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.

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.

"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.

“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. 

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!

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:

• Cognitive changes: problems with attention, planning, language or memory
• Mood disorders, such as depression, anxiety, apathy and irritability
• Fatigue
• Hallucinations and delusions
• Lightheadedness (orthostatic hypotension)
• Sexual problems, such as erectile dysfunction
• Sleep disorders, such as insomnia

→ 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 Project, the 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 — donate, volunteer, host 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.

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. 

As a child growing up in the Bronx, Evan saw his grandfather Jack’s hand shake. “We knew he had Parkinson’s disease (PD), but we never really spoke about it,” Evan said. Many years later, Evan’s father — Jack’s son — Keith, would inspire Evan’s Parkinson’s Champions campaign: Push Ups 4 Parkinson’s. 

Fast forward to 2002, Evan and his wife Rachel were on speaker phone with his father, when Evan’s mom said, “Dad has Parkinson’s disease.” What are his symptoms? What happens next? And the family’s PD journey began.

Evan’s parents had a strong marriage. They were ready to take on this challenge together and push through with grace and a positive attitude. At first, symptoms were minimal — no shaking or tremors. Keith dragged his feet, shuffled and him arm stopped swinging when walking. Next, his handwriting changed.

Parkinson’s is a challenging disease because no two people have the same symptoms or progression. In Keith’s case, the family wouldn’t notice new PD symptoms for years. Keith began to experience depression, but he pushed through.

Evan’s parents became involved with Parkinson’s support groups. “Dad led their chapter and enjoyed bringing value to the community,” Evan said. “He was a stand-out leader in business and in his community, and he was becoming noticed.”

But as Keith’s PD worsened, he began to withdraw from his community. Years passed; he was no longer able to drive, and medicines increased as symptoms did. Keith’s mom became his primary caregiver and had to keep pushing, while Evan learned the term “sandwich generation” from experience — caring for multiple generations simultaneously.

Eventually, the family had to make the tough decision to move Keith to a home. “Mom was dealing with everything,” Evan said. “I don’t know how she held it together, but she did. However, she wasn’t taking care of herself. Caregivers get too little credit.”

Evan saw his parents’ ability to push through their situation. “Their strength, hope, and selfless attitude inspired me, and I felt the need to inspire them back somehow. But how?” Evan said. Eventually, Evan came up with the idea of challenging himself to 100 push-ups every day for the rest of his life. He posted his progress on social media daily. His friends and family supported his effort, and soon it caught on around the world.

Even also noticed that his daily commitment was helping him cope with the stress, stay focused, get stronger and channel this into something positive. As Evan’s parents kept on pushing, so did he.

Unfortunately, Keith’s Parkinson’s journey ended at the young age of 74, on June 23, 2017. Evan knew they needed to do more to help others in the PD community. With quick math from his son Jonah, they realized that if Evan continued this push-up movement every day until that same age of 74, the same age his father passed away, he would reach one million push-ups.

“If I can do one million push-ups, and I will, then we should be able to get the rest of the world to do 100 million! And while we’re at it, let’s raise 100 million dollars,” Evan said. This idea grew into the worldwide Pushups 4 Parkinson’s challenge, or 10.10.10, where anyone can get involved by doing 10 pushups, donating $10, and telling 10 friends!

“I wanted to create a catchy way to spread awareness, while challenging, engaging and inspiring people to improve their health and have some fun,” Evan said. He formed an executive board to manage the new 501(c)3 nonprofit that would launch the official 10.10.10 Pushups 4 Parkinson’s challenge and take part in the Parkinson’s Foundation Champions fundraising program.

“We must take action right now and start moving for good health,” Evan said. “Push-ups can help!” Right now, 10.10.10 is hosting a six-month challenge to raise money to end Parkinson’s. At the end of the challenge, Evan will donate the money raised in the campaign to the Parkinson’s Foundation and other organizations to speed up research for a cure, raise awareness, improve quality of life and ensure expert care.

Evan challenges everyone to make a difference and take part in the 10.10.10 challenge in four easy steps:

1. DO 10 push-ups and share on social media (use video or photo)
2. TAG 10 / Challenge 10 friends to do the same. Use hashtags: #My101010  #Move4PD
3. GIVE $10 today @ My101010.org
4. Include these instructions in your post

Once you complete the challenge, commit to daily push-ups and log them on www.PushUps4Parkinsons.org. Keep pushing-up!

Have your own fundraising idea? To start a Parkinson’s Champion fundraiser, visit Parkinson.org/Champions.

Parkinson’s disease (PD) can change the way a person walks. Movement Symptoms like stiff muscles, rigidity and slow movement make it harder to take normal steps. In fact, short, shuffling steps are a common sign of PD, as is freezing, the feeling that your feet are stuck to the floor, for people with mid-stage to advanced PD.

On their own, these changes are distressing enough. But add the fact that Parkinson’s affects balance and they also become dangerous, putting people with PD at risk of falling. The good news is that with exercise and physical therapy, people with PD can improve their balance. What can you do to minimize freezing and avoid falls? Read on to find out.

The following article is based on the latest research and a Parkinson’s Foundation Expert Briefings about Parkinson’s-related freezing, balance and falls hosted by Fay B. Horak, PhD, PT, Professor of Neurology at the Oregon Health & Science University, a Parkinson’s Foundation Center of Excellence.

Freezing of Gait

Freezing happens when your feet stop moving forward while you are walking, even though you try to keep going. It can be brief and happen erratically. Many people experience freezing as they approach a narrow space, like an elevator door. Usually the legs do not stop moving, instead they tremble or the knees move. This happens because during freezing a person rapidly shifts their weight from foot to foot to take a step.

Trouble With Turning

For people who experience freezing, turning in place is difficult. In fact, it is more likely to set off freezing than walking straight. Turning requires quick adjustments to balance and moving your head, upper body and lower body in sequence. If you have rigidity, this is especially difficult to do.

“In my laboratory we have used wearable sensors to measure freezing and turning in people with PD.” Dr. Horak said. “In one study, we put a camera on each participant’s belt and aimed it at their feet, so we could record and count how often they turned during the day. We were surprised to see that people turn more than 100 times an hour, or up to 1,000 times a day. In fact, we all turn more than walk straight.”

Dr. Horak and her team found that people with PD turn significantly more slowly than people without PD, and they take as many as four or five steps to make a turn. In addition, people with more advanced PD avoided making turns. When they did, they made them slower.

Ultimately, Dr. Horak’s team discovered that a person’s risk of falling can be predicted based on the way they made turns. People who made slower turns and took more steps were more likely to fall. Freezing, turning, shortened steps and falls all are related to balance.

Balance and the Brain

Difficulties with balance and walking are linked to the brain changes that take place with PD. For people who don’t have PD, balance is automatic, a reflex. But Parkinson’s affects the basal ganglia (a part of the brain essential to balance). To compensate, the brain assigns another brain area — an area used for thinking — to take over. The thinking part of the brain, mainly the frontal cortex, can’t control balance automatically. The result: for many people with PD, balance becomes less automatic.

This means that when people experience freezing and fall, they can’t adjust their balance automatically. Taking small steps to try and regain balance can make things worse, because it involves shifting weight with each step. The brain changes from PD inhibit their ability to take a big step to catch their balance and avoid a fall. For some, the drug levodopa (Sinemet) can help prevent freezing, but does not improve balance.

A person whose balance is less automatic must pay more attention while walking. For everyone, walking slows down when we’re talking and thinking slows down when we’re walking. This is called the “dual-task cost” and it’s higher in people with PD. That tells us that people with PD are using more attention and more cognitive control for balance and gait.

Dr. Horak has used brain-imaging techniques in her lab to show how balance signals are rewired in the brains of people with PD, compared to scans of people without PD. The ideal situation is for a person with PD to walk with no distractions. Additionally, people with PD can find that using a walker may require additional attention. To date, deep brain stimulation (DBS) has not been shown to help freezing.

The Route to Better Walking

The good news for people with PD is that with exercise and physical therapy it is possible to cope better with freezing, turn and walk more normally and improve balance. Through practice and sessions, a physical therapist can help people with PD avoid tripping by helping them learn to take larger steps. Additionally, joining an exercise class tailored to people with PD can help. If you take levodopa, be sure to exercise while it is working — the drug helps your body learn and remember motor skills.

Tricks that can help overcome freezing:

• Walk to a regular beat to help prevent freezing. Try a metronome.
• Take large, voluntary marching steps.
• Step over an imaginary line or laser pointer.
• Work with a therapist to find the solution that works best for you.

People respond differently to audio, visual or sensory cues. Dr. Horak and her team are testing a device that provides sensory feedback — vibration on the foot — to stimulate automatic stepping.

Another consideration for people who have freezing is anxiety, a common PD symptom. People who have anxiety experience freezing more often. It is a vicious circle — being anxious about freezing can trigger it. Treating anxiety may help freezing.

To Prevent Falls, Exercise

Exercise is the only intervention that significantly reduces a person’s risk of falling, among older people without PD as well as people with Parkinson’s. Research is beginning to show how exercise changes the brain for the better and can help people with PD gain back some of their automatic balance reflex.

In a study, Dr. Horak and her team asked participants with PD to stand on a quickly moving treadmill, until they began walking. Participants initially took too-small steps, but with one hour of practicing, they improved, taking bigger steps to stay balanced while walking.

Many kinds of exercise can improve a person’s balance. Consider trying:

• Tai Chi: a moving meditation where movements involve shifting the body’s center of mass back and forth over the feet. Studies found fewer falls among people with PD who practiced Tai Chi three times a week.
• Dance: to dance tango, a person has to walk backward and sideways, take big steps and both follow and lead — good ways for people with PD to practice balance control.
• Boxing: the rapid arm movements provide good balance training.
• Agility boot camp: completing different tasks in a series of stations can improve balance.

What is the best exercise? The one you actually do. Choose exercise that makes you sweat and do it three times a week. As you get better, make it more challenging. According to the Parkinson’s Foundation Parkinson’s Outcomes Project, increasing physical activity to at least 2.5 hours a week can slow decline in quality of life.

Conclusion

Changes in the brain that take place with PD affect a person’s balance. This, combined with difficulty walking because of stiffness, freezing or shortened steps, puts people with PD at risk of falling. No medications are effective for these issues. Only exercise has been proven to help. Find ways to exercise that you enjoy, get help if you need it and walk with more confidence.

Learn More

• Parkinson.org/Freezing 
• Parkinson’s: Substantial Matters podcast on freezing
• Call our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find a Parkinson’s-tailored exercise class or physical therapist in your area. 

Who would have ever thought I would be writing about boxing? I'm that person who hides behind her coat in the movie theater during fight scenes! Luckily, boxing for Parkinson's disease (PD) is non-contact and a fight worth a good punch. In recent years, boxing programs for people with PD have been popping up all over the United States, many affiliated with Rock Steady Boxing in Indianapolis, IN. This onset of new exercise programs has brought with it many questions about the safety and effectiveness of boxing for PD.

We are just beginning to understand more about boxing for PD. What I can tell you to date is that participants in our studies have safely completed training and have been able to adhere to the program. And boxing training, like what is done at Rock Steady Boxing, does appear to be effective. Participation in intense boxing training over time is associated with better mobility and better perception of quality of life. This is all very promising, but we still have a lot of work to do to better understand the effects of boxing and how it compares to other types of exercise.

Let's consider some hard-hitting evidence from an ESPN poll (okay, maybe not so hard-hitting). A panel of experts including scientists, athletes and sports journalists decided that boxing is THE most demanding sport. They reported that collectively boxers need more endurance, strength, power, agility, flexibility and speed than athletes from any other sport. Does this mean that boxing is the best exercise for anyone, including those with Parkinson disease? There actually may not be a right answer to that question. The type of exercise one chooses needs to fit their unique interests and ability. So, why then are so many people with PD choosing to box? Boxing makes for a novel and intriguing exercise choice for many adults with PD. It's fun, dynamic and different. And let's face it, who doesn't want to punch Parkinson's right in the kisser from time to time?

Many boxers have told me that they enjoy the camaraderie with the others in the program and that motivates them to keep going, class after class. That might just be the most critical point here! It may not matter if you box, walk, cycle, dance, or do Tai Chi. What matters is that you find an exercise program that you enjoy and stick with it! And better yet, find others who want to exercise with you and motivate each other to keep going. Just like daily medications, a regular dose of exercise, no matter the type, may be a key ingredient to maintaining health and function over the long haul for those with PD.

It has been exciting to see so many communities develop boxing programs for people with PD. As a physical therapist, I am thankful that many people with PD now have an option for ongoing exercise in their communities. If you are considering boxing, it is important to remember to slowly build up your tolerance to the intensity of the training. Know your physical limits, seek guidance from the coaches and give it your best shot! But regardless of what type of exercise keeps you going back to the gym, by regularly exercising you are likely to give Parkinson's a good fight.

Stephanie Combs-Miller, PT, PhD, NCS, is a board-certified clinical specialist in neurologic physical therapy, educator and researcher at University of Indianapolis. Dr. Combs-Miller has collaborated with Rock Steady Boxing for the past 10 years to build the community-based partnership and to conduct research on the effects of boxing training for people with Parkinson disease.  

As winter melts into spring, you may be realizing that your exercise routine suffered through the cold season. You probably already know that exercise is a vital component to maintaining balance, mobility and daily living activities for people with Parkinson’s disease (PD). A Parkinson’s Outcomes Project study found that 2.5 hours of weekly exercise can improve your quality of life and help manage your Parkinson’s symptoms.

Now is a great time to kick back into gear, but make sure you do so safely. Below are some tips for easing into a new exercise routine:

Talk to Your Doctor

• Your physician knows your condition and can refer you to a physical therapist who can give you specific exercises based on your health and symptoms.
• Did you know that people with Parkinson’s are at a higher risk for osteoporosis (a medical condition that makes bones weak and brittle)? Research has found that people with PD have lower bone mineral density (BMD) than their peers. Vitamin D shortage increases your risk. Ask your doctor about a BMD test before you begin a new workout plan and get outside.

Start Slow

• Try returning to a previous routine, if you had one, at a lower intensity.
• If you’re just getting started, try working fitness into your daily schedule. For example, walk to the mailbox. Next, try parking far from the entrance when running errands. When that’s easy walk around your block. Increase your distance as you go, trying new walking trails or try joining a walking group.
• Work in an extended warm up and cool down time to protect yourself from injury.
• Each month, assess your progress and see if you’re ready to take it to the next level!

Safety First

• Wear comfortable clothing and shoes that provide good support.
• Make sure you have the proper safety equipment for your activity — like a helmet if you are cycling or walking sticks.
• Do NOT continue an exercise that causes pain. All movement should be done in a controlled manner to prevent injury.
• If you push too hard one day, take a break from your exercise routine the following day so you can heal and restore your energy.

Don’t Do It Alone

• Having someone there if you need an extra hand is always a good idea, but is vital if you’re just getting started again and learning your new starting point.
• While exercise is vital for people with PD, it’s important for everyone! Ask your caregiver if they would like to try a new class together. Ask a friend or neighbor to be your workout buddy. You’ll be more likely to stick to your plan if you have someone else working out with you.
• Connect with a local gym or a Parkinson’s-tailored exercise class, to double up on benefits by adding a social component to the physical one! Contact your local Parkinson's Foundation chapter or call our Helpline at 1-800-4PD-INFO (473-4636) to find a Parkinson’s exercise class near you.

Never been interested in fitness? Here are great activities that don’t feel like exercise:

• Join us at Moving Day, A Walk for Parkinson’s! Taking place in 39 cities nationwide, Moving Day celebrates the importance of exercise for people with Parkinson’s in a fun, family-friendly way.
• Hike with friends. With great spring weather, it may not even feel like a workout to the nature lover or socialite.
• Play with your children or grandchildren outdoors. Make memories and break a sweat! Trying to keep up with them on the playground or in the backyard should do the trick.
• Spruce up your yard. Since gardening combines stretching, lifting, pushing and pulling you get a functional exercise. Don’t have a yard? Join your local gardening club.
• Try a new dance, yoga, or Tai Chi class — all three benefit balance and mobility. You may even have a Parkinson’s-specific class near you. Want to try it at home? Try different videos on YouTube until you find one you enjoy.
• Play Nintendo Wii Sports with a friend or grandchild. The Wii gaming system gets you up and moving with games like golf, bowling and tennis. Your local senior center may even have a Wii available for members if you don’t have access to one.

Additional Exercise Resources:

• Fitness Counts: This book contains descriptions and explanations of specific exercises that can help you maintain flexibility, strength and aerobic conditioning. 
• Toll-free Helpline: Our 1-800-4PD-INFO (473-4636) Helpline is staffed by nurses and social workers who can answer your questions about Parkinson's and help you find local exercise and wellness classes.

After 41 years of marriage, four children, seven grandchildren and a Parkinson’s disease (PD) diagnosis, Hector and Mary Padilla still say they are in their honeymoon stage.

“Throughout my entire career, every time I traveled for work, Mary took care of everything,” said Hector. “I always appreciated that someone so beautiful, talented and smart, devoted all her efforts to make me happy.”

In 2015, Mary was diagnosed with Parkinson’s. Hector was familiar with the disease, as his uncle lived with it. “When Mary was diagnosed I was scared,” he said. “She went from being a life-long multi-tasker and a powerful woman, to doubting herself.”

Hector knew it was his chance to take care of Mary. “When she needs me I cannot say no,” he said.

Together, they began learning how to manage Parkinson’s. Their first step was to seek the best Parkinson’s care, so Mary began treatment at the University of Miami, a Parkinson’s Foundation Center of Excellence. In three years, Hector has never missed an appointment. “I ask questions, describe new symptoms and talk through everything, even though Mary doesn’t always want me to,” Hector said.

From day one, the couple complemented their care with Parkinson’s Foundation resources, such as Parkinson.org, to read about symptoms, research and the latest treatment approaches.

“We fight this together,” Hector said. “We started exercising hard, eating better, learning more about Parkinson’s and trying to deal with it objectively.”

Mary attends PD boxing classes at Memorial Regional Hospital, a Parkinson’s Foundation community grant recipient. Hector also attends, standing in the back of the room, mimicking Mary’s hook-uppercut boxing combinations. “I’m here for encouragement, which is important for anyone fighting a disease,” he said.

It’s through classes like boxing that Mary and Hector built their PD community. Together, they also attend Moving Day, A Walk for Parkinson’s, to raise Parkinson’s awareness.

“Hector’s unending love and source of strength in my life is what has allowed me to fight. My journey with Parkinson’s is manageable because of his constant support and encouragement to make me feel normal again.”

Hector’s caregiver advice is simple: “If you care or love someone, you’ll do whatever it takes to support them. I feel great doing things for my wife. She’s the love of my life. How can I walk away from that?”

Visit Parkinson.org/Caregivers for information