A new study finds that traumatic brain injury from a blow to the head, with loss of consciousness, may increase a person’s risk of developing Parkinson’s disease (PD) later in life. The results appear in the July 11 online edition of JAMA Neurology. The researchers did not find an association between head injury and Alzheimer's disease.

The neurological effects of head injuries are much in the news, with worry over repeated, relatively mild, concussions among athletes, and with the recent death of boxing great Muhammad Ali, who lived with Parkinson's disease. This new study, however, focused narrowly on the long-term effects of even one instance of trauma to the head — especially injuries involving loss of consciousness — among older people more representative of the general population.

Researchers led by Paul K. Crane, M.D., M.P.H., at the University of Washington in Seattle, analyzed self-reported data, collected between 1994 and 2014, from 7,130 people who had enrolled in other studies that gathered data on memory, cognition and aging. On average, study participants were 80 years old at the time of this report, and did not have dementia, PD, or Alzheimer’s disease when they enrolled in the original studies. Forty percent were men. Brain tissue was examined on autopsy for 1,589 participants, to search for signs of PD and Alzheimer’s disease.

Results

• Eight hundred sixty-five study participants reported having had a traumatic brain injury with loss of consciousness at some time in their lives.
• During the time study participants’ health was followed, 117 new cases of PD were diagnosed among the total of 7,130 participants.
• A past traumatic brain injury with loss of consciousness longer than an hour was associated with three and a half times increased risk of developing PD.
• History of traumatic brain injury was also associated with the accumulation of Lewy bodies in brain cells, the toxic clumps of alpha-synuclein protein that are the hallmark of PD.
• Traumatic brain injury was not associated with mild cognitive impairment (MCI)|, dementia, Alzheimer’s or brain changes associated with Alzheimer’s.
• Microinfarcts — microscopic strokes in the brain that may be a cause of dementia — were found more often in the brains of people who had traumatic brain injury that lost consciousness for more than one hour.

What Does It Mean?

Head injuries are common, even among non-athletes. Earlier studies have suggested that they might be related to developing Alzheimer’s.

But the new research found instead that just one traumatic brain injury with loss of consciousness of more than one hour was associated with Parkinson’s, and not Alzheimer’s. Although most people recover to normal functioning after a traumatic brain injury, this study suggests that the consequences from even a single head injury may take decades to develop.

The finding underscores the importance of preventing head injuries. It also suggests that additional research to understand the relationship between brain injury and Parkinson's, and why they are linked, might provide ideas for possible interventions for reducing risk of PD.

Beth Vernaleo Ph.D., Associate Director of Research Programs, PDF added, “While previous research has linked head injuries to neurodegenerative disease, this study illustrates a more specific finding — that a single blow to the head causing a loss of consciousness for more than an hour, even in one’s 20s, may lead to a three-fold increased risk of Parkinson’s decades later. Although the vast majority of people who experience head injury will not develop Parkinson’s, this study may provide clinicians with an additional diagnostic tool. For example, asking patients about history of head injury, amongst other symptoms and risk factors, may prove a valuable means of ascertaining the likelihood of a PD diagnosis.”

It is estimated that at least 50 percent of people living with Parkinson’s disease (PD) experience depression at some time during the course of their disease. The Parkinson’s Foundation Parkinson’s Outcomes Project found that taken together, mood, depression and anxiety have the greatest impact on health status, even more than the motor impairments commonly associated with the disease.

The sadness and hopelessness that accompanies depression make the challenges of living with PD even greater. The good news is that depression is a Parkinson’s symptom that can be controlled. No one chooses Parkinson’s, but they can choose how to cope with it.

Learn the skills that will empower you take control of your mood, worry less and find meaning in daily life. These skills are modeled on a non-drug therapy called cognitive behavioral therapy, which has been found to be helpful for Parkinson’s-related depression. To cope with depression, you can put these skills into action.

The following article is based on the latest research and a Parkinson’s Foundation Expert Briefings about depression, hosted by Roseanne D. Dobkin, PhD, from Rutgers, The State University of New Jersey, Robert Wood Johnson Medical School.

What Is Cognitive Behavioral Therapy?

Cognitive behavioral therapy (CBT) is a non-drug approach to developing the skills and actions that change patterns of thought and behavior related to depression.

Many factors can cause a person to become and stay depressed. How people think and interpret what goes on around them influences how they feel. As does behavior — what people do, or don’t do, in response to the stresses of life.

Depression can also have a biological cause. Brain changes that underlie PD may contribute to depression. However, it is important to remember that biology is not the only cause; thoughts and behaviors play a significant role. These three factors influence one another and intervening anywhere in the interconnected cycle can help treat depression.

Setting Goals to Change Behavior

The first step in positively changing behavior is to make plans and set goals for activities. Emotions can take control when feeling depressed or anxious. Instead, set clear goals and let these action plans guide you. Think strategically about increasing your involvement in meaningful activities — avoiding being busy for the sake of it. Goals should be small and realistic.

Focus on three areas when goal-setting:

1. Exercise. Identify a reasonable daily exercise goal, whether it’s Tai Chi or seated exercises. Ask for guidance from a physical or occupational therapist.
2. Socialize. Keep social goals small and do-able. Don’t jump to hosting a dinner party, instead try simple things like answering the phone or saying hello to a cashier.
3. Self-soothe. Take time every day for an activity that will lead to a positive emotion — something that just feels good. For instance, relax with a cup of hot tea, take a bath or listen to music.

While planning activities that guide your day, consider these questions:

• Are there things you used to love to do that fell off the radar with a PD diagnosis? Consider re-introducing those activities.
• If the daily activities you used to enjoy are no longer feasible, are there new activities that can replace them?
• Can you modify an activity that used to be enjoyable?

Dr. Dobkin’s friend Howard used CBT to gradually take control over and improve his mood. Howard was a career firefighter. Five years into his PD diagnosis, he was no longer physically able to fight fires. He became depressed and withdrawn, cutting off ties with his firefighter friends, who were like family to him.

During therapy, Dr. Dobkin and Howard tested different ways he could re-connect with his friends. First, he went to a chili dinner — and it wasn’t embarrassing like he thought it would be. Then, he began attending (not participating in) weekly training sessions and pool games at the firehouse. Gradually, Howard began to reconnect. He even helped with the fire department’s fundraising campaign. He realized that even though he couldn’t ride a fire truck, he could stay connected and contribute in many meaningful ways.

Tips to help you set daily goals:

• Make them small and meaningful.
• Choose activities that make you feel productive and satisfied.
• Plan around your physical limitations and “off” time.
• Pace yourself.
• Be flexible. If you can’t walk for 30 minutes, start with 15.
• Ask your doctor for referrals to physical, occupational and speech therapy.

Examine Negative Thoughts to Achieve Balance

When depressed or anxious, thoughts tend to include a lot of negative predictions — the typical response is to think that things will not go right. Most of the time, these predictions are not accurate. Yet, negative thoughts influence what people do and how they feel.

Cognitive behavioral therapy aims to recognize, analyze and test negative thoughts, evolving them into a more balanced, healthier mindset.

Try this cognitive behavioral therapy technique:

• Write down negative thoughts. For example, “my PD makes my friends uncomfortable.”
• Share the thought with a loved one and discuss it together.
• Recognize that it is your opinion and ask, “do others share my perception? Is there evidence against it? Is there an alternative explanation?”
• Revise your thought or prediction in a way that helps you cope with the challenges of PD more objectively.
• Fight the urge to think in worst-cases.

If possible, find a way to test your thinking. Perhaps you think you can’t eat at a restaurant because of your tremor. Find out. Make plans to test your thought. Increase your chances of success by taking your symptoms into account — for example, go when the restaurant is not crowded, order food you don’t need to cut or ask for a lid and straw for your drink.

Then see what happens. Identify what worked. Can you revise your original negative thought? Going forward, try using more balanced, accurate thoughts to guide how you feel and what you do during the day. Healthy thoughts will help you cope effectively with PD, whereas destructive ones derail your efforts.

Care Partners

Caregivers play an essential role in supporting people with PD who cope with depression. Research has shown people with Parkinson’s using CBT have more improvement in their depression, and for longer, when their care partners receive educational sessions on CBT. Additional benefits for people with PD included less anxiety, fewer negative thoughts and better ability to reframe them, more social interaction and better motor function. The more a loved one was involved with therapy for a person with PD, the better the outcome. 

Reinforcing Success

For a person who is depressed, taking action is hard. A surprising effect of cognitive behavioral therapy is that it is self-reinforcing. Set small, specific goals and let the goal guide your behavior, no matter how you feel. When you feel a glimmer of success, your enthusiasm to do more will kick in. A small change in activity can improve a person’s mood. A better outlook can inspire more activity, and a more objective assessment of the future.

Conclusion: Don’t Suffer in Silence

Your mood is a critical aspect of living with PD that you can control. Talk to your friends, family, and doctor about your mood. Any feelings of sadness or hopelessness that negatively impact your day deserve attention. If symptoms are severe, you and your medical team might consider one of the many antidepressant medications. But effective, non-drug treatments also are available, both in combination with drug therapies and on their own. If you are depressed, speak up and seek help.

For more information on depression, anxiety and treatment, read the Parkinson’s Foundation book, Mood: A Mind Guide to Parkinson's Disease or call the foundation’s free Helpline at 1-800-4PD-INFO (473-4636) to speak with a Parkinson’s specialist.

Tips for Better Sleep to Help Ward Off Anxiety and Depression

• Go to bed and get up at around the same time every day.
• Use the bed for sleep only.
• Limit daytime naps.
• Don’t lie in bed unable to sleep for long periods — get up and do something else until you feel tired, then try to sleep again.
• Limit caffeine and alcohol in the evening.
• Read more tips.

People with chronic diseases such as Parkinson’s disease (PD) are at risk of spiraling into a demoralized state. Common symptoms include feeling helpless, hopeless, a sense of failure and incapacitated to respond to stressful situations. Doctors frequently fail to identify or address this issue. There is sparse research and a rare interest in screening for demoralization. In this month’s What’s Hot in PD? column we will address demoralization in Parkinson’s disease and suggest strategies to identify and address this problem.

Brian Koo, MD, and colleagues in the April edition of Neurology set out to determine the prevalence and associated features of demoralization. The researchers studied 96 people with Parkinson’s disease and compared them to 86 people without Parkinson’s.

Demoralization was measured by the Diagnostic Criteria for Psychosomatic Research, the Demoralization Questionnaire or the Kissane Demoralization Scale score. Study participants were counted as demoralized if any of the three scores were positive. Eighteen percent of people with Parkinson’s were demoralized as compared to eight percent of those without PD.

Depression was associated with demoralization, although interestingly there were participants who were demoralized but not depressed and those who were depressed but not demoralized. Younger unmarried participants with worse motor scores on the Unified Parkinson’s Disease Rating Scale (UPDRS) examination were at particular risk for demoralization (Koo, 2018).

The bottom line for people living with PD and care-partners is that demoralization is present in about one in five people with Parkinson’s. This symptom should not be confused with depression although it may co-occur with depression.

Tips for Addressing Demoralization

1. Know that younger unmarried people with PD who experience burdensome motor symptoms have a higher risk of demoralization.
2. Get a referral for a licensed clinical social worker or counseling psychologist.
3. Try cognitive behavioral therapy. More research is needed on this technique in its effectiveness with demoralization.
4. Do not assume that depression is the cause of demoralization.
5. If depression and/or apathy is present, treatment can help.
6. Getting a referral to a psychiatrist may be useful in select cases.
7. Talk to doctors and members of the care team who are positive.

Selected References

Koo BB, Chow CA, Shah DR, Khan FH, Steinberg B, Derlein D, Nalamada K, Para KS, Kakade VM, Patel AS, de Figueiredo JM, Louis ED. Demoralization in Parkinson disease. Neurology. 2018 Apr 4. pii: 10.1212/WNL.0000000000005425. doi:10.1212/WNL.0000000000005425. [Epub ahead of print] PubMed PMID: 29618626.

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.

A new study finds that cognitive impairment is a frequent and rapidly progressing symptom of Parkinson’s disease (PD). About half of the participants who had PD for an average of five years and had normal cognition at the beginning of the study developed mild cognitive impairment (MCI) within six years – about 11 years after PD diagnosis. Those few who developed MCI progressed to dementia within five more years. The results appear in the September 11 online edition of Neurology.

With a diagnosis of PD, most people and their physicians focus on treating and coping with movement symptoms. Yet even early in the course of disease, people with PD may have difficulty multitasking, or feel that their thinking abilities are “just not the same.”

To better understand the rate at which cognitive impairment develops, and identify risk factors for the development of cognitive impairment, researchers led by Daniel Weintraub, M.D., recruited 141 people with PD to participate in the study. All were receiving treatment at the University of Pennsylvania’s Udall Center for Parkinson’s Disease Research. On average they were 69 years old and had been living with PD for five years; 63 percent were men. All participants had normal cognition based on a battery of standard tests for people with PD. The researchers re-evaluated study participants’ cognition each year for up to six years.

Results

• With each year of follow-up, a greater percentage of participants had progressed to MCI, reaching 47.4 percent after six years.
• Every participant who was diagnosed with MCI during the study, progressed to dementia within five years.
• Men were at an increased risk of cognitive impairment as were those who had higher scores on rating scales of PD motor symptoms (higher Hoehn and Yahr and UPDRS scores), a longer time living with PD and depression.

What Does It Mean?

Many people live with PD for decades with good cognitive abilities. However, this study adds to a growing body of literature that identifies cognitive impairment as a common non-motor symptom of PD. This study is also among the first to enroll a group of participants with normal cognition and to follow the progression of their cognitive difficulties over time. Compared to other studies, this one found a more rapid rate of cognitive decline among participants.

A better understanding of how PD affects cognition can help people with PD in several ways. With testing for these difficulties early in the course of disease, more people could potentially benefit from rivastigmine (Exelon®) – the only medication approved for dementia in PD.

In addition, the study results underscore the need for better therapies to slow or stop MCI, and PD progression more generally. Most PD clinical trials focus on the motor symptoms, and this study (and others) highlight the urgent need for studies focusing on interventions to slow down the rate of cognitive changes in PD. Additionally, evaluating cognition early in the course of PD could give people the opportunity to participate in clinicaltrials. Increased awareness of MCI also can help guide people in making better informed decisions about their future care.

Experts caution that PD symptoms such as depression and apathy can affect a person’s memory and ability to focus their thinking; it is important to treat these symptoms before evaluating cognition.

A shortcoming of the study is that the participants were all so similar — nearly all were Caucasian, with a high education level (16 years on average) and in a narrow age range (62-73 years). For this reason, the results may not reflect the reality in the larger population of people with PD, in which studies suggest that age is the biggest risk factor for dementia. Studies with larger numbers of participants are needed to confirm the results. One such study, which is following 8,000 people with PD at 20 different centers, already is under way.

Warning: This article contains adult-themed issues and terms.

Every year, the top Parkinson’s experts from around the world who treat people with Parkinson’s at a Parkinson’s Foundation-designated Center of Excellence (a department or clinic within a hospital that specializes in PD) convene to discuss the latest Parkinson’s research and treatments. This article summarizes the 2018 Center Leadership Conference presentation on sexual disfunction by Gila Bronner, MPH, MSW, CST, Director of Sex Therapy at the SHEBA Medical Center in Israel. Read the articles covering some of the other topics discussed: new therapies in trial, oral health and music therapy. 

Jessica made an appointment with Gila Bronner, MPH, MSW, CST, a sex therapist, to discuss a specific issue: how could she address her husband’s drooling interfering with their sex life. Even though her husband was the one living with Parkinson’s disease (PD), some symptoms affected the both of them.

Intimacy issues and sexual dysfunction is a “couple problem.” It affects both partners. One person’s sexual dysfunction often results in the same effect in their partner. For example, when a man experiences a sexual dysfunction, his partner is more likely to experience sexual dysfunction and dissatisfaction as well.

There is a high prevalence of sexual dysfunction in PD, with problems ranging from erectile dysfunction, reduced desire and frequency, vaginal dryness, orgasm difficulties and more. According to one study, people with PD rate sexual dysfunction in their top 12 most bothersome symptoms (Politis, et al., 2010). Another study cites that 41.9 percent of men and 28.2 percent of women cease sexual activity after being diagnosed with PD (Bronner, et al. 2004).

Sexual dysfunction in PD can be compounded by depression, anxiety, pain and movement-related symptoms, which can affect desire, erectile dysfunction and sexual satisfaction. Sexual dissatisfaction has been associated with movement symptoms in men, anxiety in women and depression in both genders.

As a sex therapist, Gila reminds her patients that it is important to remember that sexuality is not only about sex and orgasms; its emotional, non-sexual physical and intimate aspects play important parts. Intimate touch and sexual activity contribute to a better quality of life and health overall. They are associated with emotional and physical relaxation, better self-esteem, increased vitality and well-being, and closeness between partners.

The increase in oxytocin that comes from massage and touch can even reduce pain. Older people who continue to engage in sexual activity have better overall cognitive functioning (Hartmans, et al. 2014). Therapeutic touch has even been shown to decrease behavioral symptoms of dementia (Woods, et al. 2005).

There are many alternative intimate and sexual activities to treat sexual dysfunction, such as outercourse (other sexual activities besides sex), self-stimulation, non-demanding touch (relaxing and pleasant touch), open sexual communication, compensatory strategies and sexual aids, and erotic thoughts and fantasies.

Intimacy Tips from People with PD and Their Partners

1. Plan sex for when movement symptoms are at a minimum.
2. Apply oily lubricants to lessen the effects of tremor on skin.
3. Use sexual aids.
4. Plan positions in advance with minimized movements between positions.
5. Use lubricants for penetration during intercourse, and be sure to read the lubricant’s instructions before you begin.
6. Use satin sheets to ease movement.
7. Perform intimacy training and erotic tasks.
8. Reduce stress and burden on your partner.

“Remember that the right to share love, touch and intimate moments accompanies us along our life,” said Gila.

For more information about sex therapy or where to find a sex therapist near you, contact the Parkinson’s Foundation free 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.