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. 

Most people associate Parkinson’s disease (PD) with tremors, a motor symptom. However, non-motor symptoms are common and can be more troublesome and disabling than motor symptoms. They can include cognitive changes, mood and sleep disorders, autonomic symptoms or weight loss. Rush University Medical Center, a Parkinson’s Foundation Center of Excellence, is not only on the front lines of PD-related cognitive research, but is actively hosting life-changing programs targeting these non-motor, and in particular, cognitive and behavioral symptoms.

Jennifer G. Goldman, MD, MS, is unique in the Parkinson’s field. She is a fellowship-trained movement disorder specialist with additional background in behavioral neurology and neuropsychiatry — an uncommon combination that provides her with a unique skillset to treat Parkinson’s non-motor symptoms.

In between seeing patients, Dr. Goldman conducts research studies to better understand what causes a person with PD to experience neuropsychiatric symptoms (such as memory loss or cognitive changes, anxiety, depression, psychosis and hallucinations). She utilizes MRI (magnetic resonance imaging) brain scans and clinical assessments to evaluate cognitive and behavioral effects. More broadly, Dr. Goldman’s research tries to find the mechanisms of the brain and biomarkers (measurable substances that attribute to the onset and progression of a disease) that contribute to Parkinson’s-related non-motor symptoms.

Research, like Dr. Goldman’s, plays a vital role in developing treatments to stop non-motor issues from progressing. “We have very good medicines, therapies and surgical treatments that can help motor symptoms, but we are far behind on being able to treat or stop any of the neuropsychiatric symptoms — particularly cognitive decline and dementia — that take a toll on quality of life for patients and care partners,” said Dr. Goldman.

Dr. Goldman and her team set out to do more. Funded through a Parkinson’s Foundation Moving Day grant, the center created a dedicated program to address the unmet needs of people with PD experiencing cognitive, behavioral and emotional symptoms of Parkinson’s.

“The Integrated Cognitive Behavioral Movement Disorder Program” includes a multidisciplinary and comprehensive clinic and offers an educational series to support people with PD and care partners who need to treat and cope with non-motor symptoms.

Roughly nine million people living with Parkinson’s in the world are not being treated by a specialist.  Through funding, the Parkinson’s Foundation supports Rush’s efforts to host an open clinic to reach as many people as possible who are most likely not receiving expert care.

While addressing cognitive and behavioral issues can be daunting for patient and doctor alike, Dr. Goldman knows that there is still a social stigma attached to mental health. She regularly sees patients who are afraid to be labeled as having a cognitive or behavioral issue in addition to their PD. Terms like dementia and psychosis can be incredibly scary for anyone coping with Parkinson’s.

“It is a well-known problem that many doctors do not have enough time during an appointment to truly explain and talk through mental health issues,”

-Dr. Goldman

This is one reason the Rush team welcomes the conversation and helps people advocate for their mental health through their clinic.

A Day at the Integrated Cognitive Behavioral Movement Disorder Clinic

On clinic day, people with any stage of Parkinson’s, from anywhere in the country are seen by the center team. Upon arriving they are:

1. Provided a comprehensive assessment by the center’s allied health team, which includes a physical therapist, occupational therapist, speech therapist, nutritionist, neuropsychologist, social worker, nurse, physician assistant and movement disorder specialist.
2. Together, the team determines a personalized treatment strategy, keeping in mind the patient’s symptoms — motor and non-motor.
3. If the patient lives in another city or state, the team will provide their assessment and treatment recommendation and refer the patient to a clinic and doctor closer to their home for future visits. If a patient is referred to the clinic and can commute for care, they can choose to receive care at Rush moving forward.  

Care doesn’t stop with the patient. “One of our program goals is to also spend time with the care partner,” Dr. Goldman said. “Most of the time, clinic appointments are not really about the care partner, but we often find that caregivers need to be addressed as well.”

To educate and aid even more people the clinic hosted an educational series. Dr. Goldman, the clinic team and invited guest speakers addressed a different neuropsychiatric topic, such as depression and hallucinations, in each of the eight sessions held. Fifty-two attendees attended the first session in July 2017. After the presentation, the session transitions into moderated support groups — one for people with PD and one for caregivers. Each can share stories about the topic addressed and ask the speakers questions. Participants are encouraged to take available resources, such as Parkinson’s Foundation books. Future series will address apathy, depression and anxiety and will include an online webinar component with virtual chats to allow people to participate from home.

“We felt there was a great need to have a forum where we could educate the Parkinson’s community about the neuropsychiatric symptoms because there is a lot of misinformation, fear and stigma surrounding these issues,” said Dr. Goldman.

Between the clinic and its sessions, the center hopes to see even more people with PD advocate for themselves. The dream remains to ultimately prevent Parkinson’s non-motor symptoms altogether, but for now, programs like the Rush Cognitive Behavioral clinic exist to make life better for people with Parkinson’s, on a physical and emotional level.

The Rush University Medical Center is located in Chicago, IL. Learn more about your nearest Center of Excellence.

It might be surprising to learn that 20-40% of people with Parkinson’s disease (PD) will experience visual hallucinations. While typically not a symptom of PD itself, they can develop due to a change in PD medication or as a symptom of an unrelated infection or illness. Knowing the signs of hallucinations and how to manage them is important.   

Hallucinations and other more severe perceptual changes can be distressing to the family — often more so than to the person experiencing them. For the well-being of people with PD and caregivers, it is important to identify hallucinations as early as possible and take steps to reduce them.

The following article is based on a Parkinson’s Foundation Expert Briefing about hallucinations and delusions in Parkinson’s hosted by Christopher G. Goetz, MD, Professor of Neurological Sciences,  Professor of Pharmacology at Rush University Medical Center, a Parkinson’s Foundation Center of Excellence.

Hallucinations 101

Doctors often refer to hallucinations and other changes in perception as psychosis. While not every person with PD will develop psychosis or its symptoms, it can still be a frightening thought. 

A hallucination is a false perception. A person sees, hears, feels or perceives something that is not there. Among people with PD, visual hallucinations are most common, often of people or animals. They tend to be vivid and to happen at night. Usually they are not frightening and can become familiar. For example, a person might regularly hallucinate a puppy with a red collar.

A delusion is a fixed conviction that something is real when it is not. For example, Tom, who has PD and was previously a car dealer, was convinced that his house was a car dealership.

Paranoia is a delusion dominated by suspiciousness, fear and concern about safety. For example, a person may falsely accuse their partner of infidelity.

Among people with PD, these perceptual changes develop on a spectrum:

• Slight: illusions, misperceptions or hallucinations with no form, like a movement in the shadows. The person recognizes they are not real.
• Mild: formed hallucinations, where the person sees a child or small animal, like a cat. It looks real, but the person knows it is not.
• Moderate: formed hallucinations, such as a brother or person. There is a loss of insight and the person thinks the hallucination is real.
• Severe: these can be negative. For example, believing a stranger is trying to harm them or a loved one. Delusions can also be pleasant — the person might think they live in a garden or all-inclusive hotel.  

Given this range, delusions can easily infringe on quality of life. While experiencing a hallucination or delusion it is common for the person experiencing it to feel calm, but for family members to feel distressed.

A progression of these symptoms is consistent in Parkinson’s. It would be rare for a person with Parkinson’s to have delusions without hallucinations. However, if a person suddenly has delusions, an infection or other medical issue is likely the cause, and it’s important to see a doctor right away.

I'm experiencing hallucinations: what now?

Research has shown that for many people with PD who have them, hallucinations begin after a change in medication, more specifically, an increase in levodopa (also known as Sinemet). Additional factors make a person more likely to experience hallucinations when medications are changed, such as other cognitive problems or memory issues, depression and sleep problems.

Dementia is a term used to describe cognitive changes — whether in memory, judgment or attention — that interfere with daily life. It also increases the risk of hallucinations and delusions when PD medications are changed.

One thing that does not affect the risk of hallucinations is your regular dose of levodopa. Rather, studies show that a change in dose — an increase in a stable dose — can set off hallucinations.

Tip: Experiencing a hallucination does not mean you are “going crazy.” Many people recognize that their hallucinations are not real. Do not react or engage these visions or sounds — dismiss them. Bring up the topic with your doctor immediately.

People with Parkinson’s often ask, “Is my hallucination a one-time event?” A study sought to answer this by tracking 89 people with PD for 10 years. At the beginning, about a third experienced hallucinations. Over time, more participants experienced them. The study found that most people with PD who hallucinate will most likely continue to do so, and over time hallucinations can worsen. After 10 years, most of the participants experienced hallucinations.

Treatment Options

There are ways to manage hallucinations or delusions:

1. Rule out medical illness as a cause. The most common causes for sudden confusion and agitation are urinary tract infection or pneumonia. Did you recently start a new non-PD medication, like a bladder medicine or narcotic?
2. Review your prescriptions. Have they been filled correctly? Double check your dosages and pills.
3. Visit your regular doctor right away. If possible, try to avoid the emergency room. Your neurologist or PD doctor can offer medical approaches to reducing hallucinations. Under your doctor’s supervision, reducing the dose of your primary Parkinson’s medication may make hallucinations more manageable. However, it can be a trade-off — reducing medications can cause unsteady walking or an increase in tremor.
4. Talk to your doctor about eliminating nonessential medicines. Many medications complement the benefits of levodopa, but may not be necessary. These include anticholinergics (trihexyphenidyl, biperiden, Benadryl), amantadine and monoamine oxidase-B inhibitors (selegiline, rasagiline).
5. Your doctor may prescribe medication that targets hallucinations. Medications like clozapine or one that promote sleep can help you manage hallucinations. Therapies for dementia may improve cognition and the ability to cope with hallucinations. Talk with your doctor to find a treatment plan that works for you.

Tips for Caregivers

When a person with Parkinson’s develops hallucinations, immediately work with your physician and follow strategies at home to make the hallucinations manageable. Recognizing hallucinations — and dismissing them — are important ways of coping.

Hallucinations and psychosis are the aspects of PD that make at-home care most difficult. They are demoralizing, can disrupt sleep and fragment home life for the family. More than movement difficulties or any other aspect of PD, caregivers find hallucinations and delusions too much to cope with. 

Caring for someone who experiences hallucinations and delusions is a difficult job. Learn more in our book Psychosis: A Mind Guide to Parkinson’s Disease.

Call the Parkinson’s Foundation free Helpline at 1-800-4PD-INFO (1-800-473-4636) to talk to Helpline specialist.

While the Parkinson’s Foundation is here for you year-round, every April we find new ways to engage our Parkinson’s community near and far to help us raise awareness during Parkinson’s Awareness Month.

This month, we challenge you to help us #StartAConversation about Parkinson’s disease (PD). The more you talk about PD with your family and friends, the more awareness we can raise about making life better for people with PD by improving care and advancing research toward a cure.

Here are 10 ways you can help us spread PD awareness and start the conversation:

1. Take the Pledge to Start a Conversation to raise awareness about PD. It’s quick and easy! Then encourage others to do the same.
2. Write a Letter to the Editor. Educate your community about Parkinson’s through your local newspaper and inspire others to get involved. Want some talking points? Use our Parkinson’s Awareness Month letter to the editor template.
3. Tell Your Story. While Parkinson.org provides millions of people with vital information each year, sometimes the most life-changing advice comes from you, our readers. Share your Parkinson’s story and you just may inspire someone.
4. Find us on Facebook and Twitter. Follow us all month for new articles, podcasts and resources created specifically for Parkinson’s Awareness Month. Tell us how you #StartAConversation this month on Facebook and Twitter.
5. Host a Do-It-Yourself Fundraiser. Start the conversation among your own social group. Host an event — from a brunch to a hike — where all proceeds help make life better for people with Parkinson’s. We’ll help you every step of the way!
6. Advocate with Us. We’re looking for people in the PD community to champion our mission. Join us in advocating for research, addressing women’s-specific needs relating to PD and helping legislate change.
7. Walk for Parkinson’s. This year, we are hosting a record 39 Moving Day events across the nation. Move with us and join the conversation. Find your nearest walk today.
8. Start a Support Group. Leslie Peters and her husband couldn’t find a support group for people with young-onset PD that fit their needs. She now manages a support group that meets over dinner. Start a support group that works for you. Read our Support Group Guide.
9. Try a New Class. Strengthen your PD community through our local networks. The Parkinson’s Foundation provides people with PD and caregivers access to local exercise classes and education programs. Call our Helpline at 1-800-4PD-INFO (473-4636) to find your next class.
10. Call our Helpline at 1-800-4PD-INFO (473-4636). Start a conversation with one of our Parkinson’s Information Specialists. The Helpline is here to support you in any way. You can also email the Helpline at Helpline@Parkinson.org.

These 10 tips are just the beginning. Find a new, exciting way to #StartAConversation at Parkinson.org/Awareness.

Care can mean many things to many people.

In the same way no two people living with Parkinson’s disease (PD) experience the same symptoms, reactions to treatment or progression, the caregiver journey is equally as unique. This November, as part of National Caregivers Month, we asked caregivers and people in the PD community to tell us what "care is" to them. Your responses inspired and motivated us to continue making lives better for people with Parkinson’s.  

 

For stories of encouragement, read our library of My PD Stories, written by and for people affected by Parkinson’s. Feeling inspired? Submit your PD Story today. It may just help someone keep going!

 

Many caregivers have told us that finding the right support group has changed their life. Find a support group that fits your needs and personality by calling our toll-free Helpline at 1-800-4PD-INFO (473-4636). Support groups are a welcoming space to vent, exchange coping methods and tips among others who understand. Haven’t found the right one? Consider starting your own!

Whether you find restoration in exercise, meditation, spirituality or professional help it is important that caregivers address their own emotional well-being. Caregiver stress and burn-out are a reality for many caregivers. It’s important to find ways to balance life and caregiving. 

 

People with Parkinson’s may experience changes in mood or act on impulsive thoughts, but it’s important to remember that PD can cause movement and non-movement symptoms. Consider trying our Caring and Coping workbook to help you navigate all the stages of Parkinson’s as a caregiver.

Through your answers, we learned that providing care can be: emotional, physical, all-consuming and rewarding. You don’t just know what Care is, but many of you live it every day. No matter how you define care, we are inspired by the answers you posted on Facebook, Instagram and Twitter:  

 Care is when you give unconditionally to someone who needs it.
- Nina K.

Care is giving whatever you can to care for the needs of whoever needs you physically, emotionally and spiritually.
- Fred & Joyce D.

Care is participating, communicating and supporting, in any and every way possible, so that those you care about never doubt it or feel like they are too much or too difficult.
- Molly S.

Care is having family and friends there when you need them.
- Jannie M.

Care is a finger print you leave on someone’s heart.
- Miriam P.

Care is having concern for others, helping others and making their lives easier.
-Judie C.

Care is soul love and spirit.
-Stephanie M.

Care is awareness.
-Valerie S.

Care is taking over the responsibilities that others can no longer fulfill.
-April B.

Care is truly feeling for the condition of an individual.
-Florence S.

Care is letting go of the past so that you can be present and seeing the person behind the illness.
-Anne E.

Care is not sweating the small stuff so that you can tackle the big stuff.
- Chaitanya P.

Care is compassion.
-Elizabeth E.

Care is having mutual respect, and compassion for your caregiver as well as expecting that from your caregiver as well.
- Debbi W.

Care is having compassion, being attentive, respectful and reassuring and emotionally on your game.
-Diane C.

Care is to walk side by side, celebrating the small achievements and holding them on the challenges that come their way.
- Mia S.

Care is synonymous with patience.
- John A.

Care is being there, through the good and the bad. Care is listening without judgment.
- David P.

Care is sacrifice.
- James S.

Care is doing the small things for someone in need; realizing baby steps with someone to help them get to an independent situation; always being there; patience, resolve, rising up, conquering!
-Maxine N.

Thank you for caring and remember that we are here to care for you.

Caregivers and people with Parkinson’s are always invited to call our Helpline 4PD-INFO (1-800-473-4636) for the latest PD information, emotional support, referrals to health professionals, local resources and more.

Movement disorders specialist Hiral Shah, MD, assistant professor of neurology at Columbia University Medical Center, is driven to improve access to quality care for people who live with mental health conditions and neurodegenerative disorders like Parkinson’s disease (PD).

Dr. Shah’s impressive career includes pursuing global public-health focused research. She has worked at the World Health Organization (WHO) on public health aspects of neurological illnesses and completed training as a Columbia Global Mental Health Scholar and Global Health and Aging Policy Fellow. With this experience, Dr. Shah always examines best practices surrounding human rights protection for those with cognitive impairment and dementia. WHO is also in the process of publishing a set of action steps to address the global disparities in Parkinson disease care.

Dr. Shah also treats people with PD in clinic at Columbia University Medical Center’s Multispecialty Neurology Division, a Parkinson’s Foundation Center of Excellence.

“I want to be a source of information and comfort to individuals and families who are dealing with PD,” said Dr. Shah. “Seeing the way that Parkinson’s can impact one's cognitive, psychological and motor functioning can be really devastating but it also drives me as a physician to take an active role in providing holistic care.”

At the outset of her career, Dr. Shah completed specialized movement disorders training at Columbia, funded through the Parkinson’s Foundation Movement Disorders Fellowship Program. This program, which supports medical institutions in providing fellows with a two-year, mentored training, has helped 150 neurologists become certified movement disorders specialists.

The Foundation has invested more than $15 million in this fellowship program since the distribution of the first award in 1980, understanding that specialized care is key to better PD outcomes. “My fellowship training was instrumental in my professional development,” said Dr. Shah. “Without the fellowship, I wouldn't be where I am today.”

“Mental health screening should become routine practice in Parkinson’s care.”
-Hiral G. Shah, MD

During her training, Dr. Shah observed that a lot of people with Parkinson’s had mental health issues that were not addressed or recognized. “Individuals and families felt stigma or hesitation about discussing mental health, but also providers often lacked the sensitivity to be able to recognize these issues. The interplay of non-motor mental health conditions on neurological symptoms (motor symptoms), cannot be overstated.”

In Dr. Shah’s medical experience, unrecognized mental health issues often overshadow movement symptoms in terms of quality-of-life impact. The Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s disease, found that non-movement symptoms like apathy and depression are more intrusive and debilitating than movement symptoms for people living with PD. “Mental health screening should become routine practice in Parkinson’s care,” Dr. Shah said.

For Dr. Shah, developing a relationship with her patients is key to understanding how to help them with the nuances of their non-movement symptoms. “It takes time to get to know a person, to really understand their level of health literacy and what allows them to formulate their healthcare beliefs.”

Dr. Shah recalls a patient who, only with time, disclosed a history of substance abuse and dependence. “Medication changes really triggered his memory of those dependency issues, and there was a resistance to medication. Once I learned that, I could better work with him.”

Public health has always been of interest to Dr. Shah, which she credits to her upbringing. “My family is from India and would take me on yearly trips there when I was growing up,” she said. "My father is a physician, so I was routinely exposed to the health care system in India through his friends and colleagues. As a developing nation with limited healthcare resources, the impacts of poverty on care there are very clear.”

Increasing access to healthcare and representation among priority populations in Parkinson’s care is paramount to Dr. Shah. “I think in the western world, a lot of the literature indicated that Parkinson’s was a disorder of the white person. What we are now recognizing is that it affects all ethnicities and races,” said Dr. Shah. “Given that it is the fastest growing neurological disorder globally, we know that this means we need to be ready for the potential impacts in the future.”

In developing educational materials for the PD community, Dr. Shah found that Black people with PD she spoke to in her research felt extremely isolated. “They told me that they have never been in the room with someone else who is Black and has Parkinson's,” she said.

This realization led to her latest project: publishing a book about the Black and African American experience with PD. The book, which is a collection of firsthand accounts from Black people impacted by PD, is due out this summer. “My hope is that people might find a piece of themselves in the stories, something that they can relate to, which helps them to see that they're not alone.”

Dr. Shah credits the Parkinson’s Foundation with being a source of high-quality information for her patients as well as a source of professional connection for her. “The Foundation has always been really enthusiastic and encouraging of my work,” said Dr. Shah. “When people with mutual interests and common concerns come together, it really helps advance the cause. As one of my mentors likes to say, ‘You can go alone or work together. It may take longer to work together, but you'll probably go further.’”

Find a movement disorders specialist in your area at Parkinson.org/Search or call the Parkinson's Foundation Helpline at 1.800.4PD.INFO (1-800-473-4636).

Maintaining cognitive brain health is a high priority for both people with Parkinson’s disease (PD) and family members. Though many living with Parkinson’s will not develop dementia, mild cognitive issues may emerge in 20 to 50 percent. As a result of this survey, a working group of experts led by Jennifer Goldman, MD, MS, at Rush University, a Parkinson’s Foundation Center of Excellence, was assembled to address this issue. In this month’s What’s Hot in PD? column, we share practical results from the working group that may be useful for both people with PD and their families.

There are potential pharmacological and non-pharmacological interventions that may be useful in addressing cognition (thinking and memory) in PD. The working group divided the recommendations for maintaining PD cognitive health into early and more advanced Parkinson’s.

Early Parkinson’s Disease

• Exercise according to guidelines from American College of Sports Medicine and American Heart Association 
• Stay active socially; for example, spend time with friends or join a support group.
• Engage in cognitive training exercises.
• Learn coping strategies; for example, work with an occupational therapist or neuropsychologist on techniques for paying attention, remembering things or doing everyday tasks.
• Nutrition can affect cognition. Consider trying the Mediterranean diet.
• Take your time when doing tasks.
• Let your family and friends know if you are having trouble.

Seek help if feeling depressed or anxious 

Advanced Parkinson’s Disease

Follow the above recommendations, in addition to: 

• Develop and follow a highly structured daily routine 
• Consider the use of medication for cognitive impairment; common medications include cholinesterase inhibitors and memantine
• Have an advanced directive in place (living will, treatments) 
• For care partners: take care of your own health as well (see doctors as needed) 

For care partners: seek out support such as counseling 

Though more pharmacological treatments are needed, we advise people not to underestimate the value of implementing many of these techniques and considerations. You can have a happy life with PD but you need a winning strategy for brain health and cognition — and that strategy may not always include a pill.

Palliative care is a holistic, team-based approach to managing chronic health conditions, such as Parkinson’s disease (PD). Palliative care specialists champion quality of life and can be central to navigating the challenges of PD from initial diagnosis, onward. Most insurance plans cover all or part of palliative care treatment costs.

The following article is based on a Parkinson’s Foundation Expert Briefings webinar exploring the role of palliative care in Advanced PD, hosted by Janis M. Miyasaki, MD, MEd, FRCPC, FAAN, Director of the Parkinson and Movement Disorders Program at University of Alberta. Regarded as the founder of PD palliative care, Dr. Miyasaki leads a movement disorders group comprising several neurologists, a neurosurgeon, neuropsychiatrist and geriatrician, and a dedicated interdisciplinary team.

What is Palliative Care?

It’s important to distinguish that palliative care is not hospice or end-of-life care. Palliative care practitioners help patients focus on living well now by actively treating all aspects of a disease.

Palliative care:

• Improves life
• Provides pain and symptom relief
• Integrates psychological and spiritual aspects of patient care
• Supports patients and families; when caregivers do well, so do people with PD
• Addresses needs through multiple disciplines
• Begins early in the course of illness
• Affirms life and regards dying as a normal process
• Neither hastens or postpones death

The best palliative care emphasizes well-being. It also acknowledges difficult feelings, such as anger and despair, that can come with a Parkinson’s diagnosis. Addressing these emotions can help people with PD cope with the often-challenging job of managing day-to-day physical symptoms.

The Care Team Role

A person’s Parkinson’s disease journey often begins in a doctor or neurologist’s office. But addressing Parkinson’s changing needs, whether physical, emotional, social or spiritual, takes a team. Specialists can include doctors, nurses, social workers, chaplains, pharmacists, nutritionists and counselors.

People with PD can also struggle with existential distress. Different from depression, these hopeless feelings stem from trying to make sense of overwhelming events, such as a Parkinson’s disease diagnosis. It’s important to address these emotions. A psychologist or an experienced spiritual care practitioner can help.

Managing Pain

As Parkinson’s advances, coping with pain can pose another challenge. Always consult your physician for pain management advice. One of the first lines of PD pain treatment is levodopa, a dopamine agonist. It treats motor symptoms, including rigidity and dystonia (sustained or repetitive muscle twisting, spasms or cramps), associated with PD pain. Range-of-motion exercises, alone or with assistance, also offer relief. A doctor or experienced licensed physical therapist can recommend appropriate exercises.

If levodopa and exercise aren’t adequately addressing pain, talk to your doctor about injectable botulinum toxin A (BOTOX) treatment. It can alleviate dystonia by targeting and weakening overactive muscles.

When all else fails, ask your physician about prescription pain medication. Due to drowsiness, confusion and other side effects, pain medication is often considered last.

Reducing Side Effects       

It’s important to take any medications as prescribed. Skipping doses or waiting until the pain is unbearable can require larger doses of medication to treat symptoms, resulting in increased side effects.

Constipation, another unpleasant pain medication side effect, can lead to more problems, including stomach and back pain, difficulty absorbing medication and hemorrhoids.

Diet can help curtail constipation. It is important to:

• Drink 64 ounces of water each day
• Eat a well-balanced, high-fiber diet including fruit, vegetables and whole grains
• Include dried fruit such as figs, dates
• Consume more beans and less meat
• Avoid white bread, rice or pasta    

Consult your doctor about constipation treatment, which can include daily exercise, abdominal massage and/or over-the-counter and prescription therapies. Read the Parkinson’s Foundation publication Constipation and Other Gastrointestinal Problems in PD for constipation solutions to discuss with your doctor.

Planning Advance Care

Palliative care includes planning for the future; a step that requires careful, thoughtful decisions. Because forms can be complicated and confusing, it is important to start the planning process early.

Aging With Dignity’s Five Wishes document can help express:

1. Who makes future care decisions
2. Desired medical care
3. Comfort level
4. Preferred treatment
5. Information to share with loved ones

Conclusion

Palliative care fosters comprehensive Parkinson’s disease management. Initial pain management approaches include non-medication therapies and range-of-motion exercises to alleviate PD symptoms. Medication used as prescribed can also minimize pain. Identifying values and consulting a psychologist or spiritual care advisor can lessen existential distress. And advance care plans can guide future healthcare in accordance with your wishes.

Have questions about Parkinson’s disease or anything you read here? Call our Helpline at 1-800-4PD-INFO (473-4636) or email us at Helpline@Parkinson.org.