Getting a Parkinson’s disease (PD) diagnosis is a sobering moment, but fear and backing away from what worries us never works in the long run. What’s sobering, or frightening even, is the uncertainty about what it means to have a progressive, incurable movement disorder. Will I be unable to run? Shuffling along soon? Unable to drive? Mute? When does all this start happening?
Answers to those questions still linger, but after a few deep breaths it became clear that these worries were not going to be faced, say, next week. The most immediate challenge was to convert all this external tremor and internal commotion into some kind of new normal so that I could get on with the business of living well. My key to moving forward has been engagement.
Engaging with friends
Letting friends in on this new development in life has been a source of support moving forward. The support of friends and family provokes the experience of being known for who you are, which for me includes my private experience of the irritating tremor or the latest non-movement symptom. Being open about my Parkinson’s diagnosis has required transparency with friends in order to be known and move forward living well.
Engaging with the care team and the PD community
I live in Grand Rapids, Michigan, where I have access to Corewell Health’s Parkinson’s multidisciplinary team, a program that the Parkinson’s Foundation has designated one of the first Comprehensive Care Centers in the U.S. I feel lucky. This Care Center has served as a gateway to new friends and other communities formed by people with Parkinson’s. The care team invited me to join the PD advisory council to help grow and improve the multidisciplinary program and urged me to help facilitate discussion in our monthly educational meetups.
Engaging with the research community
After these few deep breaths, I decided to participate in a clinical trial. As a participant in a year-long trial, I learned about Brain Storms by John Palfreman, an excellent history of PD research. I also learned about the Grand Challenges Annual Meeting at the Van Andel Institute. There, I met medical professionals, graduate students, clinicians and others doing research on Parkinson’s, as well as staff from Cure Parkinson’s in London. These relationships have been a source of inspiration.
I was engaged with a local trail running community for more than a decade prior to my diagnosis in late 2021. Weeks after my diagnosis, I connected with one of the Davis Phinney ambassadors who urged me to start weightlifting to add to my routine as a trail runner. At the gym, I have met a few others with Parkinson’s and made new friends without PD who are lifting and moving like me: to improve their quality of life. My trail running now includes my neighbor’s dog Khloe, one of my best friends and supporters.
Tips to Fight Loneliness and Social Isolation in Parkinson’s Disease
The need to belong and form relationships is as basic as our need for food and water. In fact, studies show loneliness can negatively impact our physical and mental health, possibly contributing to a number of health conditions, such as poor sleep, depression and thinking changes.
If you are living with Parkinson’s disease (PD), you may be at an even higher risk for feeling lonely and disconnected. Movement symptoms, such as stiffness, slowness and balance problems, can interfere with mobility and the ability to navigate group situations. Tremor and dyskinesia (involuntary movements) — at times visible to others — may lead to avoidance of social settings. Though less recognizable, non-movement symptoms, including fatigue, anxiety, depression and apathy, can also cause people to withdraw.
Being social is tough when you’re feeling stiff, tired, depressed or anxious, but it’s important to stay engaged, even if you don’t feel like it. Set time aside to connect with your family, friends and neighbors every day — in person, over the phone, by text or through social media.
Build social activity into your routine by scheduling outings (such as exercise or hobbies with friends) a week in advance. Let your new friends know (and remind old friends) that Parkinson’s is not always the same or predictable. Meeting times may need to shift now and then, and that’s OK. If you are worried about “off” times, coordinate your social activities with medication “on” times.
Care Partner Tip
People navigating mood symptoms may require extra support from their care partners. If your loved one has been diagnosed with apathy or has low motivation, you may need to suggest or schedule structured, regular activities rather than asking open-ended questions that require more energy. Aim to make outings fun; involve people your loved one enjoys spending time with and include small rewards throughout your daily routines.
Don’t forget about your own emotional and social needs. Figure out what “fills your tank” and build in time for that as well.
2. Connect with the right support for you.
Just as the best partners and friends empower us to shine, the right social groups are ones that make us feel understood, encouraged and welcome. For some people, finding people who share common ground — perhaps of a similar age or cultural background — can be key to feeling comfortable and seen. Participating in Parkinson’s-specific support groups, exercise classes and events provides opportunities to connect with people who understand what you are going through.
“When I first got diagnosed, you know, I didn’t see anyone like me. I now have a family that I never thought I would have.”
—Gregory, person living with Parkinson’s
Ask your healthcare team or call our Helpline at 1-800-4PD-INFO (1-800-473-4636) for information on groups in your area. Explore PD Conversations, our online network of support, or consider getting involved with your local Parkinson’s Foundation chapter.
3. Branch out.
Loneliness can run deep or come and go. Though it may be easier for people living alone to lose connection with others, even those surrounded by family and friends can yearn for a different kind of connection. Fostering relationships in different social spheres among family, friends and community builds a strong web of support to help you navigate the day-to-day challenges of Parkinson’s.
Look for opportunities to make an impact in any way that speaks to you. Some options include supporting a friend in need or getting involved in a cause close to your heart. Consider volunteering to help make life better for people living with Parkinson’s.
4. Reconnect with your passions.
Facing changes in your abilities can be disheartening, but don’t let yourself get stuck. Explore ways to modify an activity or change your environment to continue doing what you enjoy. For example, golfing may look different. Maybe now you play nine holes instead of 18. Fortunately, humans can adapt, find joy and create meaning even under difficult circumstances — particularly when we stay connected and engaged.
Did you know an occupational therapist can also help you discover ways to adapt your favorite pastimes and stay engaged with people?
5. Rely on your healthcare team.
Breaking out of your shell when you are feeling lonely and isolated is no small feat. Lean on your healthcare team. One of your providers could be the lifeline you need to get out of a dark place, either by asking a question that helps you recognize mood changes or prompting you to seek mental health treatment.
Your healthcare team is there to help support your goals and work with you to identify the best treatment options. You may need to switch providers to find the right fit for you.
“The nurse told me, ‘You know, you're going to be working. You're going to be doing things.’ Basically, she was challenging me. I was in total darkness. I didn't go anywhere. I didn't do anything. But that little window of opportunity switched my light on and, before I knew it, I was participating in boxing and the rest is kind of history.”
—Alharvey, person living with Parkinson’s
Helpful Resources
The Parkinson’s Foundation is here for you. Explore our mental wellness resources now:
Between 30-90% of people living with Parkinson’s disease (PD) may experience intimacy issues. These challenges can affect the person living with Parkinson’s as well as their partner.
Though it may seem taboo to discuss topics like sex and the human body, understanding the impact of non-movement PD symptoms like sexual dysfunction and incontinence issues can help you live well.
Navigating Intimacy
Sexual dysfunction is a common issue among the general population, but it is one of the most overlooked aspects of PD. Sexual dysfunction can encompass a variety of symptoms including sexual desire/arousal, ejaculation, sexual pain and erectile dysfunction.
Since Parkinson’s disease affects the production of dopamine in the brain, changes in levels of neurotransmitters can impact sexual function and lead to other sexual dysfunction symptoms.
There are many types of sexual dysfunction, as well as options for managing them:
Sexual arousal. To help improve sexual arousal or libido, doctors tend to first look at other potential causes, such as stress and anxiety. Treatments include types of therapies such as hormonal and sexual therapy, which usually includes your partner as well. Oral medications can also be taken to improve sexual arousal.
Ejaculation. To help ejaculation, behavioral techniques and/or vibratory stimulation can be effective. Oral and topical medications are also available to help with this symptom.
Erectile dysfunction. Lifestyle modifications and oral medications can help treat this symptom. Other potential treatments include Botox injections and surgery, which is rare.
Sexual discomfort. There are different interventions that can be used to decrease sexual discomfort such as vaginal estrogen, which comes in many forms. Additionally, behavioral, and physical interventions as well as pelvic floor physical therapy can help decrease discomfort.
Sexual dysfunction is a common problem for many individuals, but it is important to remember that these issues can be common for people living with PD. Fortunately, there are various treatments available to help combat sexual dysfunction depending on what you are experiencing and what works best for you.
Tips for Intimacy and PD
Increase open communication
Perform intimacy training and erotic tasks
Work with medical staff to reduce the effects of medications on sexual function
Understand comfortability and physical limitations of each other
Practice growing intimacy and satisfaction through sexual stimulation without intercourse, then begin to add it back in, known as the intercourse approach
Understanding Incontinence
Incontinence is the lack of voluntary control over urination or defecation. Urinary issues are one of the most prevalent non-movement symptoms of Parkinson’s disease, affecting around 40-70% of people living with PD. These issues include urgency and/or frequency of urination, leakage and infection.
In the human body, the brain, spinal cord and nerves all interact with the bladder and sphincter. Injury or damage to nerves, which occurs in neurodegenerative diseases like Parkinson’s, can impact the signaling in the bladder and lead to urinary symptoms.
First, talk to your doctor to rule out other medical issues, such as bladder or urinary infections. If your symptoms persist, there are a variety of treatments to help cope with urinary issues:
Behavioral modification includes timed voiding (going to bathroom every hour) and avoiding dietary irritants such as spicy foods and caffeine.
Pelvic muscle training can be an effective method to curb urinary issues.
Oral medications and bladder injections such as Botox are common treatments.
Surgery can be an option, but is rare.
Parkinson’s disease can impact life in many ways, especially when it comes to intimacy and incontinence. These symptoms may be challenging to manage, but there are strategies and treatments designed to help. With proper support and open communication with your care team, people living with PD can maintain a good quality of life and enjoy fulfilling relationships.
Tips for Incontinence and PD
Openly communicate with your healthcare provider and loved ones
Be aware and frequently use the restroom even if you don’t need to
Cut down on caffeine consumption
Keep a bladder diary to record your fluid intake and restroom patterns
Learn More
Explore our resources about intimacy and Parkinson’s:
The Parkinson's Foundation is here for you. Reach our Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org for answers to your Parkinson’s questions and referrals to local wellness classes and support groups
Tips for Daily Living: Building Your Mental Health Team
Addressing movement symptoms in Parkinson’s disease (PD) is often the first step to improving daily life and overall well-being. Attending to mental health is equally as important for quality of life, especially given that stress and anxiety can worsen PD movement symptoms.
Findings from our Parkinson’s Outcomes Project, the largest clinical study on PD, uncovered that mood symptoms, such as depression and anxiety, can have a greater impact on the health of people with Parkinson’s than movement issues.
Parkinson’s mood symptoms are often intertwined with everyday life challenges and the emotions of coping with a PD diagnosis. Whether or not you are experiencing depression and anxiety, recognizing your individual emotional needs, and building a strong support network that includes mental health professionals, is part of a comprehensive plan to live well with PD.
This article accompanies our virtual round-table conversation, Building Your PD Mental Health Team, which is part of our Mental Wellness Series. In this article, we highlight tips that can help you build a support team for your unique mental health needs.
Reflect on your unique emotional journey.
Take time to acknowledge the wide range of emotions that can come with PD — from sadness, grief and anger to relief, gratitude and hope — sometimes all at the same time!
As your emotional needs change throughout your PD journey, so will the people and tools you rely on. Make a list of your mental health goals and concerns. Explore new and different types of support. Reaching out for help can seem scary and overwhelming but it is often an important step to getting the support you need to feel better.
Foster positive connections.
Surround yourself with people who will listen, uplift and encourage you when you need them. Look for support among your friends, family and community.
Creating connections with others on a similar journey can remind us we are part of a larger, resilient community and keep us moving forward. PD Conversations is an online discussion group where you can discover a network of support. Ask your healthcare team or the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) about local support groups and explore events offered by your nearest Parkinson’s Foundation chapter.
Rely on professional therapy.
Psychologists, professional counselors, clinical social workers, marriage and family therapists are trained mental health providers who can offer strategies to ease stress and build coping skills. For example, a therapist trained in cognitive behavioral therapy can help you develop tools to change behaviors and thoughts that impact your emotional health.
Keep in mind that therapists are trained to listen and provide nonjudgmental feedback that both the people living with PD and care partners can benefit from.
Does your anxiety and depression last longer than a few weeks or impact your daily life?
Anxiety and depression are treatable. Talk to your healthcare providers to find the treatment option that works best for you. Call our Helpline for referrals at 1-800-4PD-INFO (1-800-473-4636).
Find the right therapist.
Mental health providers can be in short supply depending on where you live or what type of insurance you have. Be persistent and consider virtual sessions if you are unable to find a therapist in your area.
It may be difficult to find a therapist who is familiar with PD, but those who are specialized in chronic illness, grief, anxiety and depression can often address common feelings and experiences of living with a PD diagnosis.
Look for a therapist who inspires feelings of comfort and confidence. Don’t be afraid to consider a different therapist if the relationship or chemistry doesn’t work for you. Your doctor, healthcare team, support group, friends or family may be able to offer referrals. The Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) can also provide information on therapy professionals in your community.
Consider medication for mood.
Sometimes people with PD needmedications to improve depression, anxiety and other mental health challenges just as they do for the treatment of movement symptoms.Neurologists, psychiatrists, psychiatric nurse practitioners or physician assistants are among the medical providers who can help find the right mood medication for you.
An individualized approach that includes a combination of the right medications, counseling, exercise and social support has been found to be the best approach to supporting mental health.
Make necessary lifestyle modifications.
Exercise is medicine for PD. Not only is movement vital to managing movement symptoms (such as balance, strength and mobility) and overall disease progression, research has found that increasing physical activity and creating a regular exercise plan can improve depression and anxiety.
Additionally, regular social engagement, relaxation time and non-PD-related activities help promote a healthy balance.
Helpful Resources
The Parkinson’s Foundation is here for you. Explore our mental wellness resources now:
How 6 Social Workers Are Helping People with Parkinson's
Many people don’t realize just how much a social worker can help them because the profession is so diverse. Social workers can be found in many settings including hospitals, mental health care facilities, long-term care facilities, veteran centers and non-profit organizations. Although there are many kinds of social work, members of the profession all share common core values such as service, social justice, worth of the person and the importance of human relationships.
When it comes to living with Parkinson’s disease (PD) or helping a loved one, social workers can often provide counseling in clinics, leading support groups, engaging in research and more.
March is Social Work month. In celebration, we are highlighting social workers who break barriers in the PD community and how they can help you navigate Parkinson’s:
1. Social workers connect you to community resources.
As the Southeast Parkinson’s Disease Research, Education, & Clinical Centers (PADRECC) Senior Social Worker at the Central Virginia VA Healthcare System, I break barriers in the Parkinson’s community by trying to connect the VA and available community resources for our veterans and their caregivers to ensure that any and every resource is being utilized to address their whole health needs.
As part of our Interdisciplinary Clinic Care Team, I work to address any psychosocial barriers that may be impacting the veteran’s ability to participate in any of our team’s recommended medical or therapeutic services. We assist with addressing barriers to care by completing assessments for utilization of VA-issued iPad devices to bring therapists into the home for those unable to afford their own smart-devices and have difficulty leaving the home for face-to-face appointments.
– Emily Hall, LCSW, Southeast PADRECC Senior Social Worker, Central Virginia VA Healthcare System
2. Social workers help ensure that your voice is heard in Parkinson’s research.
As the social worker, education and outreach coordinator for Jefferson Health's Parkinson's Disease and Movement Disorders Center, I break barriers by ‘showing up’ and amplifying the voice of individuals who are not in the room.
I recently had the opportunity to serve on a Patient Advisory Board where I was able to make sure those missing from the table had an advocate to keep them in mind as policy and programming was being created. Working with this population directly grants me the privilege to hear from those impacted by Parkinson's care and hear what they feel is most important, and I get to bear witness and advocate on their behalf.
– Lance M. Wilson, MSS, LSW, C-SWHC, ASW-G, Social Worker / Education & Outreach Coordinator, Jefferson Health's Parkinson's Disease and Movement Disorders Center
3. Social workers provide ongoing support through palliative care.
When the opportunity came to start a neuro-palliative clinic, I was quickly on board and ready to work in collaboration with a neuro-palliative physician to meet the ongoing needs of people living with Parkinson's disease. By walking this PD journey alongside them we could be that extra layer of support to help them avoid crisis.
As a team made up of a physician, social worker, chaplain, and nurse case manager, we worked together to break the barrier of fear around "palliative care" and brought some peace to many of the anxieties experienced by people with Parkinson’s. Utilizing the palliative care lens enabled us to have difficult conversations, support families in documenting their wishes to ensure quality of life all the way through to their end-of-life experience.
– Adriana González, LCSW, Parkinson & Other Movement Disorders Center, UC San Diego Department of Neurosciences
4. Social workers organize and lead support groups.
As Director of Care Lift Corp, which provides advocacy, education and support for care partners, I break barriers in the Parkinson's community by connecting people with Parkinson’s and their care partners whose first language is not English with Parkinson's Foundation programs and resources. Care Lift has monthly support groups in Korean for the people with Parkinson's and their care partners — in-person in Metro Atlanta and virtually nationwide.
– Haejin Ban, LMSW, Parkinson’s Foundation Ambassador; Director, Care Lift Corp
5. Social workers help plan educational programs about Parkinson’s.
Sometimes barriers exist because of unintentional ignorance of facts...a lack of information or knowledge. To me, part of breaking barriers as a social worker is done by increasing awareness. Next month, our team will be holding an awareness event in our center, educating people about PD as well as highlighting what the person with PD and their families can do to achieve wellness while living with PD. Breaking barriers to live a full life!
– Elaine Book, MSW, RSW, Clinic Social Worker, Movement Disorders Clinic, Djavad Mowafaghian Centre for Brain Health, Pacific Parkinson's Research Centre
6. Social workers create programs for special populations within the Parkinson’s community.
As the coordinator of WellnessWorks programs at the Center of Excellence at Beth Israel Deaconess Medical Center, I break barriers by creating and launching programs for people with PD and care partners that go beyond the pill bottle. A recent Parkinson’s Foundation-funded program, “Parkinson’s Pride” reached out to individuals identifying with the LGBTQ+ community who have Parkinson’s, offering an opportunity to share experiences, network with others around the country and learn about resources.
One participant described “Parkinson’s Pride” as a powerful, “life-changing” experience. Parkinson’s Foundation community grants provide a yearly challenge for me to think outside the box, to dream about bold programs and then have the good fortune to implement them.
– Lissa Kapust, LICSW, Health and Wellness Program Coordinator, Palliative Care Champion, Parkinson’s Center of Excellence at Beth Israel Deaconess Medical Center
Mental Wellness: Addressing Thinking Changes in Parkinson's
Parkinson’s disease (PD) changes the brain, which can impact the whole body. While slowed movement and stiffness are among the more familiar PD symptoms, Parkinson’s can also affect cognition — the way someone thinks, how they learn, make decisions, approach and solve problems. Though some people notice thinking changes (also called cognitive changes) decades after living with PD, others can begin noticing challenges even prior to a diagnosis.
Cognitive changes can be difficult to discuss. People sometimes fear that others will see or treat them differently if they open up about their thinking issues. Additionally, they may worry about losing their place in the family, livelihood or independence. Though challenging, recognizing and talking about cognitive changes can help you and your care team identify the best therapies and coping strategies to promote your mental well-being.
Our Mental Wellness Series is dedicated to mental health conversations. This article complements our virtual round-table conversation, Addressing Parkinson’s-Related Thinking Changes. This article can help you recognize, treat and cope with cognitive changes related to Parkinson’s:
Recognizing PD-Related Thinking Changes
Have you ever said, “don’t talk to me while I’m cooking,” or doing a specific task? While everyone struggles to some degree with multitasking, it is particularly difficult for people with Parkinson’s. Other tasks that rely on executive function, such as participating in group conversations, reading a book or balancing a checkbook, can also be challenging.
Executive function is an umbrella term used to cover many cognitive skills that impact daily living. These skills include attention, focus and multitasking, as well as those involved in problem solving, planning and following multi-step instructions. These abilities help us accomplish everyday tasks and make important life decisions. Parkinson’s can also impact other cognitive areas, such as thinking speed, word-finding, language and speech, vision, depth perception and more.
Addressing Cognitive Symptoms
Since Parkinson’s disease affects cognition, it can be hard to know whether memory and thinking changes are PD-related or due to normal aging, medication, stress, sleep issues, depression, anxiety or other health conditions. If you or a loved one suspect memory or thinking changes, talk to your neurologist. Sometimes, adjusting PD medications can help. Other times, effectively treating other symptoms and conditions can improve thinking issues.
Exercise is a powerful tool to improve not only PD movement symptoms, but some non-movement symptoms such as changes in memory and thinking. Research shows that exercising regularly can improve concentration, information processing and overall cognition. Participating in a Parkinson’s-specific exercise class, going for a walk, taking a yoga or Tai Chi class or stretching can help to improve your cognitive function.
Your neurologist might also refer you to other specialists, such as neuropsychologist or speech-language pathologist. These healthcare professionals offer specialized assessments and teach strategies to cope with thinking changes and improve daily living.
Self-care and support are important to a care partner's well-being at every stage of Parkinson’s. When a loved one is experiencing significant cognitive changes there is an increased risk of caregiver burnout.
Prioritizing Mental Wellness Throughout Cognitive Change
Self-care, creative strategies and staying social can help you maintain your mental well-being while coping with thinking changes. These tips can help:
Give yourself permission to feel grief. Our thoughts, memories and the way we think form part of our identities. Experiencing cognitive change can cause feelings of loss. Recognize and honor your feelings around these changes.
Lessen your stress. Research suggests stress can worsen movement and non-movement PD symptoms, including executive function and cognition. Exercise and mindfulness, the practice of being fully in the present moment, decrease stress and are linked to symptom improvement.
Use strategies to compensate. Sticking to a daily routine and limiting distractions can make it easier to remember the essentials. Reminders on your smartphone or on a piece of paper in the right location can also provide useful cues to keep you on track. Other strategies include gathering all items needed for a task — preparing a recipe, for example — and putting them away as you go.
Stay engaged. Building healthy social connections can help keep cognition strong. Foster relationships with friends, family and members of your community. Consider finding a new support group to share your experience and connect with others. Call our Helpline 1-800-4PD-INFO (1-800-473-4636) to find a nearby group or visit PD Conversations, our online community.
Advanced Thinking Changes
As Parkinson’s advances, thinking changes can evolve from subtle changes to mild cognitive impairment (MCI) or even dementia — more severe thinking changes that can impact independence. Talk to your doctor about how to best manage advanced thinking changes.
Research shows some medications used in Alzheimer’s disease may have benefits in Parkinson’s disease dementia (PDD), including donepezil, galantamine and the FDA-approved PDD medication, rivastigmine.
Helpful Resources
The Parkinson’s Foundation is here for you. Explore more of our mental wellness resources now:
Research shows that touch boosts physical and mental wellness — it can lower heart rate, decrease depression and anxiety, strengthen the immune system and relieve pain. For couples, touch communicates affection and acceptance, which plays an important role in supporting intimacy.
When people talk about intimacy in relationships, they commonly focus on sex; however, there are many types of intimacy, including emotional, intellectual, spiritual and physical intimacy. These are often interconnected and build upon one another. Physical intimacy — both sexual and non-sexual touch — helps promote connection and overall wellbeing.
Like everything else in a relationship, physical intimacy evolves as people change and new challenges arise. With Parkinson’s disease (PD), changing relationship roles, self-esteem issues, stress, medication side effects and PD symptoms — including movement issues, mood changes, urinary problems and fatigue — can influence sexual health and physical intimacy. Care partners also experience stress, depression, fatigue and other health issues over time that can impact physical connection.
Our new Mental Wellness Series is dedicated to mental health conversations. This article complements our virtual round-table conversation, Redefining Intimacy in Parkinson's Disease & Beyond, which features certified sex therapist Gila Bronner, MPH. The below tips can help you find new ways to build intimacy with your partner while navigating PD-related challenges:
1. Build Connection with Your Partner
Life’s pressures and the day-to-day stress of living with a chronic illness like PD can cause couples to drift apart. Look for ways to stay connected and continue growing together. Share your thoughts and feelings. Spend quality time together. Take a walk, make a date for coffee, read to each other, watch a funny movie or take dance lessons — anything that unites you as friends and reduces stress.
Discussing sex or physical intimacy issues can be uncomfortable and frustrating. Many couples need help navigating these conversations. Don’t be afraid to seek out counseling or join a support group, either together or separately. Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) to find a counselor or a support group.
2. Enjoy the Moment
Even just a minute of physical touch can boost “happiness” hormones, such as oxytocin and serotonin, and reduce cortisol and noradrenaline and other “stress” hormones that can cause anxiety and restlessness. Having expectations that physical touch will lead to a specific outcome can eliminate the pleasure of the experience, create anxiety or even lead to fear.
Rather than planning for a particular result, aim for connection and pleasure. Put on a few songs, take time to exchange gentle touch with your partner, such as caressing the face, arms or shoulders, and enjoy the experience — without any demands or expectations.
3. Broaden Your Horizons
It has often been said that comparison is the thief of joy. Defining physical intimacy in terms of what it means to others, what we have been told it should mean to us or by what it has meant to us in the past can diminish our own experiences.
If you and your partner are experiencing mismatched sexual desire, talk about it. Is it due to stress, fatigue, hormones, PD or another health issue? Sexual desire and activities change over the years for a variety of reasons.
Staying connected through touch is vital to a healthy, loving relationship. Try to meet each other where you are. Of course, if you are both on the same page, sexual activity doesn’t need to stop just because it can’t be the same as it used to be. You might need to adapt your techniques, explore modifications or even plan out those moments that go beyond sensual touch.
4. Discuss Intimacy with Your Healthcare Team
Many PD symptoms affect sexual health in men and women, as well as the ability to touch, be close, communicate or even concentrate. Some of these issues can be treated, but it can be difficult to know who to turn to for advice.
For people with Parkinson’s and care partners, talking to a medical professional they feel comfortable with is often the first step, suggests Gila Bronner. Your neurologist, primary care doctor or another healthcare professional can offer advice, treatment or refer you to the appropriate specialist, such as a urologist, sex therapist or counselor.
5. Be Aware of Medication Side Effects
Dopamine agonist medications sometimes used to treat PD symptoms can lead to impulse control and hypersexuality issues. People experiencing these issues are at risk of putting themselves or others in unsafe or unhealthy situations. If you notice these side effects, let the neurologist know right away, as these medications may need to be reduced or discontinued.
Other medications, such as those for high blood pressure or antidepressants, can also impact sexual function. Discuss any concerns over medication side effects or your sexual health with your doctor, who can recommend medication adjustments or appropriate therapies.
Helpful Resources
The Parkinson’s Foundation is here for you. Explore more of our mental wellness resources now:
5 Tips for Navigating Parkinson’s-Related Life Changes
Parkinson’s disease (PD) is life-changing. For some people, a diagnosis can be a relief — an explanation for ongoing, unexplained symptoms. Others might experience loss or grief. Some may not even begin to process a diagnosis until years later.
Coming to terms with a Parkinson’s diagnosis is often the first of many changes a person living with the disease will navigate. The path forward, what you expect in a day, in relationships or in the future, can be uncertain. These day-to-day uncertainties can bring about feelings of ambiguous loss (a type of loss without closure).
In January 2023, the Parkinson’s Foundation launched our Mental Wellness Series, featuring blog articles and webinars dedicated to mental health conversations. The below tips are adapted from our first virtual round-table conversation in the new series. These tips can help you begin to discover healthy ways to navigate change when it comes to Parkinson’s.
Acknowledge your grief or feelings of loss.
Throughout life, we experience change. Hobbies, careers, relationships and roles can further change and evolve with Parkinson’s disease. When uncertainty feels like a frequent companion, life can be challenging. Honor your feelings around these changes.
Be kind to yourself.
Whether you are a person with Parkinson’s or a care partner, it’s important to recognize the challenges you face and take time out for self-care. Mindfulness can be helpful in processing change and practicing acceptance, and exercise can ease depression and other PD symptoms.
Lighten your load.
Connection — sharing your worries, your trials and your joys, and listening to the experiences of others walking their own path with Parkinson’s — are good reminders that you are not alone. Whether talking to a trusted friend, reaching out to a local support group or connecting through an online discussion group, such as PD Conversations, you can begin to open up about your hopes and frustrations.
Build a care team.
People experience the symptoms of Parkinson’s differently. Empower yourself with information on the disease management therapies that work best for you. Team-based care relies on various healthcare professionals with PD expertise to manage your symptoms on an as-needed basis.
Mental health care can help you work through change. This can include counseling and psychotherapy (talk therapy). Find reasons to hope.
Radical acceptance is when you acknowledge and honor the reality of life, as it is, in the moment. It can free you to channel your energy toward activities in which you find purpose, meaning and hope. For some, volunteering holds promise and purpose. Others find hope and community through raising awareness or sharing their story. In the face of continual change, exploring healthy coping techniques and finding mental wellness strategies that work for you can help you stay connected to what matters most.
Helpful Resources
The Parkinson’s Foundation is here for you. Explore more of our Mental Wellness resources now:
Parkinson’s Q&A: How do I manage my time and mental health?
Navigating Parkinson’s disease (PD) can feel like a never-ending learning curve. PD Conversations is a place to ask your Parkinson’s questions and connect with others living with the disease. In this blog series, we highlight a high-interest question answered by the Parkinson’s Foundation Helpline on PD Conversations.
Question: With Parkinson’s, how do you find enough time in the day to get everything done and not feel completely overwhelmed? I'm trying to find enough hours in the day to get in the exercise, the cognitive activity, my daily household chores, eating right and taking meds. Any tips?
A Parkinson’s disease diagnosis changes many areas of your life. You may have to readjust the way you work, rest and live. The changes that come with PD can cause emotional distress. Common PD symptoms may also include anxiety, apathy and depression. It is normal to have overwhelming feelings through all the changes of living with Parkinson’s, but there are resources to support your mental health and help you live well with PD.
We're here for you
Call the Parkinson's Foundation Helpline 1.800.4PD.INFO (1-800-473-4636) for answers to your Parkinson's questions.
Time management can sometimes feel like another task for your to do list, but it is crucial to create a schedule and plan that works for you and your unique PD needs. The change of lifestyle that comes with a Parkinson’s diagnosis is unavoidable, but there are ways to actively respond to this change.
Here are tips to help you manage your time:
Establish a consistent schedule. You may not always be able to plan for everything but creating a consistent schedule can help life feel less overwhelming. Talking to your doctor about the priorities and needs of your health is important for establishing a schedule.
Make time for rest. During the busyness of life, it can feel impossible to create time to rest. Setting aside time to slow down and relax can mean just 15 minutes of your day. Rest will look different for every person, but it should be a self-care activity that brightens your day and allows you to relax. Practicing self-care and rest can help to ease the overwhelmed feelings and bring mindfulness to your day.
Create goals for what you want to get done each day. Small, achievable goals can help you move forward with your health. These goals do not have to always be serious; you can create fun goals like going on a walk in a beautiful park or making a new recipe that sounds delicious.
Make time with friends and family. During the day-to-day stress, it is normal to feel lonely. Having intentional time with people you love can help support your mental health. This can be a space to process what you are feeling and connect with loved ones.
Talk with professionals to clarify any confusion and process stress. You are not alone in living with Parkinson’s. It is important to talk to the people on your care team about what you are experiencing. Health professionals can help you manage and plan what needs to get done in your daily life. It may be helpful to talk to a mental health professional about the emotions you experience as well.
Find exercise classes and mental health activities that work for you. Looking for quick, on-demand exercises for your mind or body? Our Mindfulness Mondays videos offer guided relaxation techniques, while our Fitness Friday videos provide at-home workouts led by exercise pros.
We have resources to help with the overwhelmed feelings when living with PD:
We are here to support you and your family through these changes. Please call the Parkinson’s Foundation Helpline for answers to your Parkinson’s questions or referrals to nearby health professionals, support groups or exercise programs at 1-800-4PD-INFO (1-800-473-4636).
I have been an artist for more than 40 years, using an industrial lathe as well as grinders and chisels to make large geometric sculptures. In 2010, I was sitting at my drafting table and the little finger on my left hand began to shake. It continued off and on for a few weeks and was annoying enough that I eventually went to see a neurologist.
He diagnosed the problem as "essential tremor" and said to call him if it got worse. It did get worse — my entire left arm and hand began a continuous tremor, got stiff, and my balance became precarious. I was diagnosed with Parkinson's disease (PD).
I eventually realized I could no longer use the industrial power tools that had been so necessary to the creation of my work. Standing in my empty studio some months later as my son drove away with a truck full of the tools I had assembled over 40 years was a painful and sad moment, but one I couldn't deny. What was my next move?
I originally trained as a painter at Pratt Institute in Brooklyn, NY while working on my Master’s degree, and over the years had painted and drawn, but always considered sculpting my main medium. As the tremor worsened, it was clear that the condo my husband and I lived in was not safe with its 37 steps.
We sold the condo and moved to a Mobile Home Park where I could manage the six stairs. The breakfast room became my studio, my medication was finally adjusted so that the tremor was reduced, and I began work on a series of “Parkinson's Paintings.”
Art for me has always been a passion and part of my daily existence. What I've now found is that it has become major Parkinson's therapy.
I've learned there are many things I can do to lessen the impacts of the disease: keeping a positive attitude, not being afraid, exercising (my husband and I do Tai Chi every afternoon) and finding a spiritual path. Parkinson’s Foundation resources have also helped me find professional resources and more importantly, in understanding how my life with Parkinson's can be improved and enhanced. The most important though is doing that which gives me joy, my art.
There are still many anxious and depressing moments, but the painting and drawing I do every day always bring me fulfillment and satisfaction. I know doing the art definitely reduces the impacts of Parkinson's.
I believe each of us, with this difficult disease, has something similar in their lives. Finding that something will create the courage and strength needed to live well with Parkinson’s.
