues.

Research specifically on dance/movement therapy with PD is taking off. For example, Northwestern University in Illinois recently conducted a study on the effects of dance/movement therapy on fatigue in people with PD. More researchers are becoming interested in this topic, so expect to hear more about the impact of dance/movement therapy in the future. In the meantime, try it for yourself.

How Do I Find a Therapist or Program?

Dance/movement therapists and programs are all over the country. To find one nearest you, go to The American Dance Therapy Association’s website at www.adta.org. You can find a list of resources and a directory of therapists in your area. The toll-free Parkinson’s Foundation Helpline can also help connect you to information and resources: 1-800-4PD-INFO (473-4636).

Dance/movement therapy is often a wonderful complementary or adjunct therapy for individuals affected by movement disorders. Some dance/movement therapy sessions may be covered by private health insurance, which can make it an affordable and accessible option for treatment of symptoms and maintenance of quality of life. 

Erica Hornthal, LCPC, BC-DMT, is CEO of Chicago Dance Therapy. She is a clinical counselor and board-certified dance therapist who specializes in working with individuals living with movement and cognitive disorders. Additionally, Erica works with people of all ages and abilities to connect the mind and body to promote self-awareness, self-expression, healthy attachments, compassion and improved quality of life. 

For more insights on this topic, listen to our podcast episode “A Western Perspective on PD: Understanding Complementary Medicine”.

Science News

“The Parkinson’s Pandemic: A Call to Action”

Science News Blog header

All Science News articles summarize a research study and are not an official opinion, endorsement or position of the Parkinson’s Foundation’s.

JAMA Neurology, “Viewpoint”, 11/13/17

Authors: E. Ray Dorsey, MD, Department of Neurology, University of Rochester Medical Center, Rochester, NY; and Bastiaan R. Bloem, MD, PhD, Radboud University Medical Center, Department of Neurology, Nijmegen, the Netherlands.

In June 2017, the Parkinson’s Foundation brought together the thought leaders in the Parkinson’s community to discuss the future of Parkinson’s research at an event called, “World Without Parkinson’s” in New York City. At this event, Drs. Dorsey and Bloem stressed the importance of caring for people with Parkinson’s today, and the increasing need for systems to extend the reach and expand the scale of care.  They asked the audience: How can we shift the paradigm within the health care system to be more patient-focused?

People are at the heart of the issue.  At the World Without Parkinson’s event, Drs. Dorsey and Bloem pointed out that if you look at how public health and healthcare are changing lifespans around the world, the resulting growth in the over 65 population will effectively result in a pandemic of Parkinson’s disease. They have now published in JAMA Neurology, a major scientific journal, an opinion piece issuing a clarion call to action to make the voices of the Parkinson’s community heard. They pose the question: if the worldwide number of people with Parkinson’s disease (PD) will double from 6.9 million in 2015 to 14.2 million in 2040, do our efforts reflect the urgency commensurate with the challenge?  What are we doing to treat these millions of individuals to lead healthy lives?  They write that increasing access to care and increasing funds for Parkinson’s research are the answer.

Older man at a doctor consultation

For decades, the Parkinson’s Foundation has been educating and empowering people living with Parkinson’s and their families. We are at the forefront of improving lives for people with Parkinson’s today.  Starting with our focus on today’s patients through the first Parkinson’s advisory council and people with PD research training program, we have extended this vision to include the Parkinson’s Outcomes Project, the largest clinical study of Parkinson’s ever conducted and the only major study with a singular focus on how to improve the lives of everyone living with Parkinson’s today. We ensure better care through our global network of 42 Centers of Excellence and we work to close the gaps in Parkinson’s care by training doctors, nurses, physical therapists, speech language therapists and social workers so they can provide better care to their Parkinson’s patients across the nation and around the world.

We will remain at the forefront of addressing disparities in Parkinson’s care and engaging patients to advocate for better care. As Parkinson’s reaches epidemic-like proportions, it’s clear that this work is more important than ever. We will continue to invest in research and improving lives until a world without Parkinson’s is in reach.

#WorldWithoutParkinsons

Advancing Research

What's Hot in PD? Should We Be More Aggressive in Preventing Weight Loss in Parkinson’s disease?

Older man talking to nurse

Slow and steady weight loss is a known feature of Parkinson’s disease. Weight loss may initially be a positive and popular disease related feature. However, as patients dip below their ideal body weight, this may possibly impact quality of life and other outcomes (Akbar, 2015). In this month’s What’s Hot in PD?, we will discuss a recent article on weight loss in Parkinson’s disease.

In this month’s issue of Neurology, the Parkinsonism Incidence in North-East Scotland (PINE) focused on weight loss (Cumming 2017). The study examined newly diagnosed patients and followed them, as well as matched controls, longitudinally for about five years. Of 515 participants and 240 controls, 187 had Parkinson’s disease and 88 had atypical parkinsonism (diagnoses such as Progressive Supranuclear Palsy, Multiple System Atrophy or Corticobasal Degeneration). In general, both Parkinson’s disease and atypical parkinsonism cases had lower body weights and lost weight faster when compared to controls. Atypical parkinsonism cases had the lowest body weights and most rapid weight loss. Older age was the factor that was most associated with weight loss; however, in cases with weight loss in the first year, there was a strong association with dependency on a caregiver, dementia and death (Okun, 2017).

The PINE study, along with other recent publications on weight loss in Parkinson’s disease and atypical parkinsonism, would suggest that we need to become more aware of this issue. Your doctor should track your weight at each visit and consider the possibility of intervening with dietary changes to address any weight loss. Whether any intervention could potentially affect outcomes remains unknown and it will be important for researchers to pursue a prospective randomized study. Finally, if you have one of the atypical forms of parkinsonism you may need to be more aggressive in addressing weight loss.

Selected References

  1. Cumming K, Macleod AD, Myint PK, Counsell CE. Early weight loss in parkinsonism predicts poor outcomes: Evidence from an incident cohort study. Neurology. 2017 Nov 28;89(22):2254-2261. doi: 10.1212/WNL.0000000000004691. Epub 2017 Oct 27. PubMed PMID: 29079685.
  2. Mun JK, Youn J, Cho JW, Oh ES, Kim JS, Park S, Jang W, Park JS, Koh SB, Lee JH, Park HK, Kim HJ, Jeon BS, Shin HW, Choi SA, Kim SJ, Choi SM, Park JY, Kim JY, Chung SJ, Lee CS, Ahn TB, Kim WC, Kim HS, Cheon SM, Kim JW, Kim HT, Lee JY, Kim JS, Kim EJ, Kim JM, Lee KS, Kim JS, Kim MJ, Baik JS, Park KJ, Kim HJ, Park MY, Kang JH, Song SK, Kim YD, Yun JY, Lee HW, Song IU, Sohn YH, Lee PH, Park JH, Oh HG, Park KW, Kwon DY. Weight Change Is a Characteristic Non-Motor Symptom in Drug-Naïve Parkinson's Disease Patients with Non-Tremor Dominant Subtype: A Nation-Wide Observational Study. PLoS One. 2016 Sep 13;11(9):e0162254. doi: 10.1371/journal.pone.0162254. eCollection 2016. PubMed PMID: 27622838; PubMed Central PMCID: PMC5021347.
  3. Akbar U, He Y, Dai Y, Hack N, Malaty I, McFarland NR, Hess C, Schmidt P, Wu S, Okun MS. Weight loss and impact on quality of life in Parkinson's disease. PLoS One. 2015 May 4;10(5):e0124541. doi: 10.1371/journal.pone.0124541. eCollection 2015. PubMed PMID: 25938478; PubMed Central PMCID: PMC4418600.
  4. Okun MS. Poor Outcome Associated with Weight Loss in Parkinson’s Disease and Parkinsonism. New England Journal of Medicine Journal Watch Neurology, 2017.
Michael S. Okun, National Medical Advisor

You can find out more about our National Medical Director Dr. Michael S. Okun by visiting the Center of Excellence University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life.

Caregiver Corner

Being Your Own Caregiver

Couple laughing in the kitchen

"You know I don’t eat in public,” Pat Merryman said to Wanda Patton, who are both heavily involved in the Columbus, OH, Parkinson’s disease (PD) community. They know people in every exercise class and attend every educational program. Pat keeps the Parkinson’s Foundation Ohio program manager’s business card with her to hand them out at every event she attends. 

Pat and Wanda have different personalities, but they have many things in common — including Parkinson’s. Neither have a caregiver and both live alone. They’ve always been outspoken about having more resources and staying independent as your own caregiver, which is why they were excited to hear about the Parkinson’s Foundation Expert Briefings webinar where occupational therapist Erin Foster will address home safety and management for people with Parkinson’s who live alone.

Annie Caregiver

Support and Socialization

“Support systems are critical for everyone with Parkinson’s, but especially for people who don’t have a designated caregiver,” Pat said. Looking for the support of their local Parkinson’s community, they both attend support groups and exercise classes. They have tried to establish a “circle of support” through their doctors, therapists and PD community (like the Foundation). 

While they wish there was more organic community support on a regular basis, they are comfortable and confident with the level of support they have now. They actively seek additional support and get it through their local Parkinson’s Foundation chapter, which puts together educational programming and fundraisers for the PD community.

“Support from the Parkinson’s community is great, but it can’t end there,” said Pat. She makes sure that she is active in her community, attending all sorts of programs that don’t always relate to Parkinson’s.

Socialization is a key ingredient in Pat and Wanda’s recipe for managing their Parkinson’s. “Socialization, then exercise, then medication,” said Pat, quoting David Zidd, co-founder of the Parkinson’s Exercise Program Delay the Disease.

Without socializing, Pat and Wanda would have never met other people in their Parkinson’s circle of support, like the caregiver for a woman in their PD community they lovingly call their “PD Daddy.” He drives many of them around town from one group to another, giving them extra time together in the car. This time together has provided them with extra support, making a huge impact in their lives.

Wanda is not afraid to ask for help. “I couldn’t bend to clean for months before or after my surgery,” she said. She had a group of volunteers clean her house after her surgery. She’s still not sure where the volunteers came from, but she knows Pat put her in touch with them.

Challenges of Living Alone with PD

Eventually, Wanda and Pat addressed the things they are missing and wish they had along with the things they fear. Wanda had a tough time after surgery. Although she brought her Aware in Care kit to rehabilitation with her, she had trouble getting her PD medications on time. Once she returned home, a friend traveled from Florida to stay with her for two weeks because she had difficulty moving.

Wanda continues to experience the continuous PD challenge of falling due to dizziness and lightheadedness when home alone. “Some of the falls didn’t hurt anything, except my feelings,” she said, but one time she hit her head and had to crawl to bed after regaining consciousness. Wanda helped her own mother as she struggled with falls, but she doesn’t have someone living with her to help her stay safe and talk her through what to do.

“PD is a complex condition and daily self-management, preparing for the future and making treatment-related decisions is a lot for one person to consider and keep track of.”

- Erin Foster, occupational therapist

Dr. Foster references challenges for single people with Parkinson’s, including what she calls the big things: falls and potential medical emergencies, as well as the little things: day-to-day tasks like changing light bulbs and preparing meals. She acknowledges that people with PD living without a primary caregiver who wish to remain independent will require extra planning, organization and a willingness to reach out for support as needed.

“There are two sides to every story,” Pat said, reflecting on the fact that she and Wanda can’t lean on a caregiver. But this keeps Pat motivated. She doesn’t have someone to remind her to exercise and Wanda knows that if she doesn’t find the motivation nothing will happen. “We only have ourselves, so we can’t be lazy. There is no one to take care of us otherwise,” Wanda said.

Learn more about Living Alone with Parkinson's

Tips for Daily Living

12 Ways to #SummerOn with Parkinson's

Couple looking out on to the water

With Parkinson’s disease (PD), we know how challenging it can be to manage “off” times. That’s why it is important to seek out more of what helps us feel “on.” Let’s dedicate this summer to trying new things, being grateful to those around us, creating heartfelt memories and doing what makes us happy.

This summer, we challenge you to try every item on this list to find new activities. Join us on Facebook to follow our month-long summer challenge and #SummerOn with the Parkinson’s Foundation. This article is part one of a two-part series. Check out part two of Tips to #SummerOn here.

1. Learn something new and share it with your friends and family.

It is essential to learn as much as you can about Parkinson’s so you can be your own best advocate. Our PD Library is a wonderful way to start or build on your knowledge. Visit Parkinson.org/library for an extensive and free collection of books, fact sheets, videos, podcasts, and more.

2. Make a list of the things you are good at.

Practice being grateful. Recall or write down things that you do well. A little self-love can go a long way in improving our mood. Learn more about Parkinson’s and mood by reading Mood: A Mind Guide to Parkinson’s Disease.

3. Give someone a hug.

Keep socially active and get involved. People who maintain friendships are less likely to experience depression, loneliness, low self-esteem and problems with eating and sleeping. Embrace a loved one today or send a virtual hug.

4. Enjoy Nature.

Spend some time outdoors. It may not even feel like a workout to the nature lover. Research has shown that walking in nature can help with depression and anxiety, which are two common non-motor symptoms for people living with Parkinson’s disease.

5. Try our guided meditation video.

Mindfulness is a practice that can be used as both a coping and prevention strategy. Whether you have two minutes or 20, mindfulness meditation can help you reduce your stress and pain. Check out our meditation video, guided by our Helpline specialist Paula Wiener, MSW, LCSW.

6. Listen to your favorite song.

People living with Parkinson’s may find moving around does not come as naturally as it once did. Music can help! Music can boost our productivity during an exercise class and help counter a freezing episode by providing a rhythmic beat to step to. Research also suggests that music therapy can reduce bradykinesia. Listen to some of your favorite tunes for some motivation.

7. Try a new recipe or diet.

There is evidence that the Mediterranean diet may help reduce blood pressure and cardiovascular disease. Emphasizing plant-based staples and healthy fats, while minimizing meat, can improve health. 

8. Become a Parkinson’s Champion.

When we donate to a cause we care about, we activate parts of the brain associated with pleasure, social connection and trust. Support our mission to make life better for people with Parkinson's by hosting a do-it-yourself fundraiser as a Parkinson’s Champion. Need a summer theme? Try an ice cream social, movie night, luau or clam bake.   

9. Register for your local Moving Day.

Moving Day is more than just a walk. It is a movement for change — increasing awareness, funding and understanding of a disease that affects so many of our family and friends. With 39 walks taking place around the country in 2018, we encourage you to register for a Moving Day event near you!

10. Write your My PD Story.

My PD Stories are inspirational and provide readers with hope. What can you share with others that will help them keep moving forward? You can write about any aspect of Parkinson’s that you feel comfortable sharing. Submit your My PD Story today and tell us what challenges you have overcome and what keeps you happy, healthy and hopeful.

11. Try a new exercise.

Did you know that exercise can change the brain and have a positive impact on Parkinson’s symptoms? The Parkinson’s Outcomes Project found that people with PD who engaged in at least 2.5 hours of exercise a week had a better quality of life than those who didn't exercise at all or started exercising later. Learn more about exercise and its effect on our brain.

12. Listen to a new podcast.

Our podcast "Substantial Matters: Life and Science of Parkinson's," is available for listeners to subscribe, stream or download. Every episode features a PD expert discussing a range of Parkinson’s topics, including research, medication, exercise, nutrition and more. Listen or subscribe now.

Want even more tips and great resources at your fingertips? Check out part 2 here and follow us on Facebook for year-round tips, resources and information!

Raise Awareness

10 Interesting Facts About Parkinson's Disease

couple hugging

At the Parkinson’s Foundation, one of our goals is to raise Parkinson’s disease (PD) awareness and how the Foundation supports those living with the disease and their loved ones. If you are familiar with Parkinson’s you probably know most of the items on this list, but we encourage you to share this article with someone who may not be familiar.

1. The cause is unknown and there is no cure.

What causes Parkinson’s remains largely unknown. Genetics cause about 10 to 15 percent of all Parkinson's. The other 85 to 90 percent of cases are classified as sporadic (or occasional). Although there is no cure, treatment options vary and include medications and surgery.

→ Keep reading: What is Parkinson’s

2. People with Parkinson’s can have a good quality life.

There is no one-size-fits-all treatment approach when it comes to PD. While medication is the most common treatment, surgical therapy and lifestyle modifications, like rest and exercise, help manage the disease. Shop around until you find what works best. Find your ideal support group, therapist, exercise class and complementary therapy.

→ Keep reading: Find resources in your area

3. No two people have the same exact symptoms.

The progression of symptoms is often a bit different from one person to another due to the diversity of the disease. People with PD may experience: tremor (mainly at rest); slowness of movements (bradykinesia); limb rigidity; gait and balance problems.

→ Keep reading: Managing Parkinson’s

4. Non-movement symptoms can be more troublesome than motor symptoms.

In addition to movement symptoms, from tremor to balance issues, most people with PD also develop non-movement symptoms that many consider more disabling. They can include:

→ Keep reading: Non-Movement Symptoms

5. Small Handwriting and loss of smell are early signs of Parkinson’s.

A change in handwriting, specifically handwriting that’s gotten smaller over time or crowded, are an early indicator of PD. Another common early sign is the loss of smell of foods like bananas, dill pickles and licorice.

→ Keep reading: 10 Early Signs of Parkinson’s Disease

6. Exercise helps manage Parkinson’s symptoms.

For people with Parkinson’s, exercise is more than healthy — it is a vital component to maintaining balance, mobility and activities of daily living. Exercise and physical activity can improve many PD symptoms. The Parkinson’s Outcomes Project shows that people with PD who start exercising earlier and a minimum of 2.5 hours a week experience a slowed decline in quality of life compared to those who start later. Tai chi, yoga, Pilates, dance, weight training, non-contact boxing and more all have positive effects on PD symptoms. Watch our Fitness Friday videos.

→ Keep reading: Exercise

7. Parkinson’s should be treated through a team approach.

The Parkinson’s Foundation recommends people diagnosed with PD seek out a movement disorders specialist. These specialists are more likely to include other healthcare professionals who can help tackle day-to-day PD challenges in a care team, such as physical therapists, occupational therapists, speech therapists or nutritionists.

→ Keep reading: Importance of Expert Care

8. People with Parkinson’s are not always angry or sad.

Many people with Parkinson’s experience facial masking — reduced facial expression. Often, people with PD look serious, depressed or mad, but many times it’s just that PD is causing muscles in the face to be stiff or take a long time to move.

→ Keep reading: Facial Masking

9. Designated Centers treat Parkinson’s. 

The Parkinson's Foundation leads the development of new treatments through its Centers of Excellence network, comprised of 47 international leading medical centers, staffed by renowned PD specialists. These centers deliver care to more than 193,000 people with Parkinson’s. Participating centers also play a key role in the Foundation’s Parkinson’s Outcomes Projectthe largest clinical study of Parkinson’s ever conducted.

→ Keep reading: Centers of Excellence

10. The Parkinson’s community is strong. 

The Parkinson’s Foundation is here for our global Parkinson’s community — that includes family members and caregivers. The Foundation hosts Moving Day walks across the nation and also provides additional ways to get involved — donatevolunteerhost a fundraiser, join PD Conversations or advocate.

→ Keep reading: Get Involved

We’re here for you. Get answers to your Parkinson’s questions when you contact our Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

Tips for Daily Living

Even More Ways to #SummerOn with Parkinson's

Couple sitting on a bus smiling out the window

With Parkinson’s disease (PD), we know how challenging it can be to manage “off” times. That’s why it is important to seek out more of what helps us feel “on.” Let’s dedicate this summer to trying new things, being grateful to those around us, creating heartfelt memories and doing what makes us happy. This summer, we challenge you to try every item on this list to find new activities. Join us on Facebook to follow our month-long summer challenge and #SummerOn with the Parkinson’s Foundation.

1. Catch up with an old friend.

Staying social helps retain cognitive sharpness. Make this the summer you meet new folks at a support group or reach out to that friend you’ve been meaning to catch up with. Our community is active, supportive and always growing! Search for upcoming events in your area.

 2. Subscribe to our eNewsletter.

Get the latest news on Parkinson’s treatments, research and other updates. Expand your knowledge about PD. Sign up now.

3. Watch or participate in one of our webinars.

Whether you are living with Parkinson's, are a caregiver or a healthcare professional, we have a webinar for you. Learn more about PD symptoms, progression, treatments and management during our live webinars or watch one of more than 40 recorded past webinars at your convenience. Register for our Expert Briefings.

4. Remember old jokes or look up some new ones.

Keeping a sense of humor can help beat anxiety. Watch a funny video or read something that makes you laugh every day. Share a joke with a friend or the cashier at the grocery store.

5. Eat your favorite meal.

Have you or your loved one experienced weight loss since being diagnosed with Parkinson’s? Maintaining a healthy weight is key to living well. Enjoy some of your favorite foods today, but always in moderation. Learn more about weight loss and PD.

6. Write down a meaningful quote.

Start your day with a positive message to boost your mood and enhance thinking! Write down your favorite quote and place it somewhere you can see every day. The Parkinson’s Outcomes Project found that mood, depression and anxiety have the greatest impact on health for people with PD — even more than motor symptoms. Learn more about mood and other ways to elevate yours with our fact sheet.

7. Plan a trip.

Summer means vacation time — a chance to reset and renew. Traveling with Parkinson’s means extra challenges to consider before hitting the road.

8. Tap into your creative side.

Art activates our imagination, creativity and memory. The combination of colors and figures stimulate your brain by improving memory and concentration. Learn how Leo Narcisse Robichaud uses art as his therapy and bring out your creative side today.

9. Invite a friend to coffee.

Staying social has been proven to help retain cognitive sharpness. Surround yourself with people who make you laugh and smile or make new friends at Parkinson’s groups. Learn more about how to fight isolation.

10. Get better sleep.

Sleeping is essential for our body and our mind to function properly. Unfortunately, problems with sleep and alertness are common in Parkinson’s. Read our online sleep book with tips and information that will help you rest.

11. Start a daily journal.

Practice your handwriting by keeping a journal. Small, cramped handwriting (called micrographia) is a characteristic of Parkinson’s. There are strategies that can make writing more comfortable for you, including writing a few sentences every day in a journal. Learn some techniques for managing micrographia now.

12. Watch your favorite movie.

Make time for activities you can enjoy with your loved one outside of care. Catch a new flick or rent a classic.

13. Treat yourself.

The benefits of massage therapy are recognized by many people with Parkinson’s and caregivers alike. Some of its benefits include improvement in sleep, reduction in rigidity, tremor and anxiety.

Want even more tips and great resources at your fingertips? Join us on Facebook for year-round tips, PD-related resources and information. 

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